Elin's party- Just a couple of snaps :-)

Five years ago on Monday......

We simply had no idea if Elin would live. Each 24 hours was precious and miraculous.  You know what? Each 24 hours is still precious and miraculous.  I could not look at these photo's for the longest time, because I remember what I was thinking when they were taken and I could not go back there, in my head. But now they give me joy because on Monday Elin turns 5 and when we took these photo's we had no idea if the day would come. 5 was the 'age' they gave us. She may not make the next 48 hours, even if she does she may be so poorly she might not live to see her 5th birthday. Well, she did.  And she did it in style. So, so much to celebrate. Thank god for you, Elin. We love you with all our hearts. Happy Birthday.

We already had our miracle...

I suppose you have to remember that things were different 50 years ago. Elin would not have survived. It's only medical advances in about the last 15-20 years that have meant she is still with us today. 50 plus years ago, even 30 years ago, there simply would not have been the technology or advances in medicine to save her initially when she was born and then keep her alive. There were, consequently, a lot less severely disabled children around. If any children similar to Elin did make it through, parents were actively encouraged to 'give them up' or place them in homes where they could be cared for by medical staff. So all things considered you have to realise lots of elderly people simply aren't used to dealing with children like Elin. It's just not in their realms of comprehension. Not all elderly people are like this of course, just some. They love Elin, of course they do, dote on her in fact. But they constantly ask the same questions, hoping for a different answer. Will she ever eat orally? Will she speak do you think? Can't you take her abroad to get her 'fixed'? No. My answers are always the same, but they take no discouragement, especially if they have seen something on the news or in the paper about a miracle story (inevitably a child with a completely different condition or prognosis to Elin, but this seems not to matter) . How can they realise how these questions pain me, not in themselves but in there continual repetition? My answers will never change. There is no 'cure'. The person in the village who had a car crash and was told they would never walk again and is now absolutely fine with no issues bares no resemblance to our story. It cannot happen for Elin. The miracle has already happened, because she is still here and she is still breathing, that was our miracle and I'm pretty sure we won't get dealt another one. It's not like I don't want to be hopeful, there's plenty to be hopeful about, but within the realms of what we know to be possible. I can even learn to stretch the boundaries of what might be possible but I cannot spend my life wishing for the impossible. Not only is there simply nothing worse than false hope, but it feels like a betrayal. It's hard to explain. I suppose ultimately I want everyone to just finally accept Elin for who she is, and that the prognosis cannot change, but the way we view it can. It's a hard but necessary lesson to learn. It's to continually wish things were different, or hope a doctor in America somewhere can wave his magic wand over her that feels like the betrayal, it's like saying you want her to change. Of course I wish things had been different at the start. Of course I wish she had the life she was meant to have and that she deserves, but until someone invents the Tardis for real or can turn the clock back five years and change what happened the day she was born I will stick with counting my lucky stars every single day for what we have got, not what we haven't. “We must let go of the life we had planned so as to have the life that is waiting for us”-Joseph Campbell

Elin listens for Daddy coming in....

I love this! You can clearly see Elin listening for, then looking for, Daddy when he get's home from work :-)

An alien from the planet technology...

Today work started on Elin's ceiling tracking hoist for her bedroom/bathroom. An amazing piece of kit that cost thousands of pounds (thank the lord for DFE grants) which should save our backs and provide Elin with an amusing ride in the process. Hoorah. Oh- did I mention I hate it?? I have a total and completely irrational hatred of the 'The Hoist' (it even sounds alien and sinister!) A hatred which far exceeds any feelings about other specialist inanimate objects that are necessary in our lives now. I even put off getting one because I could not bear to have it dangling in the corner of Elin's beautiful room like an evil science fiction- esque spider. Looming over us like a constant reminder of technological intervention eventually needed in Elin's life just to get her up every day. A reminder of hospital wards and homes, like the old folks home Elin's grandad lived in during his final few years with us. Not for my daughter, The Hoist. I don't want The Hoist for her. But choice is something I have learned to relinquish to a degree in our funny topsy turvey world. It doesn't matter whether I want it or not, I have to have it. Elin will need it. The Hoist must become part of our lives. One day I will not lift Elin as I do now, almost wearing her on my front like a koala bear, one day she will be too big and I will have to lose that extra bit of contact, that part of her still being my baby. So to me I guess The Hoist is an unwelcome but necessary divider between myself and Elin. However as sure as I am of my hatred of The Hoist I am equally sure that like everything else acceptance will reluctantly follow and in a few short weeks I will probably forget it's there, or wonder what we did with out it. I may even one day be singing the praises of The Hoist. For now though I shall park it in the corner of the room and refuse to give it eye contact. I'm not ready to be it's friend yet. As a literary heroine of mine Scarlett O Hara once said "I'll think about that tomorrow".

A new perspective

So Elin has been at her SEN school for almost 2.5 years. I can't believe it! Yes it's a cliche, but where does the time actually go? I remember when she started like it was yesterday.  Anyway, since Elin started school we have often commented how great it would be for Caitlin (Elin's sister) to get to see her at school. She spends so much time with her at home, but to see her at school is to understand her world entirely. For Caitlin, who is 15, school means something very different than the experience Elin has each day, for obvious reasons. However it's not just the  curriculum variation that we wanted her to appreciate. Seeing Elin in school I think, can be a little light-bulb moment. It's not just about fully grasping the potential Elin has and the full range of activities which she takes part in each and every day in order to help her reach this potential. It's about seeing the other children too, and feeling the atmosphere in the classes and the tangible love and caring that passes back and forth between the staff and the children. It's not really something that you can explain, or take a photograph of. It's just in the air. And it's Elin's world. After all, technically during the week she almost spends more awake-time in school than she does with us! Given all this, it's mad that we had not managed to get Caitlin there sooner. However, Sports Day at Caitlin's school provided an opportunity for us to take her out for an afternoon without worrying about her missing too much. So, this afternoon she came with me to Elin's school. Needless to say she loved it as I knew she would (you can't not, really). I loved it too, not because I haven't been there  a million times but because I was seeing everything with fresh eyes, through Caitlin's perspective. A sensory story in the dark room (or is it the light room? I'm never sure) about the Billy Goat's Gruff involving lots of textures, sounds visual stimulation and did I mention FUN? Then texture rhythms where the children listened to some music (Caitlin massively impressed with Beyonce and Will.I.Am featuring on the soundtrack to this activity!) and have different object and textures to feel/ stroked over them. Elin LOVED this and so did we. It was actually quite moving for Caitlin (and me of course but I cry at the drop of a hat!) to see how much Elin is adored by people outside of the family unit. I think it made her glad, as it makes me glad, that she has a place and people like this in her little life, who care so deeply about making her day fantastic, every day of every week, of every month. Lucky, lucky us. Finally Elin took part in a parachute music song which was very exciting for her and her friends and again, more sensory stimulation. To end our visit we got shown around the rest of the school, meeting the amazing kids and the fab hydrotherapy pool and soft play area. Caitlin at this point wishing she wasn't in mainstream school anymore I think!! It was a lovely afternoon and what strikes me is the school didn't have to agree to it (can you imagine that happening in mainstream? I teach there and believe me it probably wouldn't) but in typically accommodating fashion school understood and encourage close  relationships between home and school- in particular with siblings-and allowed Caitlin this glimpse into her sister's world when she is away from us (this unchartered territory, this mythical place 'Elin's school' which is now a reality for Caitlin and a frame of reference for her during conversations and news from Elins school day in the future), and we are made up that they did. Such a little thing. Yet such a big thing for a teenager who loves her little sister more than anything and vice versa. I will leave you with a text I just got from Caitlin  " Thank you again for giving me the opportunity to go to Elle's school! It was lush, honestly, I LOVED it xx" Says it all, really :-)

Father's Day

My name is Elin, five I’ll soon be
my start in life not the best it could be,
The person who`s made things easier for me,
is you who is more than a dad to me.
A crutch to lean on as I can’t walk,
you are my voice because I cannot talk.
I always have you right beside me,
you`re more than just a dad to me.
Whenever mum has her days of feeling down,
you make her laugh and wipe away her frown.
There`s no one else who I`d have to be by me,
you`re more than just a dad to me.
You nursed me when I was in my hospital bed,
I could see you hid the worry and dread.
You keep your spirits as strong as they can be,
you`re more than just a dad to me.
Others will never know how difficult it`s been for you,
you never moan, and there`s nothing you won`t do.
There is a lot you need to do for me,
You`re more than just a dad to me.
Looking forward I hope the future is bright,
for my special Daddy won`t give up the fight.
My name is Elin, five I’ll soon be
You`re more than just a dad to me.