What did you do today darling?

January 2012 .

2012-01-29T23:45:00.000-08:00

It's the end of January already . Once again the blog was frozen in time for a few weeks whilst life took over.

Chickenpox long gone the scars slowly fading on Heathers face , I think some will take many month even years to go , some will stay for her whole life .
Life is like that too. Something's fade with time , some will never heal , some leave constant reminders forever ingrained in our lives.

In 10 days time I am due to give birth to a little girl who will leave her own marks on this world . The last two months have been spent preparing ourselves and our family and our home for her arrival .

Christmas was wonderful , exhausting but wonderful ! My brother in law had been unwell so our planned Christmas meal at my sisters was cancelled and was relocated to our house. 15 for dinner was a challenge I'd never taken on , 15 for dinner 30 odd wks pregnant and running behind on everything due to the chicken pox grounding us through December was a hole different crazy ball game.
Thank goodness for my lovely family everyone mucked in to help and we pulled it off with smiles and much laughter through the whole of the festivities.

New year was a quiet affair this year . Friends visited for a short overnight stay and we saw the new year in in the only way I really cared for . Together. Myself , my wonderful partner my beautiful children and good friends. It never really matters where you are when you have all those things does it ?

The new year got off to a rocky start for me. My middle child is struggling to come to terms with changes in her life. She's so grown up in many ways and yet still such a little girl in so many others. She is torn between two phases , two parents and many different sets of feelings towards the world in general . School has become hard for her with exam pressures and the result of all this has been somewhat explosive. She went to stay with her dad for a couple of weeks so we all had a little down time from the highly charged emotions that were flying around the house. I needed some down time too . It's been quiet without her . She came home last night and it feels so good to have us all here under one roof again. I think I slept better in the few hours I got last night than I have in weeks put together. I wanted her here to welcome her new sister to the world and it seems she feels more ready to do so. The school worries not gone but not new either and we will carry on tackling them in time.

So we carry on the countdown ... Our lives are about to change again , in a very wonderful way . So much to look forward to , Dave has a long time at home with us , the children have a well timed half term to be here and adjust to their new sister. I have no doubt there will be rocky days where emotions run high and tempers are frayed by lack of sleep etc... What kind of family doesn't have those days ? Not many!

Our baby , the link between so many people I love has been so carefully grown inside me for the last 9months , i couldn't be carrying a more precious load ... I'm nervous for her birthday ... Praying that everyone involved understands just how very precious she is .

Ten .

2011-12-02T04:16:00.000-08:00

Ten years ago on the 30th of November 2001 I gave birth to the most amazing child . Heather has been through so much in the last decade yet everyday no matter what life throws at her she manages a smile at some point . Epilepsy ...Parkinsonism ..learning difficulties ..damaged nerves..visual difficulties ..communication difficulties .. Label after label , test after test . Conclusion ...none of it makes her any less determined less courageous ,less happy. She takes it all in her stride and rarely mourns the abilities she doesn't have. She makes me so proud .

We had planned a birthday celebration for Wed 30th Nov ,schools were closed due to teachers striking so we had a perfect day planned , with grand firework finale . Her temperature started to rise on he 29th and the seizure monster lurked around the corners eventually showing his ugly face through her , twice during that day . We stayed home determined to be well for the big day . It wasn't to be . Blisters appeared by Wednesday morning around her face ... Chicken pox . They are still coming thick and fast , her tongue has been today's worst affected area she is now unable to swallow properly and huge black blisters coat the inside of her mouth . They are everywhere imaginable , in her ears /eyes /nose , her entire body is coated . The party was cancelled .. She woke long enough to hear us sing to her and blow out some candles . And of course to give us that precious perfect smile . I love her so much , it's been a rocky road through the decade together but I'd do it all again in a heartbeat for her.

Do you remember having chicken pox as a child ? .. I don't , apparently I did have TEN small spots and was quite unwell around the same time as my siblings were completely floored by the virus . It's always been assumed I was just the hardy one .The fourth child needs to be tough!!
I've been in contact with chicken pox and shingles numerous times very closely over the years and never had another bout , the assumption being I must have immunity from my brief encounter in childhood . Last year Dave had an excruciatingly awful case of shingles , I bathed and dressed his weeping skin for a week when it was at its worst, confident I had chicken pox (which you can catch from shingles but not vice versa) . Those TEN small spots from many years back have served me well perhaps .

This week I am 30 weeks pregnant with our daughter . We kind of stop counting up now and begin the count DOWN from TEN .

Day one week TEN , I call the gp to inform him heather has chicken pox and is having seizures, supportive as always I explain my medicene regime is keeping the bigger seizures at bay , her temp is breaking through slightly and he reassures me it's ok to carry on with my slightly higher than recommended doses , the implications of the seizures being more serious than the side effects of the medication.
He asked "what about you ?" I explain I'm tired have a cold and cough but feel fine , it's just lack of sleep that will catch up when she is well again , pregnancy is going well and I'm surprisingly mobile and active and best of all enjoying it . He asked about my chicken pox immunity and I explained the situation so far . He decided he wanted to make double sure and have my blood screened urgently for antibodies. So yesterday I went to the clinic had blood taken and marked urgent for the lab , within the hour they'd called back with the results .

I have no immunity to chicken pox . :( the risks this late in pregnancy are quite serious despite what you read . The fact is most adults in the uk have immunity from chicken pox so the chances of getting it are minimal . But of those that DO get it one in one hundred pregnant women actually die from the associated complications. I have no immunity and I've spent the last 3nights huddled with a child who has more than her fair share of the infection . This is not good .

Heathers dad just made a trip to the hospital pharmacy for me and I am leaving shortly to visit the doctors for the immunoglobulin injection which he collected , I thought it was just one but there appears to be four in this prescription . If I start this now hopefully it will offer some protection for myself and for baby Hope from contracting the virus . If I already have it this should minimise the effects . I'm sad we can't share it with Heather , she's so uncomfortable . I feel so sad her birthday was spoiled by this , so we are just going to have to make the whole year that she is TEN an extra special one ..

Breaking dawn ...

2011-11-25T01:45:00.000-08:00

Just before the 3rd film in the Twighlight series came out (eclipse) Dave was living in a flat in Sussex. We saw each other every other weekend back then . I was adjusting to living alone here with the children and their father was preparing his new flat for them to be able to go and stay with him at weekends. I used to travel down to Sussex and stay at Daves whilst my ex came here to see his children. It worked well for the months it needed to . But as time passed I needed my space to feel like my own . My ex partner staying in my house at weekends when I wasn't there was odd. The weekends I spent at Daves flat were welcome time out from reality and we both look back on that time now as good times where we spent hours talking into the night and sometimes not even leaving the flat all weekend , just spending time relaxing thinking and sharing our thoughts on life , the future , and many other random things. Feeding the squirrels in the gardens , I bet they miss us.

One weekend we decided to go to the cinema to see Eclipse but Dave hadn't seen the first two films in the series, so we rented them on dvd and borrowed a projector ... Turning the huge bare walls of that far too spacious , empty , soulless flat into a makeshift cinema was the best thing anyone had ever done with it I'm sure ! The surround sound we blared out shook the entire building and Im glad I wasn't his neighbour that night haha! Twighlight , followed by New Moon and the Eclipse at the cinema all in one weekend might have seemed like overkill on the vampire thing but actually it made for a really nice relaxed weekend and one I'll never forget . It seems a long time ago already. So much has changed.
Dave moved to benfleet over a year ago now , his flat down the road was more homely, he spent time and money making it so . It was his / our plan that he would stay there. The second bedroom was intended for his daughter to visit and stay with him and he had decorated and prepared it alongside the rest of the flat for a long term stay . He moved into there in Sept 210 . So it was a whole year before he came to live with us here. His relationship with his daughter was never allowed to grow, the room remained neat and untouched for his entire tenancy. After time it took on that cold soulless feeling of the flat in Sussex. Spending more time with us here over the year getting to know my girls and seeing how life ticked over for us. This started to feel like home. When he was here I started to feel he was "coming home" and so eventually that's what we made it . His home too . We don't have much space , we are ridiculously crammed into 3 small bedrooms and the new baby will be sharing with us for the foreseeable future. Many have asked how we will manage , my answer to them has always been difficult one. What others see as a housing "problem" I simply can't see it that way.

*** Eclipse spoilers ahead do not read on if you wish to see the film without ..****

Last night we went to see the fourth film in the Twighlight saga.. Breaking dawn. I was warned before I went that it might not be suitable viewing for a heavily pregnant woman, especially one that has nightmares after watching the ten o'clock news on a regular basis! Having seen all the films so far we were both keen to see this one and Dave has of course assured me that he is not planning to perform a Caesarian on me with his teeth to bring our daughter into this world . Shortly after Bella's "human death" Jacob (not the child's father) approaches her newborn child and their eyes meet , and Jacob (who happens to be a wolf if your not familiar) imprints on the child .

And there it was , my answer to the "problem" that so many people think we have ..

" it's not like love at first sight really , it's more like ....gravity moves ... Suddenly . It's not the earth holding you here anymore , she does. You become whatever she needs you to be , whether that's protector, lover or a friend."

The connection I already feel to our child is just as it is for each of my children, after your first is born you think you will never love another human this much ever again , and every mothers heart feels those worries and shards of guilt cutting them when a second comes along and to your suprise there is always enough love to go round. Fearing the first born may feel left out worrying unnecessarily how a family will bond together. It's all perfectly normal . Baby Hope has a different father but I just know that she will still bond with her sisters and with all of my family in her own way . Gravity has moved for us , we will be what she needs us to be , she will never be the problem, it will never matter that we live in a small house or struggle financially or that the greed of others has kept us in this position.

This is the first day of the 30th week of my pregnancy , 11 short weeks left until we hold her in our arms . Our own little dawn breaking on the world and changing it forever.

The line in the sand ..

2011-11-21T01:23:00.000-08:00

It's been a while since I wrote here , about 8 weeks I think . They have been 8 busy weeks that's for sure , they say time flies when your having fun ... We must be having fun cos it seems no time at all since our 20wk scan day and weekend in Stratford.
We have decorated our room and begun buying a few things for our new arrival in the new year. We have welcomed two other new babies to the family in the last two weeks and have been filled with anticipation and wonder about our own experiences yet to come. I'm feeling amazingly well right now . We had a private hospital appointment this weekend , just to have the baby checked over again and we were joined by the other children to see the scans in 2D and 4D . The images are a little spooky but you do get an idea of the baby's facial features. She's a tall girl already weighing nearly 3 pounds and measuring about a week and a bit ahead of her actual due date which we know to be accurate from much earlier scans /treatment. We won't see her on a scan again now until January when regular growth scans will hopefully help determine a good time to induce her birth with no problems . The whole point of these regular scans is to make certain she isn't too big to hinder a straight forward entrance to our world . She is already so precious to us both.
So now we are taking time to organise Christmas and on concentrating on trying to relax and take care of ourselves and our baby.

The saying "draw a line in the sand " can have lots of different meanings and can be interpreted by others to have all kinds of creative motivations. There are those that will see a boundary as a challenge and those that will back away knowing that to cross the boundaries could be dangerous and detrimental to themselves and others.

I have rarely been one to draw lines or boundaries that cannot be compromised upon . Negotiating with toddlers ,and now teenagers is like negotiating with terrorists and should be avoided at all costs but in real life it is inevitable and the childhood mind games learned by many are all too often carried on through to adult hood . We each pick up our own parents game tactics and develop them alongside what we learn from our peers and ancestry seeps into our emotions at every level throughout our life no matter our age. The most highly developed and successful people in relationships appear to be those who are able to accept and play adult roles. Making clear choices and sticking to clear boundaries , taking into account emotional consequences and accepting there will be sacrifices .

A couple of years ago I found a strength inside myself that I never imagined existed . It's not a strength born of anger , or happiness or love for anyone else . But from within myself . Self worth and respect is something many people especially amongst the women I know , struggle with . I am a stronger person than I could have ever fathomed and one day I drew a line in the sand that no tide would wash away , that no winds could distort . A solid line carved like a huge impassible canyon. I even took myself by surprise.

Today that canyon still holds firm , and in other areas of life I have found the strength and ability to draw firm lines. Some see them as a challenge to cross or to distort, others work with me and compromise is still something I am more than capable of when the sacrifices and gains are clear and understood and of course adhered to.

When someone fools you a first time it is their fault , the second time it's fair to say you should take a share in the blame. Men it would seem have a greater fear of appearing to be a fool , they are more cautious than women to share their emotions because of this one obvious and simple yet rarely mentioned fact. Their pride is often admirable and the sacrifices they knowingly make to uphold this pride is something I think we could all do well to learn from . There is a fine line between arrogance and pride and one has to use logic AND emotion to deduce the difference.

Logic defies many emotions , so when things are complicated emotionally it can be of benefit to us all to apply some logic to emotional situations . Acknowledge and take on the responsibilities and consequences of our actions and the impact it will have on those involved. when considering the impact on more than one person it is inevitable that at times sacrifices will have to be made.

My new found strengths have enabled me to consider all of these things before drawing the lines and boundaries on my life and the lives of those who I am directly responsible for. Success breeds success this theory has worked well for me time and time again since that initial canyon was so carefully created.

This growing child inside me gives me a huge sense of responsibility for her precious life , her emotional health and well being is never second to material objects and money. Lines will be drawn to protect her and my other children and others may be as shocked as I was to realise the sacrifices I will knowingly face.

When September Ends ...

2011-09-28T04:06:00.000-07:00

The last week of September this year was a special week for us . Seeing our daughter on the scan on Friday afternoon was the perfect beginning to a great weekend . We dropped the older children at their fathers house for the weekend and swapped cars with him . He needs my car at the weekends to transport Heathers wheelchair she had parties and ice skating trips and all sorts of fun planned this weekend . The upside of this is that he swaps us for his speedy sporty car. Perfect for our trips around the country with our cameras . We set off straight away for the very pretty town of Stratford Upon Avon. I had booked this weekend months ago as part of Dave's birthday present and it had seemed so far away at the time I was only a few weeks pregnant then and suddenly it felt like time had flown . We arrived at our hotel early evening and after a short relax headed into town for a meal . Where better to start than the oldest pub in town for dinner and a drink .

On Saturday we started with a wander around the shops and town centre and even dared to look at some baby things for the first time . We haven't bought anything for the baby yet , we were pleased to find that we both had very similar ideas on what we liked and how we should decorate etc. Our project for October will be to begin preparing my house for our little ones arrival . David is finally coming to live with us on the 1st of October . It feels like we have waited for this for a long time now , we have slowly re homed the many things from his flat over the last few months and he has spent more and more time with us at the house . We are all so happy to finally be able to live together properly.

I tired of walking around the shops all too quickly so we strolled along the river bank and picked up a small rowing boat for hire . I laid back and relaxed while Dave rowed me up the river . laughter is definitely the best relaxant out there , I could have sat there all day watching people struggle to row and crash their boats and drive into the path of the bigger tour boats . River rage at its best !

I love his sarcastic smile lol I wont repeat what he was saying through his teeth to me ;)

That evening we had booked a table at a lovely restaurant . So after a dip in the hotel spa pools we headed out for dinner . Stratford Upon Avon is a really beautiful little town. I'm cross now that I wasn't more inclined to use my camera more but the intention of this part of the weekend was really to relax and rest and take in all the information given to us at the scan on Friday . And to prepare me physically and mentally for Sunday !!

Another AMAZING hotel breakfast to get me started.. I know I know its strange to take a photo of your breakfast but I am 20 weeks pregnant and I swear this breakfast held a true beauty for me .

We hopped in the car for a short drive to Silver Stone Race track , for British super bike championships . Not something Ive ever done before but I knew Dave would enjoy it and to my surprise so did I , despite the noise ( which is unbelievably loud and vibrated through your whole body )we walked many miles around the track and pits . I was exhausted at the end of the day but I have to confess I would go again! I really enjoyed the atmosphere and the tension of the races . Spectacular action when they crash filled with slight horror at the man spinning off his motorbike at 180mph . He stood up and walked away waving to the crowd . Thank god .

Dave is learning to ride these big bikes right now, his instructor is confident he will pass all his tests with ease . Whilst it fills me with fear at what could happen I'm also really happy for him fulfilling a little dream he has had for a long time. Seeing how many bikers there were at this meet made me feel a little better, literally thousands of bikers gathered a sea of motorbikes in the car park. It cant be that crazy when so many people choose this form of transport . Long term it will save us some money on transport to work etc as he keeps reminding me . But that's not the real reason hes doing this and we both know it . I'm happy to support him if this is something he really wants to do and it seems he does . hes studied and worked hard toward passing his tests and hopefully will be on the road soon .

eek!

I was in the car for about 10 minutes before sleeping on the drive home , exhausted!

And really thinking " Wake me up when September ends" ..when we are finally together after a very long wait :)

Hope .

2011-09-23T17:10:00.000-07:00

Hope is the emotional state which promotes the belief in a positive outcome related to events and circumstances in one's life. It is the "feeling that what is wanted can be had or that events will turn out for the best" or the act of "looking forward to with desire and reasonable confidence" or "feeling that something desired may happen". "to cherish a desire with anticipation"; "to desire with expectation of obtainment" "to expect with confidence". In the English language the word can be used as either a noun or a verb, although hope as a concept has a similar meaning.

The perfect name for our little girl <3

FINE .

2011-09-22T01:36:00.000-07:00

Being nervous is something I'm not really used to . I am usually pretty confident in most situations. If I'm not feeling very confident my usual strategy is to appear that in I AM . Which isn't always successful way of dealing with things but its just my way. When I appear smiling and chatty I am often at my most vulnerable . Some people know me well enough to see those moments without needing me to make them aware. Others fall hook line and sinker and think *oh shes fine* and cant even begin to imagine me feeling nervous or apprehensive about anything.
Over the last year or so this has changed quite alot . I seem to have opened up a little more to people . Allowed them to see the more vulnerable side of me and given up a little on pretending that all is OK all the time . When people ask how are you and you reply FINE .. often that's all they really want to hear . Others ask hows things ? how are you ? and when you say FINE they can see straight through it .. they know by the fact you said fine that you mean .. I'm coping . Things are very often far from fine in my world . Fine would be a 9 year old daughter that slept through the night for a start . Rather than waking 11 times ( as she did last night) and being so terribly unsettled it actually makes her unwell eventually . Fine would be so many little things just flowing as they should ... people making a little more effort for each other , trying a little harder to consider each other .. There are of course no major disasters in our life right now . So in my world the word "fine" also applies quite nicely to that.

So why am I not feeling FINE today ? Ive had a little bug , a bit of a sore throat , slight temperature last week but that's all clearing up I felt terrible but I'm on the mend pretty much FINE yknow . But still its there ....
In the pit of my stomach there is a slight churning , a nervousness I cant really describe . Tomorrow I am having a scan . I'm 20 weeks pregnant today . Half way through my pregnancy as the text books keep reminding me my skin and hair are changing , my breasts are changing , my body , my mind and my life are changing .. and my baby is growing larger everyday . The baby can hear now , the baby is establishing a pattern of waking and sleeping , kidneys are now functioning ,baby's nerves are making more and more complex connections. senses of smell, taste, sight and hearing are all developing.

Will it be a boy or girl ?? Do I even care ?? .. the answer is NO , not really . All these wonderful developments happening inside are over ruled by one thing . This baby doesn't MOVE. By 15 weeks with my 3rd child I felt small kicks and prods , a little later with the previous two but definitely by 20 wks with all of my previous children kicks and shoves from the inside were definite. Heather was my last child . Born with disabilities her legs didn't do much in the grand scheme of babies ... they would jerk and wriggle a little .. later she would get a foot caught in my ribs due to her sheer size , but never a huge forceful kick like with the first two. It feels like a similar thing this time . Some subtle rolling movements , you can SEE from the outside when the baby rolls over from one side to the other, my shape changes if I'm laying on my back. A gentle hand on top can feel the sensation against the palm of their hand . But still no kicks . No prods , no *fluttering* or *bubbling* the text books keep harping on about. For me this is not FINE .

from a popular pregnancy website .. week 20

" Your Baby
Chances are good you're feeling someone performing a round-off back handspring in your uterus by now. Is there any other feeling this cool?"

they are spot on .. that would be so cool :(

Everyone reassures me its FINE , its all going to be OK , they know it .

only they DON'T , no one can assure me this is FINE and I wish they would just realise that actually it is okay for me to be scared . I am the one with first hand knowledge of just how difficult life with a disabled child can be , and what life can be like when things really don't go *just fine* .

I'm looking forward to seeing the baby , we have been counting down the days . Dave is excited and Ive tried not to share my worries with him too much though I have failed miserably on that today . I couldn't bring myself to spoil his obvious happiness with my worries until now. I know this baby will be loved whatever he or she turns out to be like. ALIVE is a wonderful wonderful thing compared to the alternative. I'm just very aware of tough things can get in the early days , even with a regular family a new baby is a big change . We have two teenagers going through all the lovely teenage developments and a disabled 9 yr old who is nothing short of very hard work . Adding in any difficulties with this baby on top of all that we will need every ounce of strength we have . I'm so glad we have a great relationship and am confident we can get through just about anything, I have a lovely supportive family who will always be there for me no matter what. For all of this I am so grateful . I really hope that we are all blessed with a healthy baby in 20 weeks time .

The Kids Favourite meal tonight :)

2011-09-13T09:58:00.000-07:00

Now all I have to do is bake the bread :)

Time out .

2011-09-12T01:50:00.000-07:00

After a very stressful few weeks it was very much needed to take some well earned time out .

It was D's birthday on Friday and we had planned a family bbq this weekend . A chance for both our families to get to know each other . Ridiculously some of them havent even met , the fact that we have both split from ex partners with children involved on both sides many family members have reservations about meeting each other , which is hard to understand for others who have openly accepted and supported us from day one . My family thankfully totally accept D and honestly I think would stand by me through anything . He has spent time over the last year with my family, on his own playing golf with my dad, and is really good friends with my sister and brother in law , nieces nephews and even my ex partner spends a certain amount of time around us and all the family. My children are happy and treat everyone they meet with respect. Sadly their feelings are not always respected by others . People including members of both our families make insensitive remarks and probably have no idea how their actions may affect young teenage girls trying hard to settle into a new life . And thats just where we are now . Settling into a new life , decifering slowly who is included in that life , who wants to be part of it and what role they play. Are they once a year visitors ? fortnightly ? daily ? how much do you matter in OUR life and how much do we as a family matter in yours ? Its time to establish with everyone that going forward we are a family with many little extensions and branches some more significant to our everyday life than others. We recognise there will be ever changing ever growing and developing relationships within our lives nothing stays the same forever. But for now the stress of the BBQ idea seemed too much this weekend. Im tired , gaining weight and losing sleep . The thought of catering for so many physically and emotionally isnt really what we want from our life right now . We need a little down time . Time for everyone to settle some more and take their own time to decide how much a part of our future they wish to be .Much of that will be on our terms thats for sure . We have both learned from the past that there is a limit to what we will do to keep others happy and comfortable .Without wishing to directly offend anyone we will make small changes to our life to accomodate others feelings at times but there is a line drawn in the sand somewhere and it cannot and will not be crossed . We wont carry a burden of hurt to suit others.
My new baby will be my existing childrens brother or sister . All my children deserve respect and care from everyone and I will accept nothing less .

So we cancelled the plans , my ex husband took his daughters for a weekend of fun and D and I escaped for some real time out just the two of us and catch up on some much needed sleep....

We arrived at our destination late at night and were shown to a small tidy loft room with a small window looking out into the darkness . Wondering if we had made a good choice we settled down for the night in the cosy B&B bed and slept undisturbed all night .
Waking early on Saturday I peered out of the small window and was greeted by this ..

Perfect !

A full English breakfast and a hot shower later I was really glad we decided not to camp this weekend . We set off exploring the area .
We visited Man Owar bay and Durdle Door .. the long cliff ledge walk and gazillion steps down to the clear water bay was lovely however the climb back up was a bit steeper and harder than I had remembered from a previous visit . Id had forgotten how tiring it could be especially at 18 weeks pregnant with your fourth child. Exhausted we headed back to the B&B to ready ourselves for dinner . Where I promptly fell asleep for far too long ! I woke disorientated and unmotivated for a big night out . So we settled for a fish and chip picnic on the beach to watch the sun go down and a full moon light the evening sky . It was windy but a warm evening , high winds sweeping the clouds of the day away clearing the way for a much nicer Sunday .

As predicted SUnday was a much nicer day. An overwhelming tiredness hit me this weekend . I think it may have been simply that I relaxed for the first time in a few weeks , really properly relaxed ! 12 hours sleep at the very least , a nice walk around the local town and lunch at The very pretty Smugglers Inn in Osmington topped off a perfectly relaxing weekend for us both before heading home . I hope you had a wonderful weekend D . Happy Birthday darling.. looking forward to the rest of your birthday treats in a couple of weeks time .

A truly relaxing time is lovely in every way possible but I have to say the sound of my girls giggling and chatting their way down the garden path is always a welcome sound on a sunday evening after a weekend with their dad.

Time out is nice ... TIME IN can be equally nice when we are allowed the time to just BE .

hello , goodbye , goodbye, hello

2011-09-06T05:30:00.001-07:00

Goodbye summer days , lazing in the sun watching cricket on the green .

Hello Autumn sunsets , guiding us into those chilly winter evenings huddled warm indoors..

Its been a day for goodbyes. After many months of lies and game playing and rumour spreading my new partner and I are finally free to move on with our life. So many stresses put behind us today , we are now looking to the the future building a new life together . Those stresses will not be missed !

I feel lucky today for so many reasons. Today is actually my 9th wedding anniversary .My husband and I are separated , but not divorced . I am thankful that we are great friends and that he continues to be a great dad and part of all our lives . Things dont always have to end bitterly and lies and greed and hate only serve to poison lives , usually the life of those who insist on acting that way . I feel sorry for them today . When its all over what does someone like that really have ? money perhaps ... posessions .. bricks and mortar ? for sure .... happiness ? I doubt it ...

Its the end of the season .. a new season begins and the leaves will fall but only to make way for new life , new beginings. The old leaves do nothing more but enrich the soil beneath. We make use of things we have learned from our past and use them to make our future brighter stronger and full of hope .. our family is like a little tree and only the strong branches survive the winds of change ..

Its going to be a long winter but when the spring arrives god willing we will have a new member of our family safely in our arms , time to concentrate on the future. Time to let things grow in peace .

removeable limbs

2011-09-03T05:23:00.001-07:00

In his great design , I do wonder why god didnt give us arms and legs that were removeable and replaceable . Heathers legs are finding life a little hard right now shes struggling more and more each day with her walking . Its horrible to watch.
And .. I have had a return of the dreaded carpal tunnel syndrome . I had an operation about 6 years ago for it and thought it was gone . One of the niggles of pregnancy Id forgotten about . Its the strangest feeling to wake in the night thinking there is someone in your bed only to find its your own lifeless and numb arm !
It would be far more convenient if i could hang my arms on the door at night where they didnt get in the way !

Its nice to know that for me it will probably only be a temporary thing and can be helped with another small operation after the birth if i need it . But for H this is a sign of things to come . We have been toying with the idea of power chair for her and the physios have said they will back it up etc so that may well be something we look into before the baby arrives . Cos i dont have enough to think about already clearly .. I shall add it to the never ending list !

Its a sunny weekend in Essex , Im off to watch Dave play cricket later and picnic in the sunshine with a book for an hour or so as the carer is here too .

pics to follow :)

Summer mania ..

2011-08-27T05:53:00.001-07:00

Its been a few weeks since my last post . Picking up where I left off , our prayers were answered. Poppy grew stronger and fought back hard and is home with her family where she belongs. Our lovely friend next door didnt suffer for long and she was taken from us peacefully and swiftly in her sleep . The following week friends and family gathered to pay their respects to a wonderful lady who touched so many lives.
Feeling so emotionally drained nothing could have been better for the heart and soul than joining our friends from special kids in the uk for a week of camping in Shrewsbury.
Words cant really describe the support that is felt from each and every family at camp.

The day before camp another prayer was answered. In feb this year I miscarried twins , although the babies weren't planned they were instantly very much loved. Losing them made me realise that my new partner and I perhaps could have a child of our own something I didnt really know if it would even be possible. No one really seemed to have all the answers. Weeks passed and I discovered I was pregnant again . Scared to hope we waited , expecting the worst again . On Aug 2nd we went to the hospital and were thrilled to see a healthy 13wk baby on the scanner screen. Now at just over 16wks my bump is growing nicely , my back is holding up so far and doctor and midwife are confident that all could run smoothly. We couldnt be happier .

Theres alot to think about for us all for the future. My children are going to have a new half sister or brother and right now the babies father doesnt even live with us!
The overall feeling from every one around us is that whatever the difficulties we face ,we have been blessed with a new life to join our family, we can never have too many people to love and to love us in return

today I rode the rollercoaster .. I'd quite like to get off now

2011-07-22T11:48:00.000-07:00

An emotional roller coaster that is ..

I woke earlier than usual . The older girls are in Germany with their dad on a short holiday , the house was quieter than usual and I could hear a whirring sound . It was the sound of my neighbours air flow mattress slowing transferring her weight from one side of her frail and weak body to the other to prevent bed sores . Two weeks ago she was outside talking to me over the garden fence as she has for almost 18 years . Shes like a grandmother to my children . Pancreatic cancer has taken her away from us so swiftly it feels like we blinked and now we are close to her being gone forever. The day started with the thought that I must go in and see her today , morphine runs deep in her system now I hoped she would know I was there . I hadn't been very well for a couple of days so I hadn't seen her for fear of taking my awful bug to her family caring for her , she needs them so much right now . I have to admit to being a little afraid of what I would find .

Ive had some health issues myself , and concerns surrounding that have niggled me for a few days ... then I had the most wonderful reassurance about that .. fear and sad thoughts swept away temporarily and replaced with elation and hope .

I came downstairs to find an update on our friends daughter who has had what would be a routine operation for most children but sadly it has left Poppy fighting for her life . The next few hours were spent watching , waiting and anticipating the updates on her health .. shes still fighting and her friends and family are still hoping praying and willing her to pull through and come back stronger than ever from this .

Then again good news .. a letter from L's school containing her results of her beauty course exams . Lindsay has struggled with her education from day one , she has mild learning difficulties and an autistic spectrum disorder . Imagine my pride to find she had passed with MERIT a year before she was due to complete the course :) So so proud of her .

Then I picked Heather up from school and we said our goodbyes to staff and teacher , Heather will be moving class next year and this was the last day of term . A particularly special year for her teacher . F was our first ever carer , she worked with Heather through college and then through university , she was over the moon to then get a job at Heathers school and by sheer coincidence ended up being Her teacher for her first year fully qualified teaching . It was a kinda happy sad moment when they parted their ways today ..

At home I checked in on face book , my news feed was absolutely awash with love hope and prayers for little Poppy , an amazing group of parents from special kids in the UK coming together to support a much loved family and trustee of our charity . As hard as this is you cant help but smile at what this group of families can achieve , how it can make people feel .

Heather fed and playing nicely in the garden we went next door where she lay on their garden swing while I made my visit to Edie . I am at a loss for words tonight . How can we allow someone to suffer like this ? we all prayed and hoped all day for a little girl who could have a very long and happy life ahead of her .. willing her to fight , to breathe .. to live . And here I am just a few hours later , praying hoping and willing someone I really care so much about to stop fighting , to rest and to leave this world as swiftly and painlessly as we could hope for. It wont be long , I honestly pray that it is soon .

dear god , please make the right decisions tonight . I am so emotionally exhausted I will have to sleep on this roller coaster you put me on today .

Preparation.

2011-07-17T00:50:00.000-07:00

It still a couple of weeks until we head off for our annual summer camping trip. Preparations are well under way to make sure all the campers from http://www.specialkidsintheuk.org have a wonderful week. The trustees have been making deals and pleading to the good nature of many to make donations towards the few nice little planned events that we hope will bring everyone involved together nicely during our stay. I think we are almost done with our planning. Which means I can start to think about what we need to take as a family and prepare. The elder girls have asked to bring their boyfriends to camp this summer. K came with us last year and took a few days to settle . G hasn't been before and I feel I should prepare him somehow . You see our summer camp isn't the kind of thing he is used to at all. He's from a very different background to my girls , he isn't familiar with the many ways in which disabilities can affect children of all ages. Attitudes differ greatly between families .. I think our week at camp may be something of an education for him and us ! I often have to take a deep breath before explaining what is and isn't appropriate to say in our house . Thankfully tolerance and understanding is something the members of our charity are very familiar with so I expect he will come home with a new outlook having been educated by the very best people to provide that education , our children. I am also mentally preparing for the worst !

My personal " things to do" list is quite huge still and involves some tasks like ...making sure my car can actually make it to Shrewsbury ...eek! Its a big concern . It's due to carry quite a load , and whilst it's always been a lovely little donkey it's currently a little donkey with a huge oil leak . The next couple of weeks I'm hoping will fly by . I'm so looking forward to relaxing with friends at camp again.

Patience

2011-07-13T10:21:00.000-07:00

something's require patience. Patience is something that I freely admit to be lacking in certain situations.

I know my answers will come , and nothing I can do will change the outcome of what it is I so badly need to know but honestly the waiting , the worrying , the anticipating and imagining the outcome of the situation is driving me a little crazy !!
I know this is awfully cryptic but for now .. Until I get my answers this has to be the way it stays. It won't be long , in 3 short weeks I should have a much better understanding of things that will shape and change my life forever. But I find as I get older I am not gaining patience, in fact quite the opposite. I wonder if that's something that happens with everyone ? the increased need to be more organised about the future , to have some kind of plan . Or is it something that I've developed because of my circumstances? For years I winged my way through life with little thought for what if's and plans for years to come ,I took for granted that things always work out somehow. And they did. I suppose they will again, but the need I feel to try and control things more right now is overwhelming. The need to just KNOW for sure the facts about a few factors in our life has my stomach flipping somersaults every time I think about them.

Trying to occupy my mind each day is increasingly difficult, sleeping has been equally so. I don't have a crystal ball , and if I did right now I think I would be too scared to look into it. I have many friends out there who have such strong faith. A faith I wish I had too. Those who have such faith that even reading this they will reach out and pray that my unknown worries be solved. I'm not sure I believe there is a god who decides my future , in this particular instance I know that I personally have no control over the outcomes. But I do have hope. Hope that everything will turn out just fine and if I can stop counting the imaginary odds that are stacked against me and start seeing all the reasons to have hope. I can get through the next few weeks without hitting breaking point .

What you don't say ...

2011-07-10T00:44:00.001-07:00

Sometimes it's what people don't say that gives them away. The opinion they refuse to give answers exactly what they really think. That they have something to hide , a feeling or an opinion they can't share because they know just how you feel about it and want to avoid conflict.It may well be they are trying to protect you from their feelings but it always backfires in the most horrible way. We all hope the people we love will share our opinions and our hopes for the future. If they don't and we really do care for that person , it hurts when they don't. Even if they then say " oh but I do agree" if their words , actions and attitude don't appear to , there is little reason to believe.

Believing in others is something I really struggle with. Trusting others to tell the truth and share their true feelings. Years of watching people tell pointless lies with a false sense of chivalry .. Believing they lie to protect others, to prevent causing hurt. When in fact it's just to protect themselves from the truth and others knowing that truth. Lies are not protective they are destructive and sometimes not actively lying but simply not sharing the whole truth is just as destructive. Even if the whole truth will cause heartache for those you claim to love.

Some people tell lies deliberately , knowing they are destructive and that most people can be easily led by a few tall stories. Sadly we are a nation that doesn't believe one is innocent until proven guilty. People read snippets in trashy newspapers and hear rumours via distant grape vines, and they form opinions and thoughts and are ready to punish with harsh sentences based on these sources. Never questioning what the truth might be.
I was born into a family where we were taught to question everything , to ask questions and find truthful answers, even when the truth hurts. We can only make decisions based on truth and knowledge is power. We were taught to speak up for ourselves share our opinions and stand by them. Stand openly strong and willing to fight for what and who we love or believe in. As I've grown older I'm sad to discover so many people taught to lie and hide things simply to make things go their way. There is no chivalry in that. No pride and no respect for yourself or others.
My family pretty much always says what they think. Often there is conflict between us, but never hate and never true falling out. They will always step up to the plate to stand up for their own. With anyone.

Not standing up , not telling the truth not speaking out says so much more than most may think.

Tapas for two..

2011-07-08T02:47:00.001-07:00

I love tapas! ... Last night David and I went for a meal to celebrate moving to a new phase in our life.
Everything is going to change for us and the children . And although we are not completely free of the drain which keeps imposing itself upon us and our future ,we certainly are at a point where it is being put where it belongs , out of site, out of mind and absolutely out of our life! It feels good to have lots to look forward to. Both our extended families completely in support of us and the plans we have. My husband and the girls father seems to have settled into a new life and his relationship with them couldn't be better.
My health is still a little shaky at times and there are some big hurdles still to leap this year... I imagine it wont be so much a leap as a drag over the top with family and friends supporting from all angles. But how lucky we are to have such a family .

So here's to moving forward, never looking back and bloody lovely tapas !!!!

Radiator or Drain , which are you ?

2011-07-05T03:06:00.000-07:00

Radiators ...are people who are filled with positivity and warmth . Surrounded by people they love and who really truly love them in return. They give out their warmth and people want to be close to them . Everyone likes to be close to the radiator .

Drains ... Cold , negative people , draining the life and resources of others to meet their own greed which in reality will never be met because they are sad and lonely and cold and no one will ever want to be near them while they behave like a leech on the life of others draining them of happiness and warmth.

My house is so full of warmth and love , we live to our means we are not greedy and everything we have from anyone else is given willingly because of the warmth and kindness we share with others. My children are loved and happy and surrounded by loving parents and family We don't try to force anyone to love us or care for us or keep us . I am a radiator .

The drains keep trying to take the warmth from our life , but they cant. They never will.

relaxing weekend ..

2011-07-03T10:01:00.000-07:00

Weekends are one of the things that have changed most about my life in the last year or so . Being separated from my husband means that every other weekend he takes the children to his place to spend some quality time with them . We try to stick to a regular routine because we both feel its best for the girls to have a steady system in place but we are both pretty flexible when we need to be and help each other out when the need arises . We tend to swap vehicles each weekend that he has them because my car is needed to transport Heathers wheelchair , which is nice for me cos his sporty little fast car is so much fun to drive compared to my faithful old box on wheels! Sometimes Dave and I go off camping for a weekend or as was the case at Easter we took a slightly longer break and whizzed off to Scotland in the speedy car with our cameras to take photos. The girls dad stayed in my house for convenience with the girls for the week and he enjoyed doing all the usual easter egg hunts etc . Its the longest I have ever left the girls with anyone , but with their dad it didnt seem like leaving them behind at all. I really relaxed .
Relaxing has become a bit of habit now on the weekends where the girls visit dad, its almost surreal that I actually have time to myself to spend doing whatever I please .
This weekend has been one of those weekends . Friday evening we all gathered to see my eldest daughter off to her end of senior school Prom , myself, her dad , dave , my parents and friends and nieghbours all came to wish her well and see her dressed for prom. Im so proud of her . We all are . Then the girls went off to dads for the rest of the weekend . Poor dad with the worry of what time she may crawl in from the after party and in what kind of state !! I trust his judgement wholeheartedly so headed home to begin my new found art of relaxation .

A picnic in the sun at the Royal Horticultural Society garden near by , followed by Dave and I ( slowly ) paddling down the river chelmer in a small hire boat from pretty papermill lock . Home for a bbq in the garden and watching the sun go down on a beautiful day . Perfect relaxation .

I slept wonderfully .. almost too well . I feel like I have a HUGE hangover today even though no alcohol has passed my lips for about 5 months now . I have no motivation to even move let alone do anything remotely useful . Surely I cant be tired from the tiny amount of physical exercise we had yesterday ?! Ive been home alone all day , just me and the cat and the pair of us look like we've been drugged ( she has the excuse of being extremely old and frail ). Sleepy lazy uneventful sunday .. the children are due back in half an hour and I hope they are all feeling very independant this evening because I am really not up for much tonight .

Is it possible one can become TOO relaxed ?

Easing back in...

2011-06-29T02:14:00.001-07:00

The rain subsides the sun shines through and there in the grey skies is a beautiful rainbow....

The last few months have been hard for numerous reasons I stopped blogging in January because I had some news that I knew would make life rocky for me. Hopeful that everything would sort itself out and be ok but in my heart knowing it was unlikely it would . I couldn't bring myself to think about much else and knew that writing here would make things worse . I suppose I could have written about other things but my mind was so consumed , I decided to take a blog break.
As you can see we are still alive and well and things are back on track after a few months of uncertainty with my health I feel ready to enjoy my summer and looking forward to building a new future with the people I love. The man who got me through a really tough time an amazing friend and partner and the children who make my world complete.
Dave isn't the girls father , he never tries to be they appreciate that and he has his own special slot in their life and hearts, their dad is around everyday and has also been pretty cool over the last few months .We all get along well and the girls are so lucky to have so many people care for them and look out for them making the effort to remain amicable with their dad after we split has been so so worth it. He's building a new kind of relationship with them , a better one for sure than when we were together. Working together for the children making allowances and sacrifices that sometimes hurt my very soul has proved to pay off. My girls were born of my body nothing can change my relationship with them or damage the closeness we have always had. Motherhood is a bond too strong to break. But I never underestimate the value of a father in their life , no one should.
So here I am ready to ease myself back into the world of blogging , sharing our life with friends and family and anyone else who might wish to share the ride..

Just so you know.. We are very much alive and loving life :)

2011-06-28T11:33:00.001-07:00

There's life in the old dog yet..

2011-01-11T09:29:00.001-08:00

NOT calling my mother an old dog HONEST !! .. But there she is .. a few weeks ago when the snow came down .. she looks so well in this picture even though in reality she was actually struggling to walk in the snow and ice . I made her pose for a phone camera snap ! Then handed back her walking stick lol

She hasnt been very well since shortly after this was taken and we have all been quite worried about her. Today she was admitted to hospital for some tests and they found the cause of the problems and thankfully it is something perfectly treatable.

The sense of relief is palpable for the whole family . We're not ready to lose the foundations of our life just yet .

Still on the fence still talking in circles .. still in love .

2011-01-10T10:55:00.000-08:00

love this song for so many reasons..

not diggin it at all

2011-01-09T07:37:00.000-08:00

Friday evening , Dave's brother and his wife came for dinner. Bringing their two year old daughter with them. Heather and M are a very funny pair when they get together. At nine Heather probably shouldn't like the same toys and games as a two year old. This is however the nature of her disability and they actually play very well together. M is tiny and petite for her age but her personality is far from it which is great because H has never been the shy quiet type . They laughed and giggled and chased each other around the house for hours..M daintily skipping at speed with Heather hauling her uncooperative and quite chunky body around after her clumsily. As her mum there's always a pang of heart ache seeing a much smaller younger child moving with such ease running rings around Heather. But seeing her laugh smile and just have fun the way she was outweighs it easily. They are firm friends!
They left quite early as ~~I was stuffed and sleepy~~ the children were tiring and Heather really needed to sleep. A really nice evening was had by all Heather fell into bed exhausted and I wasn't going to be far behind her. The lights flickered, dimmed slightly then flickered again. A short humming sound ..Then there was a thud and the lights went out.

Power cut.

Not something to worry about at bedtime I supposed. It would be fixed by morning.

I woke up thinking *ewww that's chilly!* the gas central heating timer is computerised ... No electric means no heating... No hot water.. actually it means that in fact the entire house and most things in it are rendered completely useless! This should have fixed itself during the night surely. Apparently not.

Next door also had no power so had called for the engineers to come and fix it . Men gazed at the pavement outside .. they paced the footpath and the garden . They checked the meters in the house . They walked with giant metal detectors only to find the cables had been relaid differently to the plans they held for the area. They located the problem to the junction box between my house and next door . Then began digging .

All our plans scrapped for the day and evening . I had to cancel the babysitter and we asked to go and hide out in Dave's place til the power came back. Theres not really enough room for me and all the girls at his place but we managed .. and we didn't freeze!

3 deep holes and 24 hours later we have power .. and a very muddy garden!

Its easy to forget how much we rely on electricity !

** note to self . Buy more candles!

You can't have it all .

2011-01-07T06:40:00.000-08:00

You can take money .
You can destroy reputations.
You can damage pride and humilate a person , remove their dignity.
But not without losing some of your own .

You cannot take LOVE .

Love is something which is given . We choose who we love and why we love them . Nothing can force this .
We all have to learn to live with that fact.

BLURRSDAY

2011-01-06T22:38:00.000-08:00

Thursday was a blur of a day .. I woke up at Daves flat far later than I had planned I stayed up too late the night before reading the rather aptly named book above!!. I wasnt even planning on staying there at all let alone waking up after 8am from a horrible nightmre ..( are they still nightmares at that time of the morning ?? ) He had long gone to work . I pottered around there for a while making tidy my own mess.. all the mess there is mine hes much tidier than I could ever be .Coming to my place must be torture for him !! I went home and began those chores Ive been putting off all over xmas and new yr . PILES AND PILES of washing / ironing and other tedious jobs. Being in his tidy flat for a few hours always makes me feel I need to sort this place out a bit more . It never lasts that long mind you . The teenagers see to that !
Popped to Morrisons and bought food as we literally had NONE NOTHING ZILCH ZERO food in this house .. except the left over chocolate from xmas that no one can be bothered to eat as we are so sick of it. Before I knew it H was home dinner cooked and I was loading the dishwasher and thinking about feeding the cat before bed ... poor cat she always comes last .. despite all her desperate attempts for attention from us all. Bit of a nothing day really .. I was tired ... it was a good book though !

BAGS .

2011-01-05T20:31:00.000-08:00

A bag: Handed to me when I picked H up from school today.
Contents: shitty trousers.

Her trousers... Clean on the inside.

Someone elses shit no less.

Story of my life.

Happy new year welcome back to reality.

Gifts .

2011-01-04T20:20:00.000-08:00

This candle was a very expensive gift from someone I hardly know ..but it was very much appreciated as the thought this time really did count !!

A bit of a sore subject for me really gifts ... Not something Ive had much pleasure from before. I seem to have been surrounded for many years by people who like to give vouchers for birthdys and christmas. Or those who give a gift with the intention that *its the thought that counts* and immediately cancel it out by not THINKING very hard about it at all !! I tend to get in a state buying presents for others. I worry that it might be the wrong thing that people might not know how much they mean to me by the gifts I give. Of course money is an ever present worry in that department too. Id love to give some people lavish gifts and I know people who appreciate very expensive things .. I just dont have the money to give.
This year for christmas I bought Dave a bicycle . I knew he wanted one I knew which one he had planned on buying and why he wanted it. All very practical reasons. I had saved just enough to buy it and the other gifts I wanted for the girls and other family members. He liked it for all the practical reasons he had wanted it aswell the fact I had now bought it for him. The very first day he rode it he locked it to a fence by the train station and it was stolen.
Just my luck really .

I was given some lovely gifts this year ... I dont know if Im supposed to share what I was given yet so I will wait and blog about it later in the year perhaps. Needless to say it was a lovely gift . Beating the mens toiletry set I was given by one person by a very very long shot !!!!!!!!!!!

So things are changing in the gift department I feel .

and the true gifts in life ...im ready to give them again ....

AWAKE !!!!!

2011-01-03T11:36:00.000-08:00

We visited Colchester Zoo today with some friends from Special kids in the Uk . . I love the look on her face as Heather gazes into the Sealion tank waiting for them to swim towards her .. I love that she is SO AWAKE .. Today is OFFICIALLY the first day in over a month where she has managed to stay awake and have NO seizures ALL DAY !!!!! The last day of the holidays we are back to school and back to our usual routines tomorrow .
Its been a great christmas and new year with all my favourite people around me ♥

The Zoo was a really nice way to spend the last day of our holidays!

The Past .. shouldn't completely be forgotten.

2011-01-02T07:42:00.000-08:00

. St Nicholas Church , Laindon
The St Nicholas Church in Laindon is about 15 minutes from my house. We recently discovered that many of Dave's relatives are in fact from this area. Dave's Nan Doris was married here and his great grandparents are buried in the graveyard of the church. So today we decided to go for a little historical walk and try to locate the graves . Sadly, we were unable to find them as many of them are unmarked and the church high on its hill has been battered by the weather for many years leaving many headstones fallen / faded or damaged. We were lucky to meet the church warden who took us inside and allowed us to take photographs which we hope will bring some happy memories to someone very special when she finally gets to see them.

Its a small world .

2011.

2011-01-01T07:09:00.001-08:00

Firstly...Happy New Year !!!!

The first day of a new year. A day that for many recent years is one where I have woken up on a holiday break with friends. This year things were a little different. Jessica my first born turned 16 on New years eve and desperately wanted to go out with her best friends.The first new year without her parents.Does this mark the first sign of my babies flying the nest? She has become such a beautiful young lady, with a level head and wonderfully kind personality.She has a bright future ahead of her I'm certain.

Last year saw huge changes in all our lives. Marriage breakdown at the beginning of the year was a huge thing for my girls to face. They did so with such dignity, they make me so proud.They have managed to maintain good relationships with both their parents and also build good relationships with new people in their lives.

I have a new relationship with a kind and loving man and we are slowly but surely building a future together. A future. For so long my view of what the future might hold for me personally was quite bleak. Over the last year Dave has managed to change this for me , I can't thank him enough and feel so amazingly lucky to have him in my life.

Getting to where we are now has not been easy for anyone involved and many people have felt the need to try and involve themselves some how in the relationships that have broken and formed in both our lives, some people have judged the situation without knowing the full picture and some have shown themselves to be true friends no matter what. 2010 was very much a year for finding out who my true friends really are. I hope with all my heart that 2011 will bring peace for us. Peace for my children who have been through so much in 2010 at a time when life should be carefree (barring those exams looming this year!!!!). At 14 and now 16 they have proved to have an amazing strength of character that will set them both in good stead for years to come.

As Big Ben struck midnight last night a few tears flowed .... For the times gone by and the things we cannot change .

I made a small resolution to myself that I should allow myself to move on in 2011 begin healing some very old wounds and reach for happiness without regret.

Posted from mobile
Sandy :)

The teeeny tiny things in life.

2010-12-18T15:23:00.001-08:00

Its been a while since I updated my blog. The last month has been busy. Christmas preparations started, the decorations are up. The 30th of November was Heathers 9th birthday and party arrangements were all set. Over the last few months her seizures have increased and everyone around heer has been worried. Her epilepsy medication was increased and we were referred back to the london hospital for review. I've been finding it increasingly difficult to keep her awake. They asked us to try a new medication that completely exasperated the situation. She slept for almost the entire week leading up to her bday. The medication was quickly withdrawn. On the morning of her birthday I was optimistic she would have a great day with a small party surrounded by all those who love her. We woke to find the entire country had been covered by a blanket of snow 14 inches of it on our doorstep. Party cancelled ,school closed...and again we made the most of the simplest things in life. We built a snowman and played for as long as she was able between seizures and sleeps. I think I had started to get a little too used to the amount of sleep she has been having. In hindsight I should have been more concerned I should have pushed doctors harder to listen to my concerns instead of allowing myself to be brushed off for so long.

Like hibernating squirrels we gathered food and nestled into our home for most of the snow week. The snow soon melted schools reopened but Heathers energy failed to pick up. Then the fever came. I figured the doctors had been right... Winter bugs, calpol and neurofen flowed to the rescue.

10 days later after many many hours of sleeping and many seizures I saw the gp again. He's a good man and a great doctor. He sent us to hospital. We were fobbed off and sent home again.

I was beginning to wonder if I had imagined these symptoms, am I over reacting , too concerned?? . My heart and my head told me otherwise. I brought her back to hospital a few days later.

So here we are. After much heated discussion I finally got my way. A chest.xray. It would seem that in the phrase "her chest sounds clear" the word "sounds" is key . Chest infection confirmed we started antibiotics. At first they had very little effect and she has required oxygen for the last 24 hours. Her blood test results came back showing she has tested.positive for mycoplasma pneumonia so specific antibiotics have now been started intravenously and hopefully we should see some improvements soon.

It would be nice to get home and make sure that our christmas celebrations beat the birthday disasters!.

We may have underestimated the strength of something very very small... The minute bacteria that is knocking my girl sideways.

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Sandy :)

busy days ..

2010-11-24T05:24:00.000-08:00

this is just a quick blog to keep things ticking over really .. i was annoyed that I let my blogging go for so many months this year . Things have been a bit busy around here for the last week or so .
H has had alot of seizures which are really knocking her for six . We saw the neurologist in London last wednesday and she has been prescribed a new medication which also seems to be knocking her for six . SO I have a sleepy fitty little girl on my hands . The doctors think the new medication could take upto 8 weeks before we see any effect of the seizures . Im hoping it will be sooner !

the small things in life

2010-11-12T03:47:00.001-08:00

If you wake up one morning and god has landed these on your doorstep ... it would be rude not to wouldn't it ??

even if your already half hour late for school ...oops!

Tur nips

2010-11-10T06:39:00.001-08:00

Just because this blog has been waaay too serious this week!

Posted from mobile
Sandy :)

i am finding it quite annoying that this picture is not appearing the way it does on my phone screen .. i think you have to click it to get the full effect. Vegetables ARE funny !

Roller coaster day ..

2010-11-09T13:41:00.001-08:00

Today has been a rollercoaster of a day, H woke early as usual after a reasonably good night (by her standards waking only twice between midnight and 7 am is a good night) she demanded toast almost before opening her eyes ..she ate a little then wobbled to her feet and tried immediately to get into as much trouble as is humanly possible for a child at that time of day. Running taps and tipping and spoiling just about anything within her reach , her reach is pretty damn high these days. We tussled a little over a couple of things, she seemed to think that hitting me was a good idea. Funnily enough it doesn't really warm people to her. She was what I can only describe as agitated.

I huddled on the sofa with her trying to convince her that it might be nice to sit together and watch cbeebies , she humoured me a little struggling and wriggling from my arms to pinch me some more. Then her face began to twitch , her eyes became heavy and closed half way, her difficult to understand words became impossible and she lolled to one side. Giving in to whatever it is that overcomes her this way she laid against me. Deep in side her body tiny rippling movements pass through her upper body sometimes spiking to a short sharp jerk . The jerks passed and H dozed on. She woke about 40 minutes later , her face hanging mask like from her skull, blank , expressionless and then she cried.

I guided her upstairs and we lay on the bed together cursing the jerks that scare her. Just as they returned. Eyes rolling again she slipped back to her unconscious state. It was 1 pm when the cycle finally ended and she seemed awake and fully conscious for the first time today.
We played for couple of hours at home .. washed her hair and dried it with the hairdryer , and played silly giggly games . Abandoning the idea that our teacher training day would be spent at Tropical wings. Her carer was due at 5 and there had been talk of a short trip to the bowling alley so we concentrated on getting ready for that part of the day . Just four hours later and she began to slur again .. an almost mirror of this mornings events she fell into an unconscious state . Thankfully lasting only 50 minutes this time. She woke and ate some dinner but still looked pale and droopy around the face . Her carer came and decided to chance taking her out for a while and she managed well.
I need to make contact with the neurologist before our appointment next week I think. Things are changing , something has changed ... its not good :(
As I lay cuddling her off to sleep tonight amongst the lights and sparkles of her bedroom I couldnt help but wonder what the future might hold for her and for myself ... then I force myself to stop thinking about what ifs ..remembering we need to live for now
And as always the very last things she said before going to sleep was I LOVE YOU and I remember how lucky we are that she knows we love her too and can express it to us.

Posted from mobile
Sandy :)

Remember , remember ....

2010-11-06T16:34:00.000-07:00

It's not ALL doom and gloom.

2010-11-06T07:38:00.000-07:00

wot no mess ?

There is a flipside to every coin.

And an upside to the many changes that have taken place in my life over the last year.
The children of course still like to spend time with their dad . He has a flat not far from us and every other weekend the children go to stay with dad . Our carer is happy to go along and assist with caring for Heather too so thats a real bonus for them all. Whilst I miss them at times its also very nice to have a break from caring for others. Nice also to feel a little "cared for ". I have a fairly new relationship with someone I have known for a couple of years. Thankfully someone who has some understanding of what it might be like to live with a child that has Heathers needs and takes this into consideration most of the time. .. and then the children go to their dads for the weekend and all we have to consider is ourselves. Im aware this probably wont always be the case so Im determined to enjoy every moment for what it is right now.

Sometimes it feels like a dream .. a parallel universe where I am not *mum muuuuuum .. muuuuuuuuum!" Im just *Sandy* after 16 years of always being mum its nice to get to know Sandy again. I take time to think about what I WANT to do with my time .. often its not what others would necessarily find very interesting . But I very much appreciate having time for me again . Time to remember who I am and to share that with someone I love . I often leave the stresses of being a mum and running a home for 3 children completely behind and come to stay here in his flat which is just a few minutes from my house . Evading the washing piles and ironing piles and inevitable cleaning jobs that I would assign myself were I to stay at home during the time the girls are with their dad.

As with most dreams .. I do eventually have to wake up, which is oddly nice too . I love the moment I hear H giggling her way down the garden path calling me loudly on her return. The washing piles are still there the ironing piles are untouched and the little fingerprints remain in the dust around my house . But the time apart makes me appreciate every one of them.

The future looms and nothing stays the same . But for now I am enjoying what I can of TODAY .

I have my camera bag packed and warm clothes at the ready .. I am off to my first fireworks display ( without children! ) in 16 years . Tonight I will sleep without being woken by H numerous times as is the norm with her . Tomorrow I get to hear her calling me and clambering at speed through the front door to hug me .
Its not all doom and gloom :)

Mobile test

2010-11-04T12:53:00.001-07:00

This is a test of blogger mobile ... Something to encourage me to post more perhaps ?

We shall see!

missing months

2010-11-04T11:08:00.001-07:00

I havent posted since July . Its hard to know what to post these days .
Life has been like a train ..it feels as though I sped between stations .. had a sudden change of track and signals and then sped off again . Back on full steam .
Nothing can stand still for long in this house.

keep swimming ..keep swimming .. was always the mantra to stop myself from drowning in the stresses of life . Then everything fell apart over the course of a few months .
My husband moved out , the children were devastated and we chose a new direction . Along the way we have found many things that work really well for us as individuals and it feels like im swimming to maintain those things. For the most part life seems a little easier. But the stresses are still there .

The ones that really tear people apart from the inside.

The epilepsy monster is lurking ..and he is getting braver , showing his face all too often to attack my sweet girl.

Im not sure Im ready to face fighting this again so soon after the huge upheavals of recent months . I am still surrounded by people I love and people who love me in return and in some ways I am stronger emotionally than ever before.

But the future is so uncertain in so many ways .. i have enjoyed the time where this monster lay sleeping. I dont want to focus my heart on this yet . But there is no choice.

2010-07-13T06:25:00.000-07:00

Yesterday I turned 35 !!!
Birthdays are something I can't say I really have enjoyed much over the years for various reasons. That's something I would like to change and I suspect will happen as I get even older ..

So im going to forget the less charming parts of my bday and share the nicer moments

I went to lunch with a lovely friend who bought me beautiful flowers ..

I was given 3 lovely charms for my Pandora bracelet .. Which I had lost for sometime and was happily reunited with by complete fluke last month .. so the new charms have been added and I will be taking extra care of it from now on !

We had a lovely evening at home with birthday cake and singing .. and I finally got something I have been looking for and wanted for a long time .. I had mentioned it a long time ago and never expected anyone to really remember ..

The PERFECT teapot ! ...

tea AND cake .. what more could a girl want ? ;)

2010-07-06T12:09:00.000-07:00

If you tame me , then we shall need each other .
To me you will be unique in all the world.
To you I shall be unique in all the world.
If you tame me it will be as though the sun came to shine on my life.
I shall know the sound of a step that shall be different from all the others.
Other steps send me hurrying back underneath the ground.
And then look ; you see the grain-fields down yonder?
I do not eat bread , wheat is of no use to me.
The wheat fields have nothing to say to me.
And that is sad .
But you have hair that is the colour of gold.
Think how wonderful that will be when you have tamed me.
The grain which is also golden will bring me back to the thought of you
And I shall LOVE to listen to the wind in the wheat

Spring

2010-05-10T03:33:00.000-07:00

Spring has well and truly sprung .. It would be impossible for me to pick up this blog where it left off so much has happened and changed .

I wanted to share some pictures of this weekend . My first camping trip of 2010. The first I hope of many . I find camping really relaxing as do the children.

The girls were staying with their dad this weekend , having dinner with grandparents and swimming , going to the park etc. The sunshine of the previous week had gone into hiding so perhaps not as bright and cheerful a weekend as they had all looked forward to .

I went camping .. no kids ! D and I took our cameras and camped in a semi wild campsite in Sussex. I say semi wild as it does have a flushing toilet a rather long walk from where our tent was pitched and a standpipe for drinking water but that is the full extent of its mods cons!

There was a reason we chose this site .. BLUEBELLS ! ..we arrived during the bluebell month and managed to get some lovely pictures . I dont think a photo could ever really do the bluebell woods justice.. the smell of these pretty delicate little flowers was overwhelming when they grow in thier millions. It really was a scene I will never forget . Thanks for a lovely weekend D it was a much needed break for me and I know it was a break you really needed too .. Im glad we have been able to "find the time".

another month has passed

2010-02-15T01:34:00.000-08:00

... and in that month so much has changed.

it seems that 2010 is set to be a year of change . Things that have existed in my life for 20 years are changing into new dimensions and its happening fast.
My husband moved out two weeks into the new year to begin a new life. One i truly hope will bring him some happiness. The split has brought us both much sadness and heartache but we both also know that we have made the right decisions and not always selfishly. The older girls seem to have some understanding of how we came to this and are doing okay . M has been here at some point almost everyday since moving out and we have helped to decorate and furnish his new place so that the children can spend time with him somewhere nice. That's an important thing for any father. To be able to have a relationship with their children somewhere they can both feel comfortable. It seems to be working OK .. so far so good . I realise its very early days .

sounds easy doesn't it ? its really not been as easy as I make it sound and I am so grateful to my friends for all their support and love. The love really has been so important . Just knowing that people care has kept me looking forward . Looking back is painful. I think of all the good times and all the achievements made in a 20 year relationship and cant help wondering if this is *throwing it all away* . The reality is of course that those times have passed and were not wasted at all but we can't carry on living for the past . These decisions are about the future . About what two people want from their lives , making every day count . Having a child with a disability taught us both to appreciate life and want to live it to the very best we can.

Ive had days where its been hard , on my own with a disabled child and two teenagers who have all the usual teen challenges and some. Ive been low , very low. Each time I have managed to pick myself up and look forward to an easier day . I'm stronger than I ever thought I could be. That in itself has been a long awaited revelation.

Along the way there are lots of small torches lighting the way .. my sister and I have become closer , friends that I thought were really good friends have judged me and shown their true colours whilst others have listened carefully without assumption and proved to be worth their weight in gold. Things are changing . I cant say for sure that its changing for the better only that it is and that I will do my best to face it head on .

Its half term this week . M is very busy with work so for most of this week I will be alone with all the children with little respite. Heather woke early this morning and is full of beans after a disturbed night .. I think it might be a tough week ahead ..

Finding Time

2010-01-10T23:41:00.000-08:00

A picture post .

A NEW START .

2010-01-07T09:35:00.001-08:00

"at the very beginning" ...of the road to nowhere

Ive been feeling the need to restart my blog . Its hard to pick up where you left off ... Many things have changed in my life since I last wrote here and they will continue to change as the year passes . But it IS a new year and so instead of trying to pick up where I left off I'm going to make a new beginning and over time i think the gaps will be filled for those reading.

Today .

I had my bag packed and everything at the ready for an overnight stay in hospital with Heather . This is part of a follow up sleep study to try and diagnose her sleep disorders / narcolepsy and epilepsy. We recently discovered via some tests ( lumbar puncture and Mri) that there is a high likelihood that Heather has some form of Infantile Parkisonism. Another post for another day perhaps . We are trialling *sinimet* a known Parkinson's treatment and slowly weaning her onto that now. There are specific connections between sleep / narcolepsy and parkinsonism.
Heavy snow fall across the country has brought our transport systems to their knees once again , it seems we never prepare well enough .. or perhaps the truth is we really don't want to . We all secretly like the fact that the daily grind can stop grinding a while . A blanket of escapism falls on our country , people stop going about their daily business and take time to build a snowman , play with their children and generally remember they are alive after all .

We were due to leave at 12.30pm , the call cancelling our stay came at 12pm. So we changed our clothes and escaped .

misinterpretation.

2009-11-07T00:41:00.000-08:00

A while back I mentioned that writing a blog can sometimes feel a little like writing a horoscope. Whatever is written people tend to try to interpret their own meaning and relevance from it. Sometimes things are misinterpreted or misunderstood and that is in part why I took a couple of weeks out from writing here.
Day to day , minute to minute peoples feelings change. I have at times written in detail about my feelings *at the time of writing*.
I could feel myself looking too closely at the situation and felt the need to step back a little. Others reading were making their own assumptions and conclusions about my life and relationships. Which is fine until they voice that opinion and hurt people that I love .

BUT .. I'm still here !! I'm still kicking and actually doing pretty well this last couple of weeks.

H's behaviour seems to have settled down a little .. the atmosphere in our house has calmed somewhat. There have been more sensible calm discussions than stormy arguments. That's not to say the storm has passed it most certainly hasn't but there is a lull and I needed that so much.

I am aware we are headed for the time of year that I personally find most stressful . I need to plan and organise myself better to get through the basic things that need doing so that my 3 girls can have a nice Christmas. The celebrations happen everywhere and everyone reaches out to their friends wanting to meet and celebrate together . My diary fills with this and other things slip by the wayside. Every year the stress bubbles over inside me. Then two days after Christmas we escape with our friends from special kids and I feel like I can breathe again . That time cant come fast enough for me this year. The thought of the time between now and then makes me feel a little panicky already.

I completely understand why some animals hibernate. Of course its not an option for me so I will pick myself up and get on with it as I always have and probably always will .. and hope that I don't forget anything too important in the flurry of Christmas preparations.

Or at least I might be forgiven if I do.

whirlpool

2009-10-30T04:30:00.000-07:00

After falling out with myself I decided I should try and define the different parts of me a little better.

Separating different parts of the contradictory and give each side of the argument a little air time . I'm not sure any of this makes sense but I will try and explain .. it means breaking some rules . Something I do often .. but this time its breaking my own rules to meet my own needs. At my own peril .

I have a strong urge to try and deal with my marriage issues , but I'm not sure how to deal with them I am trying though . I have a strong urge to run away and a strong urge to stay and resolve what I can. Running away doesn't solve anything much I know that and I'm not one to back out of anything without a fight . But I think temporarily escaping before facing the demons can't be all bad. Can it ? SO I may have shut out the world and escaped within myself a little more than I should this week.
Dealing with Heathers challenging behaviour needs to be consistent and firm. The behaviour builds a tension within me and M that I feel NEEDS to be released somewhere somehow . Releasing it in any way near her defeats the object and returns the control to her behaviour. It lets the behaviour win . But sometimes its worth it for the end result .. the calm after a storm is often the most productive time. But it may increase the number of storms in future.
I have had real problems with her behaviour this week . A solemn realisation has hit hard. Wrestling an 8 yr old octopus on the kitchen floor to stop them kicking and denting the front of my new fridge ( which is about one of the only UNDAMAGED things left! ) she arched her back and headbutted me managed somehow to reach for a plastic cup that she had been drinking from and clocked me on the nose with it. I hugged her tight to me for about 30 minutes . A carer approached to help and was scratched and kicked . She helped remove her shoes to stop any more serious kick injury. When she finally calmed and the seizure monster jerked his way through her upper body 30 minutes later, I had a horrible vision of trying to tackle the same child in the same situation aged 15 .

I have to tackle the behaviour NOW . really RIGHT NOW .. even in a year I'm not sure I will be physically capable . She has gained weight and i just bought aged 9 to 10 clothes that FIT . I am scared stiff of not coping .

It sounds simple , we have the strategies and in theory they should all work. But when your tired ,your family are tired, your husband is tired and struggling with his own feelings on the subject. When you've had no time for YOU no time TOGETHER . No time to breathe or sleep. It feels like a whirlpool sucking you down . You fight and swim and kick hard and gasp for air trying to make it back to calm waters on the surface.

There is a small part of you that wonders if you take a deep breathe curl into a ball and let the current suck you down .. where do you end up ? The whirlpool must have a natural end ...it must release you at some point and maybe just maybe you would float to the surface again.

I'm not brave enough to go passively into the whirlpool .. and every time I'm exhausted I allow myself a small break from fighting it feels like I am sucked in deeper and have to kick harder to see the surface at all.

The Whirlpool might take me . Eventually . I think there is a good possibility it will grow stronger than I could ever be .

SO I'm kicking steadily trying not to exhaust myself too early .. waiting for the life line from somewhere anywhere ... all to aware of the strength of the currents building all around me . If the time comes and there is no lifeline in sight I will try to take the deepest of breaths before I'm sucked in.

if it happens ..I hope to see you on the other side my friends :)

Melancholy.

2009-10-23T03:23:00.000-07:00

I have fallen out with myself .

The contradictions within myself , my heart my head and my soul are overwhelming everything else.

I carry on planning ahead . Reaching forward . Reaching not necessarily looking . TO things I know I used to love and have enthusiasm for . Things I once KNEW without a shadow of a doubt were real.

Patiently , I am waiting , hoping and praying the beat will kick in and I might want to dance again.

The man of my dreams ...

2009-10-20T08:58:00.000-07:00

I am actually scared to sleep tonight .

Silly uh

The Reflection.

2009-10-20T02:26:00.001-07:00

Ive written alot about reflections its been two weeks since I last wrote here . Since I told you all I felt ALIVE .. I really did . I think I still am . But reflection of life is death . Death of a feeling , death of something beautiful , emerging into something ugly . Decomposing in the soil. The reflection has become the focus for now.
The subconscious reflects our state of mind and our dreams are often meaningful . I had dreamt of bright lights and flowers and long summers , laughing children and beautiful images . I could see the beauty in the rough sea and the harsh wind and the rain on my face. I still can . But the dreams have changed to nightmares , a whole night tossing and turning and running and trying to escape the darkness of middle earth. I wake sweating and physically hurting.

I found a hiding place in middle earth. a hole in no mans land . I want to curl into it and sleep but im scared to close my eyes. There are walls on either side .. one of the walls might fall down ..i cant climb over it and it would be wrong to try. The other I dont know if i want to climb because there are shards of glass and rusted nails that will hurt me on the way . I dont even know what is on the other side.

The stags were stamping out a rythm .. the tension building in the lek . The volume and intensity raised and the church bells rang .

To signify the beginning of the end. The end of what ?

But I cant move from my hole in the ground . I need to stay a while .

It wasnt all just a dream .

ALIVE.

2009-10-06T03:50:00.000-07:00

mother nature at her best on Brighton seafront on Saturday evening .. a little reminder that there is something more powerful than all of us and it can take us anytime it likes.

Its strange how somethings affect us . How our emotions can seesaw .. so high and so low .. and even both at the same time.
I like to stop and appreciate life , mother natures powers .. in ourselves and all around us.
I don't do that often enough.
My life is changing , its starting to work more for my heart than my head . I feel more confident , but perhaps less in control.More susceptible to dreaming and wondering if its possible to make them come true somehow ?

Yet on the outside I am aware it might seem quite the opposite to some.

I think people are somewhat divided by their thinking. Some people are ruled by their head and others allow their heart a little more say in what happens in their life. Its bound to bring about conflict, especially as I feel my heart pulling me away from many of the things that my husbands head thinking brain tells him are important.

While we choose our bag of worries I find I am discarding so many and he seems to be picking them up . I'm not sure why he is , they aren't important to me. Hes finding that really difficult to deal with. I'm getting angry with him for trying to make me value something I just don't need to . He is panicking because he cannot cope with my seemingly nonchalant behaviour.

Yet I feel so ALIVE !

I havent seen my watch for a while .. I do have one .. its usually a little slow and im often a little late .. I arrive with a smile , and I rarely feel embarressed by it.

Im untidy , but you are welcome in my mess. I talk too much ... to anyone who cares to listen . I won't ignore you if you talk to me whoever you are . I smile at strangers in the street and they often smile back. I like to hear others talk with passion about the things they love. I love the sun , I love the rain on my face ,the wind in my hair . This has always been me. Im still here ...

Im still alive .

Stolen Soup.

2009-10-02T07:24:00.001-07:00

Heres a bit of what I did today ...

I stole some tomatoes from my friend Alex ( who has very green fingers this year!! ) and has tooo many tomatoes growing in her garden I'm sure.

I mixed them with some carrots and a few beans - just a handful ( also Alex's) , a red onion , some shallots and fresh herbs. A couple of cloves of garlic ( i think that was hers too) . Covered them with a light spray of olive oil and roasted them!

Blended the soft aromatic roasted loveliness into THIS !

Its DIVINE!!!!! .. and it might well be all that's gets cooked in this house today as there is rather a lot of it . Soup and fresh bread would do for dinner wouldn't it ??? ..

SO this really wasn't what I had planned for today . After what feels like a lifetime of being trapped indoors with sick children. Coming down with swine flu one after the other I had finally thought we were coming out the other side. Lindsay went back to school on Wednesday. I called school explaining that Heather was a lot better , had finished her tamiflu and I really needed a break could she please come to school. I figured she would be easily tired and maybe need to take it a little easier than usual.

She came home pale and floppy. After dinner she started crying and asked for a *dodor* ( doctor) clearly not feeling well again .

It seems she wasn't quite well enough for school . She was up numerous times throughout the night with a temperature and diarrhea . SO spent most of the day like this today ... she really deserves a break too !

For a friend.

2009-10-01T16:57:00.000-07:00

Love is patient, love is kind.
It does not envy, it does not boast, it is not proud.
It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.
Love does not delight in evil but rejoices with the truth.
It always protects, always trusts, always hopes, always perseveres.

falling off a log

2009-09-30T04:56:00.000-07:00

... so easy to do ...

how hard to prevent ?

Living in a house with teenagers can be pretty stressful . Living with a 7 year old who has complex learning disabilities and physical disabilities can be a challenge. Catching swine flu is a real misfortune. Financial constraints a depressing reality. These along with lots of other smaller less impacting things can add up to quite an emotional force.
We each fight our demons in our own way. For some I feel the real demon is the method by which they choose to fight . We had a nice sunday afternoon, my husband and I spent a long time talking about alot of things , we planned ahead . We gave ourselves TIME and planned for times we hoped we could both appreciate and our children would appreciate.
We ate we relaxed and he had a few drinks. My guard is down . He went a little too far . Just a couple of drinks too many but enough to set off some fireworks and bring back some horrible memories of times I want to put behind me forever.

like falling off a log ... its easy to do .

Im okay . Dont be worried if your reading this .. it was just a little reminder of why I need to change things for myself and why I need others to take responsibility for themselves.

Time.

2009-09-26T23:37:00.000-07:00

I am back blogging , some posts stay in my drafts for weeks because I cant decide if i want to share the thoughts or not. This week for many reasons I have been unable to put my thoughts down in words. SO I am going to dig out some of the backlogblogs and share them. Adding in some extra more up to date thoughts in there ...

TIME

Our time starts from the second we are born , and at first our time is cradled by our parents and our families. People come in and out of our childhood and some change us. We remember those times. Thinking back to my earliest memory I wonder if I truly remember it or if I have heard the stories and seen the photographs of that time and mistaken it for a true memory.

Time passes much faster than we expect it to and our memory of it probably isnt as clear as we would like it to be. Im sure time would travel much slower if we paid more attention to the detail and to holding the memory of our times.

This week I feel like time has been stolen from me . A whole week has passed and I have done little barr move between my bedroom and the bathroom.

I realise that over the last 34 years I haven't appreciated my time as much as I should have . Having Heather and knowing so many children with life limiting conditions has helped us to think more carefully about our time.

Its difficult to write what I really want to say here . I thought about having one life .. one chance ... one time . I looked back over times gone by . I mentally listed the good times and noted the bad , some of the worst Im sure is yet to come but I hope that some of the very BEST too . I hope that recent changes will help me to appreciate different times for what they are ..to savour the memories of them and look back without regret that I could have lived them better.

Tough calls... priorities.

2009-09-25T03:54:00.000-07:00

On Wednesday I blogged about reflections. Causing lots of people to ask more questions and email me and worry unnecessarily about my sanity ( imo) I'm pleased they care enough to worry believe me :) but it raises other questions in my mind. How do you prioritise your friends and their feelings when faced with conflict or when your life starts to have an impact on others.

I remembered back to a time when I had a very anxious little girl. A girl who was scared of so many things in life and carried with her a huge bag of worries. Someone gave us a book called A Huge Bag of Worries. We read the book together and we talked about her worries and it turned out that many of her worries were small worries that had somehow grown in her imagination ,some were misunderstandings and some were worries that didn't even belong to her at all , but she had grabbed them up and put them in her bag by accident along with her own.

Letting go of your worries is a very hard thing to do but I chose to let go of some really huge one recently as I realised that holding them in my bag was making it much heavier. The things I worried for were out of my control. So why carry it day in day out ?

I have made real progress with sorting my bag of worries and handing back the worries that belong to others. People are slowly realising that they can ask for help with their worries if they want to but it will be my choice whether I choose to allow some of their worry into my bag. Its NOT a reflection of my love for them whether I choose to carry it or not , its merely a gauge of my own strength.

My bag is lighter , but its still a load for any one person to carry.

Don't take it personally if I cannot carry yours too , please.

How do I decide who's worries I can carry ? How do you choose between friends if you want to help many but cant carry all the bags ? You cant switch off caring about people and with that comes a mixed bag of love and worry .

Sometimes I just put the bags down and walk away .

Its just a reflection.

little pig little pig ..

2009-09-24T07:11:00.000-07:00

On Monday L came home from school with a temperature and looking quite pale . She went to bed . By Tuesday she had developed a tightness in her chest and was using a fair amount of energy to catch her breath between words. She was pale and clammy and hot and cold then hot then cold . She slept . For HOURS .
On Tuesday I felt a bit of a headache about 4pm , by 7pm I was feeling pretty awful and could feel a tightness across my chest. I developed a hoarse cough and a temperature. I spent the night tossing and turning uncomfortably and dreaming vividly. As my temperature soared dreams turned to nightmares and I woke with a terrified start numerous times through the night. Lots of medication taken by the pair of us as we are both looking a little more human right now .
Yesterday M picked Heather up from school and said he thought she didn't look well. I was in no fit state to care for her unwell or otherwise so her carer was on her way to help. She laid on the sofa and fell asleep before the carer even arrived . Waking an hour later with a hoarse croupy cough and gasping to catch her breath. Her temperature has been fluctuating rapidly since then and as her temperature rises her ability to breathe is clearly disrupted. I rang the GP . Who asked me to ring the national swine flu helpline. It appears we may all have swine flu. UGH .

Mike is about to leave to go to a special distribution centre to pick up Tami flu for Heather as she is a high risk case with epilepsy and other underlying neurological conditions. The rest of us continue to sweat it out . Ive lost weight !!!

My mind isn't quite functioning as it could. The man on the end of the line at Swine Flu Central had a deep warm rich Irish accent and I swear I melted into the phone and heard nothing of what he actually said to me. I asked him to repeat himself about 20 times .. simply to hear him say my name again . I apologised for my apparent hearing issues and reminded him that i was sick too and it wasn't that I wanted to hear his lovely accent again and again .. talk about give yourself away .. he chuckled !

SO 3 out of 5 in this house have swine flu ... I curled into bed with my little piglets and watched Peter Pan and other dreamy Disney films and hope that we start to feel better soon . Heather has dozed on and off and needs topping up regularly with medicines to keep her temperature down . From what I have seen the last few days have been beautiful , the sun has been glowing through my bedroom window and I am desperate to get out in it . Summer apparently isn't quite over and here we are missing out .

Reflections ..

2009-09-23T07:47:00.000-07:00

Ive had this post in draft for a while now .I sometimes write down snippets of thoughts that I want to save . Reflection of my ability to remember no doubt . One I recognise and try hard to compensate for .

Then today Rachel posted on face book that she had been reflecting and it reminded me that I had started writing this and that I had wanted to try and somehow get this published to my blog .

Introspection has become a big part of my life this summer. I have been thinking about my inner thoughts and feelings and allowing them to show more. Some people have been intuitively able to see the real me and that in itself has felt like a huge relief .Others have been shocked by the changes in me and some will not have noticed a thing . For me it has brought some of the not so nice parts of my personality to the surface and forced my hand to deal with them. It came as something of a revelation when I started to ask myself what it is that drives those not so nice parts of me and in fact all too often the driving force has been the things that most people would think might be the beautiful parts of any personality.

Anger is driven by fear and vulnerability and a desire to protect , jealousy is driven by love, control by fear of loss ...

The reflection is so often a distortion of the reality .. a falsification of the truth .

SO when I started to look at the reflections and the impact they were having on my life I started to get to the root of the problems I have allowed myself to hide for too long behind the reflections and have possibly misrepresented myself to others. The reflection became the forefront of the image . Averting eyes from the important parts and stopping me from being true to myself and to others.

When you sit back and ask yourself whats good about your life or what you would like to change its difficult sometimes to decipher which is the real you and which parts of the bigger picture are simply a reflection of your own and others feelings.

mummy day

2009-09-21T09:30:00.000-07:00

Today I had lunch with my mother. I needed my mum today. She maybe didnt know that but I did and she was there. We talked about alot of things . About yesterday and about the way Im feeling sometimes . She had four children she must know how it feels to want to run away . I was a difficult teenager to say the least and I was the one who never got caught .
My parents are quite old fashioned in many ways. But having said that they brought us all up to know our own minds and to be aware of our own consequences. Mums advice is always to battle on and try to be a good wife no matter what these days .. but I am who I am partly due to her influences and I think that while she hates that life is so hard sometimes for us she is proud that I have the determination to try and be true to myself. Whatever that might mean for our future.
Sad as it is to think about my parents are heading for 70 years old and much of my future will be after their time is done. I wont have them to rely on forever ... we laughed too .. I will treasure times like today .

sunday .. not a funday

2009-09-20T23:54:00.000-07:00

You might recall a recent blog about shopping with teenagers .. not exactly my idea of fun ! All too often a necessity in life. We all needed some bits and bobs for the fast approaching winter. SO today we had decided we would visit Blue water shopping centre in the afternoon. Sunday shopping doesnt even start until at least 11 .. we had plenty of time . Each member of the family had at least one task to fulfil so we planned to separate and meet up later with all our things. Excellent.
I woke up quite late for me .. about 9am . The long walk around the zoo on Saturday still radiating a painful hot memory from the base of my spine. Back pain is something I can never really describe. Ive had it for so long that often I don't feel it . Then I take pain relief for a headache and think * oh that's better! *
Mike and I have been trying to sort out some things in our life and part of our new "agreement" was that each of us would have some time for ourselves. I had left him here alone all day on Saturday to do whatever he pleased. I didn't question what he was doing or why . I think he did some sport and then he decided to tackle the blocked drain and do some housework . I didn't ask him to , if he had spent the day watching football I wouldn't have complained it was a conscious decision to take ALL the girls out and give him some space. I was supposed to have some space on Sunday for me . I had thought about going out with my camera but my back hurt and my bed felt like the nicest place to be. Heather was up and about and into mischief . Mike chose to make himself and her a cooked breakfast. I'm not a great lover of breakfast. So i snuggled down further under my quilt. Mike walked in and glanced at his watch . Looked and me and then back to his watch. And walked out again.
MY TIME . I stayed put. He pottered around tidying and getting ratty with Heather who got into more and more mischief . He kept reminding her loudly she needed to be dressed and washed to go out. But he made no attempt to do that. By 10.30 she was in full beast mode , throwing things to gain his attention. And he just exploded into a frustrated angry temper. Angry that I had stayed in bed , angry that if he had known I was going to waste my time laying there he could have gone running or out on his bike or for a swim ... utterly incensed that I should wish to lay there doing nothing he banged and he shouted and he stropped and he ranted . I pointed out that Heather was now naked throwing her clothes down the stairwell and he dragged her to the bathroom , growling and complaining about her inability to learn. " why don't you learn?" ... anyone who knows us knows the very simple answer .

learning disability.

She responds to his anger by trying harder to infuriate him .. lighting the touch papers on his beautiful fireworks display . she did .
I got up and bathed her myself and then we argued over his reactions to her behaviour and to my behaviour .. or rather my lack of behaviour other than sleep.
I gave up on my time and helped to herd the obviously equally annoying teenagers into the bathroom and out of the door eventually after preening themselves beautifully.

a horrible atmosphere for children and parents alike . and it breaks my heart.

Its not working . my plan to divide ourselves and make things work better for each of us is already hitting huge stumbling blocks.
We are very different personalities my husband and I .. don't worry he knows I am writing this and he will read it . I know how that will make him feel and I don't mean to hurt him but I don't know how else to get past this. We have talked it over and over and over .. and once the discussions are over for him that's it . That incident is simply OVER its been talked about and is therefore resolved until the next time we repeat the discussion. I wish his anger was so non transferable and short lived. Its not . he stayed angry all day . He sweated and stressed his way around the shopping centre. The teenagers bitched and argued and demanded all day. Heather grew tired of everyone else's impatience and started to misbehave .His anger magnified by every tiny annoyance. Traffic queues shopping queues, people glancing at H in her wheelchair and the older girls lack of understanding that money doesnt grow on trees.
I got what I needed and focused my mind on a time when I feel relaxed and at ease. A time with gentle friends and zoned out.
That evening we tried to talk more. We talked of solutions to each of the problems we endure as a family. Openly with all our children we discussed what they find hard in our life and how we can change things for the better. IT HAS to happen because my desire to be in the mental zone I managed to get myself into during our shopping trip is increasing daily . Its becoming a desire to leave it all behind . I love my children . But I need to feel like I am functioning person in my own right , meeting some of my own emotional needs not just food and water and air . Its hard to breathe sometimes amidst all this anger and heat.

The pivot of many of our difficulties as a family it has to be said are surrounding Heather and her disabilities. Not that any of us blame her in anyway and we all adore her so much . There is no doubting that anyone of us would risk our life for hers. We talked about living separately . Mike was careful not to enter into the emotional side of that conversation and whether it meant there would still be an US at the end of it. The children went to bed and we talked a little more. Discussions got heated and we ended up arguing again .
Its not like either of us to go sleep on bad feeling . but we did .

Perhaps showing that we both feel very strongly right now that things need to change. somehow . we just don't really know where to start. We have been in a horrible limbo situation with our social services for sometimes regarding getting some overnight respite and help with Heather. It would help no doubt if we could get a little closer to the light at the end of the tunnel .. or at least if someone lit a candle to help us find our way. .

Whipsnade !

2009-09-19T01:51:00.000-07:00

We went to meet friends from Special Kids In The UK today at Whipsnade Zoo in Bedfordshire.

After a torturous morning trying to get the teenage daughters out of bed and on our way it actually turned out to be a really nice day . unusually HOT . A little time to catch up with some friends and relax , in beautiful surroundings.

Whipsnade is a lovely zoo , but not really for the feint hearted or less mobile unless you take the car into the zoo itself. Which in hindsight might have been a better idea. Its a LONG walk between some of the exhibits and after the busy week Id had I could have done with a bit less walking. My back hurt by early afternoon. I really ached and slowly the stresses of the week seemed to hit me and exhaust me. I still had to drive home .. another outer London traffic chaos experience to come . *sigh*

That tiger looked exactly how I felt .. I would have happily snuggled beside him for a nap had it not been inevitable that he would tear my head off and eat me of course :)

I could feel my eyes itching and begging to close of the car journey home ,I think I may have even swerved a little at one point. we had to open the windows and turn the music up LOUD .. really very dangerous situation to be in and I should have known better . I wont be doing that again .

A nice but tiring day had by all .

The youngest by far ..

2009-09-18T16:30:00.000-07:00

I had an early appointment today at the stroke clinic for a scan on my neck.
The part of our local hospital where the stroke clinic is held is old , very old. As are most of the patients attending the clinic. I was the youngest patient by at 40 years at least ! Perhaps quite refreshing for the staff , I found the whole thing quite amusing to be truthful

The neuro exam on this ward includes asking questions to check whether you are suffering from any kind of dementia.

What date did the second world war end ? ... apparently I am not allowed to ask the audience phone a friend and knowing who won doesn't count !!! ..

Who is the current Prime minister ? .. of course I KNOW that but it was amusing to respond with Winston Churchill..

The young doctor shook his head at me in disgust with a wry smile and asked if i was able to walk to the scanning room. I asked him to pass my zimmer frame.

The scanning room was dark, I laid on the bed and some twinkly music played. I felt like i had just arrived for a facial !!! THey started to scan my neck and i drifted quickly into a light sleep. I cant believe this is available on the nhs.

Instant results revealed my artery is fine . I am officially normal ( apart from the dementia ;)

A week of hospital visits finally over , I went for lunch with my mum and sister and Heather who had been ~~trashing her grandmothers house~~ playing nicely at nanny's while I went for the scan.

I NEED a weekend !

MRI DAY

2009-09-18T09:01:00.000-07:00

Heather was admitted to Savannah ward at the Evalina Thursday for an MRI and Lumbar Puncture and some blood tests. A day full of frustrations. When we arrived although we had a bed booked and everyone knew we were there for the LP and MRI no one seemed to know what exactly they were testing for and what tubes should be used for the samples and where they should be sent. I was on my own as Mike had to work and couldn't get the day off. I'm fine with the procedures themselves usually but these added frustrations put me on edge and I'm aware that i can get quite short tempered with the staff when they don't appear to have a clue what they are doing. They finally agreed on what is what but I'm not confident and neither did they appear it that they have done all they needed to do.
My friend D popped in at lunch time .. bringing lunch ! and a smile and his usual calming influence. Thankfully he was able to stay for the worst bit where they put her to sleep. Not something you really want your friends to have to see but I'm really glad I didn't have to do it alone. It lightened the mood a little to have someone there who isn't as emotionally attached to the situation as I am . I don't know if he will read this , but if you are reading ... thank you .. you made a difference today .
D left and I sat and drank a cup of tea on my own waiting for the call to go to recovery. The time where your child is under general anaesthetic is like being frozen in time. You want the whole world to stop and wait with you. The call came and I was back by her side before she even really opened her eyes. She had been extra heavily sedated this time around and had been under for over an hour. We pushed her bed back to the ward as she lay smiling up at me . Taking it all in her stride she suddenly remembered she hadn't eaten for a very long time and asked for her dinner . That's my girl.
I don't want to go into detail here about the frustrating times that followed , the bureaucratic crap we then had to go over with regards to medication labelling and mrsa swabs both of which i refuse to be a part of as they are completely unnecessary procedures that just make more work for the already under pressure nurses. They all agree with me but saying NO causes a stir and although its LESS paperwork for them to fill in its paperwork none the less and raises questions with the management.
I needed to leave , I had parked my car at the end of a road near the hospital by a railway bridge in a secluded area of alleys and archways. I hadn't planned on leaving in the dark , on my own with bags and wheelchair I was starting to feel very uneasy and anxious . Heather was fine , wanting to get off her bed to play but the nurses insisted she must keep her cannula in and a minor disagreement over the time needed to recover fro LP ensued . You are required to lay still for four hours after an LP . Heather doesn't really DO still !
As it turned out , a twist of fate or perhaps someone somewhere taking care of me who knows .. D who visited at lunch time had lost his season ticket for his train home , it was found on the ward while we had been in recovery and he had to come back to get it so he could go home.
SO I didn't have to walk to the car on my own after all. Thanks again D !
I gave Heathers meds and went for a little walk to get her to settle before putting her in her car seat which she is never very keen on and less so with a freshly poked spinal column.
The Evelina is on The South bank of the Thames opposite the houses of parliament . Big Ben is lit at night and the bell sounds out across the city every 15 minutes.

Even after a day like the one I just had its hard not to appreciate its beauty . I just took a moment . for me . and she slept.

Then headed into the traffic jams as The Embankment road works and limehouse link closure and A13 traffic accident ground me to a frustrating halt again and again .

It was Friday by the time I got home. Just so relieved its over and done with and not holding my breath for results not holding my breath for anything . Unusually calm and relaxed .

impatient patient

2009-09-16T23:59:00.000-07:00

wednesday. I had a hospital appointment for myself today. Earlier in the summer I had a headache one afternoon . As the evening went on I got a tight burning sensation around my face and jaw and over my head . My face dropped slightly on one side. I have never felt a headache like it. A really intense migraine with pain radiating into my ear. I was certain I had an ear infection so went to the docs. He saw my droopy face and sent me to hospital. They did and MRI and some blood tests etc and this week I had to attend a clinic for the results. The doctor seemed to think I had had a temporary Ischaemic attack which causes a small stroke . But that I have recovered well. My face looked back to normal within a very short time about 48 hrs. Im still going with my own migrane theory as I dont think he really knew anything for sure and at 34 a migraine sounds alot more realistic right ? I was asked to return friday for a scan on my neck to check if there was any thinning of the main artery from the heart to the brain . More time in hospitals . Just what I need in my life . UGH .

Just how I feel today ..

2009-09-15T14:59:00.000-07:00

with thanks to good old Snow Patrol ...

We'll do it all

Everything

On our own

We don't need

Anything

Or anyone

If I lay here

If I just lay here

Would you lie with me and just forget the world?

I don't quite know

How to say

How I feel

Those three words

Are said too much

They're not enough

If I lay here

If I just lay here

Would you lie with me and just forget the world?

Forget what we're told

Before we get too old

Show me a garden that's bursting into life

Let's waste time

Chasing cars

Around our heads

I need your grace

To remind me

To find my own

If I lay here

If I just lay here

Would you lie with me and just forget the world?

Forget what we're told

Before we get too old

Show me a garden that's bursting into life

All that I am

All that I ever was

Is here in your perfect eyes, they're all I can see

I don't know where

Confused about how as well

Just know that these things will never change for us at all

If I lay here

If I just lay here

Would you lie with me and just forget the world?

......just forget the world

mind and body ..

2009-09-14T13:33:00.000-07:00

Ive not been well today . I woke up with a dull ache in my back and stomach. My pelvis feels like I've been kicked by a horse. Paying the price for an unusually long walk yesterday perhaps.

My mind is tired , weeks of this summer spent thinking deeply and analysing myself in the hope of feeling better about the future. Tired an vulnerable. Feeling pain in my heart that perhaps is unnecessary. Small things people say and do feel personal . But that happens when your tired and unwell anyway doesn't it ? I haven't got out of bed today , every inch of me aches inside and out.

My mind still ticking over it all feels much straighter this evening . At peace in some ways and in turmoil is so many others.

The post arrived late today . A brown envelope marked with the familiar post room stamp of Gt Ormond St hospital. GOSH .

The eye clinic specialist had said she wanted to write to our neuro regarding the appointment we had in the week. I recall her saying that the new eye movement issues could indicate some changes in the brain . It didn't really sink in I suppose I knew that and in my mind I was thinking seizure changes due to growth and medication levels , I actually didn't give it a huge amount of deep deep thought because we have been here so many times before I try to shut it out unless we have something solid to go on.

I didn't even expect a letter to arrive for weeks yet .

" I suspect the variable but definite intermittent unilateral vertical nystagmus that Heather is clearly suffering from is a form of seizure activity. My orthoptist and I have witnessed an episode today but can find no ocular cause for this abnormal eye movement. I am relieved to know that an MRI scan is booked for this week as this kind of problem unilaterally is often caused by tumour or lesion near the optic chiasm, please forward your findings on to me as soon as they are available. "

it goes on about her app the need for tinted lenses and the fact that her actual visual acuity when her eye is no bouncing up and down had improved.

In black and white it just hurts. She didn't write , it might be nothing , it might go away , its new and it might not last .. she didn't write it could be caused by tiredness or her mother might be imagining it .. which would easily annoy me as much but at least I could bury my head in the sand and believe that it might be nothing ..

please god let it be nothing , please . I love her.

making a break ...

2009-09-13T23:43:00.000-07:00

Our weekend plans had been made on Friday , I am not a big forward planner but Mike likes to have a timetable , much more structure to his life than is needed in mine. He doesn't like to change his plan easily. Trying to find out more about myself has had to include a degree of compromise . I do have some responsibilities of course and some are shared therefore a degree of planning and fairness has to come into it. I can't disappear to St Lucia for a week on my own without organising some childcare at least ( in my dreams! )

Saturday we had agreed was his morning to go cycling , as it turned out he didn't get up and go and then decided that he would rather go for a long run later in the day as he is training for a half marathon race . He ran in the afternoon and ~~faffed about with~~ tuned his bike and had his ME time as agreed while I cleaned. I didnt let on that I actually found the cleaning therapeutic. Although he may know if he remembers to read this. ah well .

Sunday we agreed I could have some ME time , I thought about getting up early and heading to the local resevoir to take some photos but I doubt I would get any that would be as satisfying as getting there at sunrise after the Leybourne Lakes photos and Im not quite brave enough to go somewhere THAT remote alone yet .. yet .. I have a feeling I am due to get braver !

Last weekend we had a meal before going to see *sister act* in waggamama in the Old Spitalfields Market in London . The market was closing as we had arrived but I had made a mental note to visit again . Perfect opportunity was here and so I checked their wesite to see what was on at the market on a Sunday . Luck was in , Sunday is the busiest day and all the stall holders are open . They have special events which this week included a display by Argentinian Tango Dancers . Perfect chance to get some interesting photos. Jessica immediately asked if she could join me . Im torn. I love MY time with my camera , I love my time with my camera with another interested adult who will discuss the hows and whys of the image . I love my time as a mother and Im not sure I want to mix the two. Can I really let go of being her mother for long enough to enjoy her company as a photographer . She is getting really good , fabulous in fact and is possibly on the verge of putting my skills to shame. Would I worry too much about her safety in a busy london market to relax and get what I wanted from the excursion ?. She asked if her friend could come too and if they could have some time off on their own . Perfect compromise . I said yes . So we set off and had a nice day , we seperated for a while giving me time to take some photos and look around some of the stalls ~~and buy chocolate brownies and eat them without getting caught~~ Continuing my mission to discover what is it that can make a stranger so beautiful .

We met for lunch and then headed on the tube to Hyde Park , where I took the girls to speakers corner to experience probably some of Londons oldest and insanest traditions. They quickly learned probably all they ever needed to know about politics religion racism and hate .

We moved on swiftly to find some beauty in the small things in life . The geese on the water , the flowers in the gardens of Buckingham palace. I believe in appreciating the small things. I often miss the bigger picture in doing so , but those who stand back and view the bigger picture often miss the detail. And with it the beauty .

The light was starting to leave us and we headed home , across London on foot aching by the time we finally got on a train and heading back to Benfleet station we were all exhausted and it was dark.

At home Mike had an up and down kind of day, but he and Heather are building a relationship that is much needed and I am happy in general with the lessons they are both learning about each other. He had managed to cook a wonderful curry !! which was eaten in seconds . Shattered by the physical effort of the day my mind wandered over the detail of it and I finally slept much later than I had expected I might .

a little piece of heaven ..

2009-09-12T23:59:00.000-07:00

Cleanliness is next to godliness .. or so they say

I cleaned my kitchen today , and the little room at the back of the house , the dining area and the laundry room . This part of the house can be shut away from the rest with a locking stable door. Mike was supposed to get up and go out on his bike early this morning , we had planned our weekend to give us both a little *me time* and some time together as a family. Time doing things we needed to do and hopefully something for each of the girls. Last night I took Lindsay shopping and Heather stayed with daddy and he gave her dinner and put her to bed etc . Jessica was out with her friends. I'm starting to try and give Mike more time with Heather or his own . I think they need to work on their relationship without me around . She has learning difficulties but she also has an amazing ability to manipulate us both and play one off against the other . I realise a lot of this is because she uses our close relationship as a weapon to get what she wants from others. He feels its a good thing too . It got to be right ? I feel the need to have time with the older girls on my own too ,and hopefully they will come to know me better too.

Heathers carer came to take her to the beach for a couple of hours and Mike went running after forgetting to get out of bed for his bike ride ! What was going to be a quick tidy round became a major deep cleanse of the back of the house. I listened to music loudly and probably disturbed the neighbours playing air guitar to bohemian rhapsody .. Queen is cleaning music ! .. it was all coming together Mike had returned and showered and was watching Tv in the other room , Lindsay upstairs getting ready for her party. Jess had decided to venture to the beach with Heather and the carer , and then I realised .. it had been hours ! They were supposed to be two hours and it had been almost four. I picked up my mobile to find that the sounds of Queen had drowned out my mobiles twinkly tune and I had 8 missed calls . Always makes your heart jump when you have a child with epilepsy and you realise you may have just relaxed your way through an emergency. I hadn't . In fact the carer had lost her car keys on the beach and they were patiently waiting for the green flag to replace the locks and get them on their way home... a minor yet expensive hold up that gave me just the time I needed to get dinner on and finish my chores. I brought the lap top to tidiest room in the house curled on the playroom sofa and drank a glass of wine , ate some lovely chocolate sticks and relaxed.

We ate dinner and Mike returned to his TV program , teenagers went off to parties and sleep overs and an exhausted beach blown Heather slept in her bed. I stayed curled under a woolly blanket making small talk with friends on msn messenger and listening to more relaxing music .. and allowed my mind to drift into the deepest chasms of thought it has for sometime. Until the early hours of the morning .. I didn't sleep but it was almost sleep .deep deep relaxation . Felt to good to allow myself to slip into sleep. heavenly . perhaps the saying is right cleanliness maybe next to godliness I should clean more perhaps ;)

shop aholic...

2009-09-11T23:45:00.000-07:00

My middle daughter Lindsay is something of a shopaholic. Its quite possible that she is not my daughter at all and that in fact there was a mix up at the hospital when she was born. There is perhaps a barbie doll blonde somewhere nearby despairing at her wiry haired tom boy playing in the dirt at age 13. Whilst here I am wondering how on earth any child of mine can find beauty in such material objects as handbags and shoes. To the point of OBSESSION . She has a party this weekend .. a 14th birthday party for a boy from school and she would like a new dress. The fact she has this in her head now means that she will not rest until she has the perfect dress for the event. She started about Tuesday planning where she may find the elusive dress and what it might look like .

Not being a big shopper myself I tend to know what I want , its usually functional , go to the shop and buy it and come home again.

Lindsay on the other hand , had to drag me around every single shop in lakeside shopping centre that might have a dress she liked. Make a short list of dresses , revisit many shops and dresses and try them on , compare dresses at opposite ends of one of the countries largest shopping centres . And then of course buy a pair of a leggings and a shirt in the last shop because she couldn't make a decision on the dress and will sulkily wear the sparkly leggings that she knows will be accepted by her friends because they all have them .

It was exhausting .

I cant do a thing right when it comes to shopping with Lindsay. We simply don't like the same things. I suggest things and get told I know nothing , I'm asked my opinion only to be told it doesn't count .. I feel completely out of my depth. And old . And boring . And frumpy . and Fat .

I tried to cheer myself up realising after the first few hours that making her happy was a mission impossible unless I had a million pounds going spare to have a top designer make her the perfect dress . I started looking at the sizes above an 8 for Lindsay and wondering if this or that would suit me . I ended up buying a few bits much to her HORROR ! This is about her NOT me did I not know that ??? What I had hoped might be a trip that contributed something toward the journey back to being friends with daughters as well as their mother had instantly turned on its head and put me back in my designated chair as mother , taxi , bank , washer , cooker , cleaner .. a whole bunch of labels without a face that I can recognise as my own .

Beautiful stranger..

2009-09-10T05:54:00.001-07:00

Driving to GOS on Wednesday I passed through Barbican and into Holborn, trendy coffee shops buzzing with people the sun shining , traffic littered with cyclists of all kinds. A real atmosphere apparent even from inside the car. But more striking was the sheer number of absolutely BEAUTIFUL people ! .

I get lost in little day dreams sometimes , deep thought . I started to wonder exactly what it is that makes a person beautiful . No two were the same , but all beautiful for different reasons.

And I wished I had my camera. I wanted to capture them , to look at later and try to work out what it is that actually makes someone beautiful .

Of course beauty is in the eye of the beholder , but I wondered if there are people that are more attractive to others for particular reason . What really does BEAUTIFUL mean ..

I'm going to try and capture it more often with my camera ... find some beautiful strangers .

GOSH !

2009-09-09T14:04:00.000-07:00

I am a little shell shocked by our most recent visit to GOSH ( Great Ormond St Hospital ) gosh !indeed. Ive had concerns for sometime over Heathers ability to eat & drink. On the surface she seems to cope well with her food but she has been avoiding drinking fluids to the best of her ability for sometime now. Watching her closely its quite clear that she finds it quite difficult.
Last winter she had numerous ( almost constant ugh) recurring high temperatures in march she spent a week in hospital with chest infection. The xrays indicated she had aspirated something to cause the infection. So yesterday we had a feeding assessment with a special feeding and drinking therapist at GOSH. She listened carefully to Heathers swallowing as she sipped from an open cup , drank through a straw and spout cup and watched her very carefully. Within minutes she said she had seen enough to know that Heathers swallow wasn't safe for fluids. We continued through the foods we had brought with us as she talked me through the mechanics of swallowing in minuscule detail. Her conclusion was that Heather should no longer drink any non thickened fluids . The impact of which I suppose we will find out over the coming months. We have a new list of things to do and not to do , foods to eat and not to eat .
We left the feeding therapists and moved on to our eye clinic appointment which didn't hold any better news I'm afraid . One eye has had intermittent nystagmus and movement issues over the last few months . The eye consultant is almost certain that it is in fact seizure activity and will be writing to the neurologist with her findings. Heathers pupils didn't react correctly to light during the examination so they have recommended that she wear darkened glasses when outdoors in the sunlight. She recommended an immediate MRI scan as the changes in eye movement and seizure activity could of course indicate brain changes. This conclusion had already been drawn a couple of weeks ago and we are booked into the Evalina next week for MRI and Lumbar Puncture .
I don't want to write too much about how I feel after these appointments . I just don't really know if I'm honest . Many times over the last few years our hopes have been lifted and dashed , predictions of a terrible future given and the retracted . So I am very wary of allowing this to affect me too emotionally. We shall wait . And we shall see . Time will reveal more .. as it does with almost everything in this life .

the end of our summer ..

2009-09-07T12:50:00.000-07:00

Its been a great summer overall . Lots of things have changed . I have changed for the better I feel. As a couple we have agreed to try and move forward on an even keel. Each trying to take responsibility for ourselves more .Whilst allowing each other the space to do more of what we each enjoy . Hopefully this will have a positive impact on our time together and with the children.

We have both enjoyed the summer this year Mike and I . Various little camping adventures have been the highlight for us both. I vowed after Special Kids camp that I would use my camera more and that I would not ever forget something that important to ME ever again.

The school went back for two days this week which gave me time to plan and pack for the final camp of this summer.

A much smaller affair with friends we feel really comfortable with .. very relaxed weekend ahead .

We set off for kent only an hour and a bit from home but far enough to feel like an escape .

Early Saturday morning D and I had agreed to get up and try and get some sunrise photographs at the nearby Leybourne lakes . We couldnt have picked a better weekend for camping or sunrises if we had tried.

Then we headed to possibly ( imo) the most beautiful place in the world. Which I know seems a little strange to others but I personally feel something in Knole Park in Sevenoaks in Kent that I have never felt anywhere else in the world. I cant explain it in words . Im not sure anyone else will ever completely understand it but D had the patience to humour me at least and maybe .. just maybe .. got a bit of the idea after a little while ! At the very least he was too polite to say he didnt understand what I was on about .That'll do.

We arrived back at camp to a small miracle ! Heather was still in bed at 10am .. Mike had managed a lay in and the teenagers were still in their usual unconscious state. L was up but didnt seem to stressed with her morning or her handsome boys and the day was ready to start in a pretty easy going relaxing manner.

In the afternoon we visited Groombridge place and wandered through the enchanted forest , the children ( and the big children ) played on the giants swings and I happily snapped away with my camera all weekend . A nice pub dinner on the way home saved anyone the strain of cooking or washing up!

Sunday morning Mike made breakfast which he loves to do and the rest of us ate it which of course was a terrible chore .. but we survived . All too soon the weekend was closing to an end and with it my summer . The mist came over Heather and she slipped into a seizure. Suddenly the fun felt much more OVER than it had just a few hours before. I gave her midazolam which helped for a few hours but the jerks continued into the journey home and really until she slept for the night on Sunday evening. I wish I knew more about WHY this happens to her I wish I knew how to make it stop. We have some appointments this week that may lead to some answers . Im not holding my breathe .

Thankyou D & L and boys for a lovely weekend .. Thanks to D for making sure I didnt end up being the body in the lake , and to L for giving me more confidence to trust my instincts with Heather .

Roll on new year! our next holiday with great company!

Responsibility , ownership and blame ....

2009-09-03T06:13:00.000-07:00

A leap of faith...

It’s high time I took one. I’ve been thinking through a lot of things recently and hoping to make changes to my life. I started with the obvious or at least what everyone else who lives outside of this house thinks is the obvious. Being "mum" is great but being ME was put to a swift and painless end by having children and allowing myself to become so absorbed in everything THEY are .. Who I AM, became a mystery. A reminder of that person I once knew sparked recently and a small fire started burning. The flames are spreading.

As well as feeling responsible for my children I unwittingly started to take responsibility for things that in truth are not MY responsibility at all.

In our teenage years (yes we've been together THAT long!) my now husband and I were quite reckless at times. We moved out of our parents homes at a young age (in my case 17) and not because home wasn’t a brilliant place to be but it just seemed the natural thing to do as we wanted to be together all the time and neither family had the space for that . We both worked HARD.. We have always paid our own way in life. We earned well and we played hard too. We bought our own home as neither of us could see the point in paying rent. Good friends, and pretty equal in every way. Life was pretty good.

Partying was *our thing* in the late eighties early nineties the rave scene was big, we were a part of the ecstasy generation. It was fun, and we were free.

Roll forward 3 years and we had settled down, I was pregnant with our first child and M had a steady job in the city. Nights out changed, we no longer danced ALL night and drank gallons of water. I stayed home with my belly and Mike stayed late with work friends in London, having been in the navy for 6 years before me he wasn’t unaccustomed to BEER.
He has always had a problem with alcohol. Perhaps not the usual problem people expect. He is NOT an alcoholic, if he was it would be easier to get help I'm sure. Certain drinks affect him in strange ways. He loses his memory and self control. He can be easily misled, or will attempt dangerous / stupid things! He is usually OK until he goes to bed then wakes needing the toilet at which point he will act out whatever he has been dreaming about. It is a recognised sleep disorder.. And a little ironic that we are now having H investigated for serious sleep disorders. If his dreams are good, it’s all good. He can be guided back to bed or to the toilet ~~if he hasn’t already used the nearest receptacle!~~ . If he has been watching something violent on TV or reading an action filled book things can get a little scarier. Sometimes a lot scarier . Thankfully I'm no wimp and I can handle him pretty well.. Or least I could. It wasn’t long until we had a second child and my mama bear instincts stopped seeing the funny side of this behaviour. I explained the things he forgets to remember videoed them too and begged for it to never happen again. And for a few months it didn’t.
Years passed and the cycle had remained much the same. It didn’t happen often, maybe twice a year.. Sometimes three times. Many would say once EVER was enough? I made excuses, he can’t help it ... and he really can't once he has gone past a certain amount of alcohol. But an adult can learn those limits and take responsibility for not getting to that point. If they can’t then they should stop altogether.
I don’t want to get into examples of what can happen when the limit is exceeded but 3 years ago there was a bad run of incidents. Mainly connected to M returning to his previous place of work. Back to the same company he worked for in the city when we first set up home. There is undoubtedly an alcohol culture in parts of the city. Many of the banks and brokers etc encourage client relationships over a liquid lunch. After work parties and nights out keep up the moral in a bleak insurance environment I'm sure. I was angry. MY life had changed too, I have a disabled child, who has frightening seizures/ unexplained neurological disorders and another who has autism and at that time was displaying challenging behaviours. Life was no party. I was damned if I would be caring for anyone else incapable of caring for themselves. I put my foot down with a firm hand and took control. I laid out rules and regulations about where he could and couldn’t go . Made out the consequences would be severe and rightly so they should but not as threats .I can see now that I made myself responsible for what he couldn’t find it in himself to be responsible for. Everything was spiralling into free fall.

It was just a few months later that I answered his phone while he was in the shower getting ready for a night out at a work do with male colleagues. I heard her voice and as she burst into conversation about the plans for the evening and my heart sank. He had lied to me. I know now it wasn’t as bad as you are probably thinking right now.

Over time I became much harder to live with I'm sure and life in this house wasn't easy for anyone. I don’t want to make excuses but I do understand how the situation arose totally.

We talked about what we wanted and we moved on. Me taking control, him doing his best to comply in an attempt to drag back what had been lost. TRUST

So on to today. Drinking incidents have been minimal over the last two years; the worst I have experienced I had to remind him of the way to the toilet or the bedroom after one or two too many .The odd swearing at me or grumbling sleep walking. Okay I admit, last October one quite bad incident that I blamed myself for. I should have stopped him and I got distracted and lost count of his drinks enjoying my own too much perhaps. He felt bad for letting ME down. Leading me, to feel some how responsible. He has for the most part successfully avoided the drinks he knows affect him worst. I have been there with my beady eyes, counting and throwing looks when its time to STOP. I have vetted almost every move and the outcome has been successful in most part. He doesn’t do the work social events at all really and it has been noted by his colleagues. The worry is what they are led to believe. “My wife doesn’t like me drinking” ... “my wife doesn’t want me to stay in the hotel because I have to be home for the children" He says to me that this is what he wants too but somehow the *blame* always lands at my door. I am the brakes on this machine they call marriage. He seems a lot happier in himself but this has been one of the many responsibilities that have added to my stresses. That has stifled ME. I have been fighting for so long it feels. Knowing things are hard at home I actually expected him to leave. He didn’t. So I figure he wants to be here with me and our girls. This hasn’t been an adult relationship. I've been controlling and taking responsibility for everyone in this house because I couldn’t deal with what might happen if I let go. I have been mothering EVERYONE in this house.

I am ready to let go. To face the consequences, whatever they may be.

Whether he is ready or not the time has come to take responsibility and deal with the consequences of his actions. I won’t be stopping any of the planned work events. I won’t ask him to drive home instead of staying overnight. I have made my boundaries of what *I* can deal with in my life very clear. SO we have talked and I have handed him the ropes. He can use them to create pretty works of art or he can hang himself with them. It’s NOT my responsibility.

I can’t blame the girl on the end of that phone anymore. She had no responsibility to me or my children. I am not her concern. Nor is she mine. If he chose to take that path it was HIS responsibility I cannot force someone not to feel what they feel. This is and always has been about our relationship no one else’s. I cannot change what the future holds by force. I cannot control the outside influences. Trying to just made things worse for everyone. Life has to be about choice. Responsibility. Ownership . NOT blame.

Sometimes you have to let go, to see if there is anything worth holding on to. Release your dove and hope it makes home in your garden.

It’s an all round relief.

life in the war zone ...

2009-09-01T15:04:00.000-07:00

Blogging can be a bit like writing the horoscopes for me .. I try to include enough information for people I know and who know me to interpret what I write in their own way .. while trying to remain philosophical enough to provoke thought in the mind of a new reader . Sometimes I share snippets of fact and photographs blogging where we have been and what we have done and other times I write more meaningful posts. Some times I am probably a little too open and allow too much of myself to spill onto the page. Sometimes allowing my own thoughts to spill a little motivates me to change the way things work , the way things are and will be in the future.

Living my life isn't always easy, yet I look at people living in a real war zone and my life is a breeze in comparison .. I have worries , a few more obvious than others. I learned over a long period of time to prevent others from seeing my war wounds. I learned not to allow to myself to think too deeply, and I developed a habit of walking brazenly into minefields with an air of arrogant audacity about me. I couldn't be blown up. I wear minefield shoes ( these actually exist btw! )

People can only hurt you if you let them right ? so don't let them ....

Recently the war zone started to feel like a lonely place. Exploding mines caused minor injuries. I march through it and other wounded soldiers show me their wounds , the soldiers in my very own regiment want to offload their war stories and feel the relief of letting it go . Not realising of course that my own shoulders are carrying quite a lot already and perhaps just one more bag will be too much. A glance towards what looks like a peaceful place leaves me aching.

I suppose we all crave peace in our lives , but for each of us where we will find that peace must be different. We have a habit of intertwining ourselves with each other , and what some find peace in, others don't. Sometimes finding your own peace means taking a part of someone else's and that in itself depending on how much thought you give it can add to the strain. Recognising yourself as a person is important. Finding others who respect you as a person equally so. A mutual respect for others young and old often means you have to compromise on something. Within this can ANYONE ever truly find peace ?

welcome to the war zone.

I would really like it ,if you have a little time please respond to this with your thoughts in the comments ..

happy mondays ..

2009-08-31T12:28:00.000-07:00

Bank holidays are great aren't they ? the weekend extended .. the following working week shortened .. bonuses all round. We were blessed with sunshine and so headed off to Castle Hedingham after a quick *what to do* google revealed a jousting display!

We had a really nice day barring some very small niggles , Heather has grown so much! We are awaiting delivery of a size 3 wheelchair for her. I have to say its not a thought that fills me with joy . Pushing her across the bumpy gravel and hilly grounds of Hedingham Castle is not a job for the feint hearted or weak . Mike pushed most of the day. the reality is that we may not be able to explore these kind of places in the same way for much longer . We took her off the beaten track into the forest surrounding the castle .. to seek shelter from the sun and escape the crowds , and stares and glances of the general public which for whatever reason they happen some days I could just live with out them y'know . I'm sure no harm is meant but after a week in the safety of camp with special kids its hard NOT to notice people gawping at your child as if she was an alien in a pink space craft rather than a not so small child. I needed to relax and moving Heather to quieter spots gives her and us the freedom for her to have a little wobbly walk and socialise in her own way with a smaller audience. We bumped into maybe two or three other families on our walk around the lake and each gave her a little time.

Little niggling thoughts wondering about the future and how the world will receive my girl spin through my head on a daily basis , it never really goes away.

Schools are due back this week and it all feels a little *back to reality* for my liking.

I am pleased to say in an attempt to drag the dregs of Summer out we have booked a little camping trip for next weekend .. I know it has to come to an end soon but I'm determined to make the most of this summer and doing the things we can while we still can . Life has a habit of changing and throwing all sorts of surprises upon us . I think it would do me good to live a little more for the moment .

Sunday ... a picture post

2009-08-30T12:31:00.001-07:00

2009-08-28T17:14:00.000-07:00

a few pics from the day ...

GOOD GRIEF!

2009-08-28T07:09:00.000-07:00

As the parents of a child with special needs I'm sure many of my regular readers will have heard enough about the grieving process to last them well past their own death .Grief and the stages of it are often used to describe the way a parent feels when they have a child with a disability . We are supposed to grieve for the child's lost abilities , for the child we DIDN'T HAVE and for the losses that the child we do have will experience in years to come . Sold short in life . Fact .

The truth of the matter is we probably DO a little grieving to start with for the child. In time we appreciate much of what our children CAN do and we come to terms with it reasonably so. Small particles of grief will explode like fireworks intermittently through out the life of a child with special needs. Burning brightly in the eyes of their parents and those close enough to care to see, fading away until the next inevitable display .

Less talked about , less publicised and recognised is the grief for ourselves. After all we lose out too don't we ? People assume when you have a child that you have planned it well, in all perfectness and that a child with a disability must come as a terrible disappointment .But few recognise the loss of the parents future or the parents hopes and dreams for themselves not just their children. I for one didn't plan . I didn't give a second thought to what sort of child I wanted. I certainly didn't for one second consider that I might have a child that needed me to care for her for the rest of my days . Who looks 20 or 25 years into the future when planning anything except the mortgage they hope they will never have to extend and truthfully have no guarantees of ever being able to pay in full? If I didn't plan and didn't think things through properly I guess I have no one to blame for this except myself . Oh don't worry this isn't a self pitying "throw myself off the bridge its all my fault " type post . I'm fine really I am . That's NOT who I am .

I set myself out after camping last week on a mission to *find me * .. one day in it was starting to feel like a game of "wheres wally" .. tiny little me lost in a crowd . I started to wonder ... *to decide who you want to be you may have to forget who you are* . I still think there is something in that . Who I AM is all that I am to everyone else in the world. To myself I have become nothing. no one . Reminds me of the children's book by Mick Inkpen " nothing" . Don't read it if your grieving !

I picked up my camera on Wednesday and decided to go on a little "wheres wally" adventure. After organising child care etc of course . Just to see if I could forget who I am for a few hours . It really worked well and lots of little twists of fate brought me into contact with people who each made me feel a little more ALIVE .

I learned some small but quite shocking things about myself . Some you may find it hard to believe.

Its TEN YEARS since I last stepped onto a bus . Having teenagers and being *mummy taxi* I heard myself saying to one of them recently that " you miss the world in the car " in an attempt to persuade her that a bus was a better form of transport. I was actually nervous standing at a bus stop . Perhaps it was the significance of having left Heather with a carer all day and "running away" from the ME that everyone knows. Or it could have been fear of making a fool of myself after a phone call with a friend earlier revealed that neither of us knew if buses still had conductors or do you pay the driver? A group of teenagers at the bus stop . This could be a minor but still embarrassing moment. There was a time I would have been snapping pictures of them confidently not caring if the attention was unwanted . Now it crosses my mind they might be armed. My camera stayed in the bag

FEAR has entered my world .

I got the bus to the local station and decided to get on the first available train. The first train was heading for London. Its been even longer since I ventured to the city alone. What if i get mugged ? what about terrorists ? where the heck did all this fear come from ? This isn't the old me . The Old me has been lost for sometime. I'm not ready to grieve for something that might be still alive inside this body of mine. Facing the fears I carried on and took my camera out of the bag . It wasn't long before I took a few grab shots of passers by . It felt good .

I spent much of my day taking photos of memorials and statues and hiding out from the rain in a cafe . Another unheard of thing in my life , drinking alone in a cafe , eating alone at lunch. Each of these felt like a small achievement towards forgetting the me that everyone else expects to me to be. A step on the road to finding out more about what I want from this life . Talking to strangers . I know its something we tell our children not to do . I have to confess its something I DO , always have but in recent years less frequently . I talked to a man who had been sleeping rough for a long time . I talked to an old lady on park bench and some children chasing pigeons in the park. I like to see the reactions on peoples faces when I talk to them , the reception is usually positive. There are an alarming number of people walking around the world in silence refusing to acknowledge their fellow human beings with even a glance. Let alone a smile .

I headed home early evening but I missed my connecting train and then my connecting bus. Only to discover that buses no longer run the route to where I live after 7pm .Of course I missed it. I decided to start walking and realised very quickly I was tackling another of the fears I have developed in my adult life. Walking home in the dark . As a teenager and young adult I would walk home at 4am from a nightclub in the cold dressed for summer with no coat and often no shoes , it never occurred to me back then that anything terrible could happen to me.
With parent hood comes responsibility to others and an overwhelming desire to self preserve kicks in and with it comes FEAR . I popped my headphones on turned my music up loud and walked . Its quite a walk really , along a lane with trees on one side leading to open farm land and a main road whirrs in the distance . After a few hundred yards I started to relax , listening to the music . The wind blowing in my face and my mind wandering over the days events , the people I met and for a short while I realised I had forgotten who I am to everyone else .

Satisfying .

TWO WEEKS ON

2009-08-24T10:32:00.000-07:00

Time I updated this blog really.

Its really hard to know if what I want to write should ever be written, if this is the right place to do so . Or would I be leaving myself too open to judgement ? I'm not sure but I will try to write enough for anyone reading to understand just where I am right now .

Special kids camp is a good place to start. Its where I left this blog last time i visited ..
Its been 4 years + since we ( the original trustees) sat around a table and discussed the possibility of turning a small Internet group of just 64 families into a charitable cause that would reach out to others . To grow the special *something* we had discovered when we found each other . We went ahead and I can honestly say I think it was probably the best decision ever made .
Before this years camp I was asking myself "who am I ?" any regular readers will have read it and wondered if I was well . I don't know that I was all that well .

I do know that I am getting better .

Friends , acceptance , laughter and love are all so good for the soul . Each is available in abundance with my Friends from special kids

This year I saw some of our oldest friends and their children in a new light . Growth has brought about more beauty and confidence in so many of the children .. now growing into young adults. Watching my own young adults struggle with the transition from childhood. Their denial of their mother as a person in her own right has hurt me immensely .. yet at times over the last week I felt it dissolve away until it was barely there at all .. the relief in those moments was much needed

The mums , my sisters on this journey . You've watched me for a few years now , seen me rise and fall and crumble .. and you've swept the pieces of me from the floor and held me together until I stuck again so many times . I'm not sure you knew you were doing it but you have . I feel safe with you all in a way I can't really put into words .

The future is a scary place , I can become absorbed in what I think the future may hold. The fact it isn't my chosen future yet its not one I want to change for so many reasons. That's hard for someone not facing the same certainties to understand.
These thoughts and life in general have swallowed me whole in recent years . I was lost , so lost in fact I didn't realise .. I had adjusted to the darkness like an owl .

It was starting before we left for camp , I was asking myself the questions . I was feeling the urge to melt into the background and watch the world for a while .
To release myself from daily life . And we set off for Special Kids Camp 2009.

I realised shortly after we arrived that I had forgotten some important things . My camera charger , batteries and memory cards. I tried not to let it show . But I was inexplicably devastated. Another big part of me not LOST just forgotten. How could i do that to myself ?

SO i picked myself up , smiled and moved on .. as I do
I started with my usual overzealous antics , I hit the wine and the pimms and chatted as confidently as I could. Its the best way to hide you know. When everyone is looking hardly anyone sees. But this year , I felt it. So many of them saw me. ME . The lost ME. not found completely but peeking through nervously.

I laughed , a lot . From almost the moment we arrived. On the second day the seizures came . Nothing scary or too harmful but the mist came over Heather and she slept for the most part of the day between the spells of abnormal brain activity . I was crying inside . I often wonder if anyone really believes me how much this affects my girl . The reassurance came from someone I truly trust , that I am right to keep searching , keep pressing for answers .

On Saturday after a day of silently and painfully wishing I had my camera to capture the priceless moments happening all around me the balloons rose swiftly to the sky and I remembered how lucky I am.

I talked to people , I laughed with friends old and new , pausing for longer than usual sometimes and realising that sometimes its nice to see the moments in between the camera stills.

I watched Heather be greeted with open arms and smiles by everyone, children with all kinds of disabilities included in everything all week and I wished that the rest of the world could feel what I felt standing back on the hill looking towards the camp.

As the week came to a close the time came to say goodbye. I could feel it building inside me since the day before . I didn't want to leave . I didn't want to go back to the future and all that it holds for me . I could feel myself changing all week . I need to carry on changing . I thought leaving the safety of the special kids camp would mean it would stop.

I said some tearful goodbyes and I'm sure that others wondered if I had finally lost the plot . I probably have :)

Since I got home , I have talked to Mike more about this . He was surprisingly very supportive . Or not so surprising perhaps.. its the second time in a week I have thought to myself that " miserable probably isn't very attractive"

So its started .. I don't know where it will take me , I haven't found ME yet .. but the glimpses of a person I once knew very well are enough to make me seek her out again .

Thank you my friends .

Packing frenzy ..

2009-08-10T09:23:00.000-07:00

We are leaving tomorrow at 10am for The SPecial Kids InThe UK summer camp 2009
CANNOT WAIT !!!!

heres lasts years pics just to lets you all see what a wonderful time we had !

Perseverance

2009-08-09T14:52:00.000-07:00

My youngest daughter is a pretty determined little girl . She has some days where she is much wobblier on her legs than others . Today she had a really GOOD day , she persevered with numerous difficult tasks at hand. We went to a BBQ and as many of the other children raced around the sloping garden navigating their way at speed over decking and steps and plant beds my girl made her way slowly , surely , taking care not to hurt herself . Its unusual for her but more common since she hurt her back a couple of weeks ago. She wanted to join in . She couldn't keep up. But she never gave up trying.

For a couple of weeks her sheer determination to do something has been nibbling away at my heart . She has spent a long time watching other kids come to our garden and hit the swing ball. Shes been trying hard , practicing lots . Wobbling falling and staggering when tired and missing the ball completely . Some neighbours kids have laughed . Shes been hit in the face with the ball numerous times. I took it away and she cried . Begged for it back .

Our regular carer has been on holiday and my niece has been helping out this week to cover her .
She has marked a little area on the grass for H to stand on and has been practising *keeping the distance* and gently popping the ball towards her bat .It got better as the week went on. She too has persevered and displayed patience beyond many !

There's a lot to be said for determination and perseverance .

competition ..

2009-08-08T14:58:00.000-07:00

Not much to say about today really . my head has been buzzing with so many thoughts this evening.

Its been a somewhat irritating day . Mike and I have been squabbling about just about everything . His alarm woke me at 6am . He had already woken me numerous times through the night with his snoring. I ~~resisted the urge to suffocate him~~ realise he has been a bit under the weather and the ~~mild cold~~ flu like symptoms he had last week was probably not helping with his snore. The alarm was set because he wanted to go out on his bike. He turned it off and rolled over. At 6.30 his second alarm went off ..I turned it off and he decided to sleep on . Leaving me wide awake . As annoying as this sounds and believe me it was . I did lay and watch the morning mist lift and the sun dry it out . I heard the silence . no traffic noise at all this morning . Just a lone wood pigeon cooing gently to himself for hours. But i didn't sleep again .

Mike got up eventually and i had been reading something online for a while by then. Heather had a few small seizures on waking and we debated who should go and get her meds . Then who should bath her , who should get up first and so on , you get the picture ! I stayed in bed and have been reminded of that fact on numerous occasions through the day. The whole day was kind of like that . Competitive.. constant refusal to do anything that was *more* effort than I had displayed. Grumps. Mike chose to mow the lawn. Chose . There fore this apparently means he doesn't have to partake in other activities of the day . I needed his help to carry some things from a shop for me . I asked him to come and he told me i should go alone as he had cut the grass . It started to become obvious that for some reason he was trying to annoy me. I eventually persuaded him to come with me and on arrival at the shop he offered to stay in the car with H while I went in. I pointed out that I wasn't able to carry the boxes alone. He mumbled something about not wishing for a family outing to carry out a simple task . Shame really I had thought a bit of family time might be quite nice. Ive been alone with the children for most of the holidays I had looked forward to the weekend . He had too I suppose but for different reasons no doubt . On the way home i suggested we stop and pick up a few other last minute bits for our holiday next week .. not my brightest idea.

We came home and Heather wanted to play with the swingball in the garden . I asked mike to play with us for a while and he really wasn't keen. Heather quickly lost interest though I was absolutely thrilled she even managed to hit the ball a couple of times. And then the competition really started. He whacked the ball hard, I'm no wimp and quickly slammed it straight back. The days frustration was forced into every impact . Each time the ball met the bat it got more and more aggressive. Then we suddenly noticed we had an audience . A small group of our neighbours were gathered along the street watching us play and laughing at the aggression involved.
I won . Yet I was the one with the least anger .. the least will to win ! .
Mike is still grumpy and has been nit picking at my every breath since.

I just feel sad . This wasn't what I wanted from my weekend. I hope tomorrow will be a better day . I'm totally emotionally exhausted from the bickering all day. I don't even know what it was all about.

Recovery

2009-08-07T00:32:00.000-07:00

Friends are the best medicine are they not ?

A really good night sleep and time with friends today was exactly what we needed. This is Heather and her friends entertaining us in a local cafe. As you can see she is doing just fine after yesterdays seizures.
Time for me with friends too. Friends who understand how wonderful AND how difficult life can be. It doesnt get much better than that.

Seizure day .

2009-08-06T00:13:00.000-07:00

3 weeks 5days .

That's how long it had been since Heathers last significant seizure.

Today should have been a great day. I had booked a carer for two hours in the morning to allow me to catch up on the jobs I should have done yesterday . She arrived at 10am. There was another knock at the door at 10-05 am . A second carer !? It would seem I had gotten a little confused somewhere along the line and booked two carers . The second to arrive is very relaxed and said , well instead of going home give me some jobs to do and I'll help you for a while. Not something I would ever ask of her but if she offers its rude to say no thanks right ? My house has never been so clean so fast. Four hands are definitely better than two when it comes to cleaning , and washing , and hanging it out and bringing it in and ironing it etc . Carer no1 took H out for a couple of hours. But she came back early and said she was very hot and sweating. Heather flaked into my arms and almost immediately started to jerk. It was as if she had been holding on , not letting it get her until she was safe with her mummy.

The carers went home and we laid together on the sofa , and they came with force. She mumbled something under her breathe . Which i asked her to repeat so I could hear .

Very clearly she said " fuck off fit leave me alone" .. I normally would have chastised any of my children for saying such a thing . But not only was I thinking it too I was kind of impressed with her awareness of the impending seizure and the true hatred she had for it.

She dozed on the sofa for the next 8 hours drifting between a deep sleep and strong clusters of jerks. Her left eye bounced to its own little melody. Her levels of consciousness seesawing for what felt like forever. But when she slept between them the sleep was heavy and peaceful. I could almost see her body recovering just in time for the next wave.

I gave her midazolam and she slowly returned to a reasonable level of consciousness . Baggy tired eyes and wobbly on her legs.

It had been 3 weeks 5 days since the last .

I hate seizure day .

Party girls ..

2009-08-05T12:59:00.000-07:00

Julie and the boys set off home about 10am today. I had a list of things I needed to do . I WAS going to do them. The phone rang. It was a friend reminding me that our local children with disabilities team were holding a summer party. I said I wasn't going , but she told me they were meeting others to follow to the party in a car park down the road at 12.
Heather had seemed a bit twitchy and tired first thing but about 11.30 she seemed more lively and was asking to go to the park. 11.45 i changed my mind we hopped in the car and went to see our friends at the party . Last minute decisions often seem to work out the best ones for me.
Lots of Heathers school pals were there and her two best buddies danced and partied with her for almost two hours ! A few times she got into her chair and didn't seem quite herself but it was stifling in there.

Was so good to see my friends too . I have been quite antisocial the last few weeks for various reasons and I needed to see them . It made me feel good to have a laugh with the girls .

As soon as got into the car H was asleep. Exhausted .

I arrived home to find my infuriating teens had more or less just got up and were eating *lunch* at 5.30pm. I despair of them right now , they are staying awake half the night chatting and giggling and then sleeping the day away. Not wanting to join in with family things very much at all. I know its normal teen stuff but I hate not feeling as in touch with them as I used to . I hope they will join in with the rest of the world during daylight hours at camp next week.

boys

2009-08-03T14:01:00.001-07:00

ok so that was a heavey heavey deep post last night .. sorry about that .. but thats me im afraid .UP doooown .. UP

Anyway .. today I am tired , partly because Heather kept me awake half the night- probably more than half the night .

I tidied the house for fear that my visitors may leave in disgust .. and Julie and two of her children .. the boys .. arrived about 2pm. I dont have any boys so its a nice change for me .. we havent done much this evening .. just a walk along the seafront in the sun .. Zach and Jess skated and Charlie and Heather irritated each other ;P Julie and I dont NEED to say much .. a mutual understanding of what it is to CHILL for us both .

I needed a bit of time out .. I think Julie did too .. I hope being here has been a little break for her.

LOST .

2009-08-02T14:50:00.000-07:00

Who am I ?

how often do you ask yourself this ?

.. is it something parents of children with disabilities ask themselves more than *regular parents* ? because when you have a child with a disability who will need someone to care for them for the rest of their life and yours it changes your whole outlook. Our responsibilties and ambitions flipped upside down in a way no *normal* child could turn things.

I am usually a confident person . A friend recently called me "socially capable" and I took it as a compliment . Given I have one autistic child and one with severe communication difficulties at least I am reassured that I may be a good role model for them. And there I go again ..I shade myself and my own pesonality in who I might be to other people .

What can I do for you ? how can I help ? thats me all over . I need to work harder on thinking about what I want , who I am and what others could do to help me. So often over the last few years I have found myself overwhelmed by my load of worries and things to do and when I start to tackle the stress in the best way I know how ( by writing a list) all too often it turns out that I have over comitted myself to what I can do for others . By "others" I mean anyone , I include my husband and my children in that too . I have to because so much of my life orbits their existence and happiness. I rarely stop to think about what makes ME happy and what makes ME who I am .

And there you have it . I am lost from myself . Everyone else sees me in their own way but I have no self image .. I dont know who I am anymore , I dont know what makes me tick. The really stupid part is that I only have very shallow thoughts about who or what I want to be like . I dont like the way I look , I dont like myself very much at all really. I have no idea who I want to be.

I still have my sense of humour and people make me smile alot .. they dont always know they are doing it. I am fascinated by human beings and could spend hours watching people go about their day . Id like to be invisible from them all. Just watch and think .

I feel needed not wanted . Two very different things .

Its nice to feel wanted.

and incase your wondering I am not drunk !

I know I love my family. There lies no question I love them enough to sacrifice all that I am .All that I have ever been. But that doesnt mean I have to. They havent asked me to. I don't imagine they expect it . But I doubt they have ever really stopped to ask themselves who I might be to anyone else but themselves.

Where do I begin to find what I have lost ?

Spontaneous camp ...

2009-08-01T12:43:00.000-07:00

Thursday evening I really felt the urge to be away camping again .. school holidays are feeling quite hard work already . Its getting harder to keep Heather occupied and out of trouble at home !.

Mike was open to the idea of a last minute camping expedition so I googled ! and found a small farm campsite in Kent that allowed campfires ( guaranteed to keep pyromaniac teenagers occupied) and we decided we would take our small tents and go for just one night . The weather forecast didn't indicate we would need wellies so after Mike finished work on Friday off we went !

Thursday ...

2009-07-30T12:28:00.000-07:00

Heather went to the park as she is feeling much more mobile .. she enjoyed crawling through the tunnels and we tried to fly her kite but the wind was too erratic ..

Nice to be outside .. feeling the urge to camp again .

Edward scissor hands ...

2009-07-29T17:02:00.000-07:00

We saw the gastroenterologist man at GT Ormond St Hospital about Heather's swallowing problems .. he has referred us on to their speech and language / feeding therapist and told us to stick to certain food consistencey's and use straws for drinks until then . which we were anyway . So the slts will assess her swallow and if they decide its dangerous for fluids he will give her a gtube . At this point I nearly fell off my chair .. like hes getting anywhere NEAR my girl with a gtube ! then he asked if we would like one just for meds .. . Seems a bit drastic to say the least . Bit fed up really .. our pediatrician referred us there .. waited 4 months .. he is referring us to the next person in line and they will see us and no doubt make an appointment for the video flueroscopy and by the time we actually get a decision it will be a year or more since the original refferal when we all know whats needed and should just get on and do the test.. get the answers and move on with life . it all drags on so unecessarily . The story of our life with the NHS Im afraid .

2009-07-27T13:08:00.000-07:00

some picstures that amused me from the weekend .. random ! Mostly taken by Jess .. shes getting good huh !?

2009-07-23T03:11:00.000-07:00

today was a blurrrr .. I finished packing the bit for camping and cleaned the house so that my next door neighbour doesnt die of shock when she pops in to feed the cats at the weekend . Our carer worked her last shift before leaving for her holiday and Heather had a nice time popping to the shops with her to get the last few things I need for going away .
Mike has been at a Golf day all day ..

camping tomorrow .. if we have a signal I may blog ..

helping hands

2009-07-22T20:01:00.000-07:00

Heathers back seems lots better today . Or at least the ibuprofen seems to be working well. I am beginning to pack some bits for our planned camping trip this weekend and she is getting into mischief . I should have done all this while she was more immobile ! Getting nowhere I decided to enrol some help. Our main carer is taking two weeks annual leave starting Saturday which leaves me with no help for the most part of our summer holidays . I don't have time to train someone new right now . I also find a new carer can feel a little like having someone else to look after for the first few weeks . All I really NEED right now is an extra pair of hands so I gave Heathers cousin a call to see if she had any time off over the summer holidays . It turns out her planned summer job fell through and she would LOVE to help out ! I rang payroll and quickly organised how to go about paying her for her helping hand over the few summer weeks and she started this afternoon ! .. Yippee ... being related means she doesn't mind doing a few other little bits either. Heather had a short nap and she hang out the washing and cleaned my bathroom without me even asking . Exactly what we need !

Im almost packed for camping ! Cant wait !

ouch

2009-07-21T15:35:00.000-07:00

Ive lost count of how many times Heather said OUCH today .. or winced or yelped cos she moved in a particularly painful way . My poor girl . she just looks exhausted with the pain in her back. She had a great sleep last night and stayed in bed til gone 10am this morning. Her carer arrived at 11 and we showered her together . Its not really a two man job but getting he on and off the shower seat without hurting her back was much easier with two of us . Then they played a while and I cleaned the floors and bathrooms before taking them to the local farm park for lunch . Because Heather can only really sit in her reclining chair on a sheep skin at the moment and it doesnt fit in the carers car . All went quite well really until the speed humps leading into the farm . UGH . She was hysterical by the time we got there and in no mood to feed sheep or goats or anything much else . I left them at the farm for a while and nipped to the bank to pay in some cheques . One of those jobs I tend to put off . This particular time I have been putting it off since um christmas ... i know thats really bad you dont have to tell me . Two of the cheques were past the use by date and one it turned out was from LAST July ..oops . Oh well Im sure my mother in law doesnt mind that I never cashed her cheque ! . I Need to make a new years resolution about going to the bank . Internet banking has alot to answer for .
I went back to pick up heather and her carer but she was still pretty miserable and had refused to eat anything. She was begging to go home. So home we came and I topped her up with calpol and neurofen .
Lindsay has spent the day out shopping at Bluewater with her friends ( the birthday money burning a hole in pocket ! ) she is staying out tonight at a sleep over :) she seems a bit more cheerful since we talked about the school letter.
Jessica spent the day preening herself it seems . I came home to find her with immaculate hair and make up . I wondered if i had just missed a boyfriend sneaking out the backdoor . Two of her friends arrived and also preened themselves . They took photographs of each other looking beautiful and then went home . Teenagers will always be a mystery to their parents I suppose.
The digital generation I call them . The record everything on digital film , in photographs and video . They copy cut and paste , edit ,enhance and reproduce the images to create their own virtual perfection of themselves and then plaster it all over facebook , my space , msn and bebo , twitter and of course blogger ;) then spend hours every morning before school trying to recreate this perfection in the flesh in hope of not breaking the illusion set to their peers . Absolute madness .. and NO before someone comments I NEVER did that !!! I did lots of other things but the teenagers of today are far too busy trying to reach image perfection to get into the kind of scrapes I was at their age ! I remember at about 13 hanging around until late at night in the woods near my house with a group of teenagers all around the same age . Building a rope swing over a drop in the land . We spent hours building a bonfire below it and almost as many swinging ourselves dangerously over the fire . We stank .. we were dirty our hair was a MESS we drank horrible sweet cider and shandy and imagined ourselves drunk. We didnt have mobile phones or msn or digital cameras to record the lunacy . Probably a god job . I am scared to allow my girls quite that amount of freedom but I really wish I could encourage them to be a little more careless sometimes .. in a nice way of course !

Jessicas friends went home , Mike came in from work. We ate and he started working again . He just went up to bed . I miss him when he has to work like this. Late at night , early starts. Its not always the way but I still miss him when it is . Looking forward to going camping this weekend and just spending some time with him . Dragging the girls away from the hair straighteners and make up. I really hope Heather is more mobile by then too . After the calpol and neurofen this evening she was much brighter and walking around alot more . She even perched back on her haunches sitting gently back on her own feet for a while . She winced as she moved out of each position but definitly much better when her body is well stocked with painkillers.

im tired and its tomorrow already .

nite all x

getting to the bottom of things

2009-07-20T16:28:00.000-07:00

Lindsay has been very down . I have been a bit worried about her really . Something is bothering her . Today I found a letter hidden in her bed addressed to " the parents of " it was from school . At the end of year she did some tests with the learning support team . It seems the results arrived on her 13th birthday possibly the day before . To tell us and her that her reading comprehension age was age 11 and her spelling age 9 . A kick in the teeth she didnt right now . She has been bottling this up . She is really very worried she said she is stupid and she hates it . She hates everything about school and its all so hard . She had the numbers in her head .. her comprehension is two years behind . Heathers recent language comprehension test showed she was only two years behind . Of course I know its completely different and that Heathers learning disability is far far more complex than could be measured by a simple language test . Lindsay doesnt really understand the tests but read the numbers and thought I wold be angry with her and think that her ld's were worse than Heathers and worry etc . Im not in the least bit worried about her really . She is a beautiful girl with such an amazing spirit about her . People from all walks of life just adore her and I have no doubt she will be just FINE in the grand scheme of things . One little worry is that she doesnt seem to have the same confidence in herself and I know that can be a very slippery slope .

For now I am going to do my best to encourage her to relax and enjoy her school holidays .. times flies and these summers cant be brought back for them . I remember mine so well .

let down of a day ..

2009-07-20T12:17:00.000-07:00

oh the school holidays .. I was going to DO so much ! That's me all over really , I often think
" Today Im going to work wonders and shit miracles " usually I end up doing what feels like NOTHING productive .. and what I DO manage to get done is rapidly undone by the children in a fraction of the time !

So this morning I was allegedly having a lie in . in theory this should have been possible. Last nights party went on very late and Heather didnt go to bed until after 10.30pm . She was up again before midnight and again on two more occassions during the night . The wide awake and demanding toast at 5.30 am. Well demanding after she had stopped crying and complaining about the pain in her back . I SO know the feeling and its heartbreaking to see her struggling to move around and in pain . She has been drowsy on and off through the day .. I think its part tiredness part pain because when the doctor pressed the damaged part of her coccyx tonight her eyes rolled out of her head and I really thought she was going to faint. I padded her wheelchair seat with a sheepskin and pandered to her every wish for most part of the day . It took me what felt like hours to get her dressed and ready to begin the day . Or rather the clean up operation from last night . Who would have guessed that one bar of chocolate in a chocolate fondue could feed 15 girls and paint two walls .. emulsion doesn't go that far for goodness sake !!! ..

We popped to the chemist to pick up regular medications ( this is actually quite a big job :( we had a huge box it seems to grow every month) and then on to the GP . A double whammy appointment .

I am pleased to report that my face ache has really subsided , the doctor even said i looked better and that reassured him that I didn't have a brain tumour .. I'm so glad he didn't mention that last Fri when my face drooped and my head felt like it was going to explode ! I still have to go for an MRI scan as the trigeminal nerve is still sensitive and causing some fleeting shooting pains up my nose , in my ear and under my teeth .. he seems to think it is connected to migraine and should be pretty easily treated.
The he had a look at Heathers back . Bless her little heart we had to lift her to the bed and she winced and whined as he prodded . She explained that she went "weeeeeeee bang" down the slide . Her coccyx is very bruised at the least ( which is apparently extremely painful ) as there is a visible purple and black bruise its possible and likely that its fractured. Apparently there is no real treatment for this so the hospital wont x-ray . It could be anything from 2 to 6 weeks for it to heal .. he said to come back if she is still suffering in a couple of weeks just so he can check it out . She asked for a rubber glove ( most kids like a lolly or sticker don't they ? not my girl! ) he obliged as usual and packed us off with some painkillers . We like our doctor and I trust his judgement..

I was supposed to take a card and present to my friend Debbie as its her bday .. I will be belated now .. I was supposed to take up my new white trousers and pick up my car keys from Lindsay's friend , i had washing that needed doing and many more little boring tasks lined up ..

i didn't get any of those things done ..

Heather finally found a comfy position in her chair so i gave her a microphone and we tortured the neighbours with our singstar skills .. high school musical never sounded so good I tell you lol :)

Oh and because I didn't get to deliver Deb's card we made her a video of Heather singing happy birthday . She was quite drowsy all day and it shows in the video but clearly she was still okay as she didn't forget the words ( unusual) and she remembered the sign for Debbie ! hmm there is some serious loss of video quality here .. not sure why that is ..

last man standing ..

2009-07-19T15:33:00.000-07:00

its almost 11.30 the last teenager just left :) I swear I was almost in bed before they reached the end of the footpath . Just settling into my comfort zone when the phone rang . The last child to leave took my car keys home with her by accident as she has a similar keyring . helpful .

glad its all over for another year .. ok it prob wont be a year but im glad its over anyway !

Lindsay is in bed .. she has been smiling alot this evening so thats my task done ! she has been counting her birthday money .. she did rather well out of this whole thing . Glad someone did .

I am exhausted !

must sleep now . night all .

2009-07-19T12:08:00.000-07:00

we're hiding out in the bedroom . Mike and I . The house is now over run with teenage girls . Jessica's friends arrived . We are under a seige of singstar , gossip and general scary teenage stuff . Mikes burying his head in a cycling magazine until hopefully its all over .

STOP ... breathe ....

2009-07-19T10:40:00.000-07:00

type ...

there are 15 girls in the other room eating BBQ food and chatting listening to music etc .. not the chaos I imagined . Lindsay can be an odd child . So I shouldnt be suprised that she has some odd friends right ? two arrived a whole HOUR early .. apparently mummys clock was wrong . The washing was never so swiftly kicked into the laundry room :)

SO party is underway and I stopped just for a moment .. to hide here and type .. and to contemplate the fine line between laughing WITH and laughing AT Heather and wondering about the intentions of both from other kids .. I can hear it now as Im writing she IS funny but her funny ways are part of her disability and the giggles from some of the girls are making me feel uncomfortable . I would run to her rescue but she is having too much fun and is blissfully unaware of the discomorting giggles . the dilemma seems to be .. rescue her or rent her out as party entertainment ! .. kerching"

Back to the party ...