I write today's blog as I often do, whilst Abigail is in her session Of Aqua therapy. I also want to do a general update as to how far we have come on this journey of a life time.
Life has changed so dramatically in this last year; To see Abigail use her walker to get on the school bus in the mornings as opposed to being pushed out in her wheelchair. To see her sat in assembly cross legged in line with all the other children from her class, whispering to her mates as opposed to sat on the side with the staff in her wheelchair.She gets herself from her walker into a classroom chair in the mornings as opposed to either remaining in her wheelchair or sitting in some kind of specialised seating. At home when she sits at the breakfast table having walked there holding one hand she is able to push herself into the back of the chair without me having to lift her.When we go out she wants to use her crutches and walk, previously she would have been in her wheelchair.
To aid physio and increase core strength I have purchased some scooter boards by Tumble Form. This has been fun for both girls to play together or for Abi to work with her private physio Caroline. Of course I too, have been out there on my tummy scooting around, just incase you saw me and wondered who that mad woman was!! We also purchased a wobble cushion, big enough to stand on, to practice balance. Abigail is also doing very well with playing games on the Wii to challenge balance, along with co ordination at the same time.
Abigail can now balance, bend down, pick up a shoe in each hand and come back up to standing maintaing her balance all the while. A huge achievement.
Using a bilbo seat Abi has practiced the following. The running commentary shouldn't need any further explanation.
The other major change is how this surgery totally changes the child's personality and general well being. We always knew Abigail hated being disabled as she used to tell us regularly and we have all shed many tears with her. Those who live in 'disability world' will know it affects the whole family. Husbands go to work and often don't even disclose facts like this about their home lives. Siblings can chose very carefully the friends they bring home, particularly as they get older and are more aware of the world around them. I'm not sure if this is good or bad, but Abigail can no longer remember being in a wheelchair. I remind her because it's important for her to realise how far she has come and how much progress she has made. She has no recollection of the "hard days" in St Louis when we forced her to walk to get some strength in her legs. For me this is a blessing, she can't remember.
Last night (24 June), like last year, we all attended an event at the Colston Hall in Bristol. Abigail belongs to the School Choir and many of the Schools in South Gloucestershire get together to perform on stage. It is supported by Comedy Acts, dancers and musicians. It was splendid and vastly different from last year, when Abigail was at the front sat in her wheelchair. This year she sat rows back on stage and for each song was able to get herself from the seat to standing, again and again. How proud we felt.
I recently asked our little six year old Talia if she was happy with her life and if there was something she could change, what would it be? Her instant answer was that she would change Abigail into 'not being disabled'. She was coming from the angle of not being able to do things like ice skating, all together as a family. Of course I haven't got a magic wand and I can't make this happen but what we can do for our girls is give them the best life, with as many opportunities as possible. We will support and guide them to be the best they can be but most of all I want them to be happy.
It was shortly after Talia said this that an opportunity presented itself. When the unions collaborated together to strike for pension rights, Abigail's class remained open that day but most of the other classes closed. Taila planned her special day with Mummy. We were going to go ice skating! I write this as a special inclusion and dedication to Talia as sadly she misses out on so much due to our family circumstances. My husband, their Daddy works long hours in London coming home each evening at their bedtime, or later, leaving me as main carer and as such it is hard to give two girls with very different abilities the independent opportunities each seek from life. Each evening Talia has to take a back seat as she watches Abigail get total attention during physio, in addition to the extra help she normally has. It's been hard for all of us, I wish I was an octopus with more than one pair of hands or that I had a hologram of myself so Talia gets more of me!
We had a blast skating and by the end of our session we could both skate, nervously around not holding on to each other or the side of the rink. I was so proud of her, and myself, as I certainly didn't think I'd be able to do it!
On the 20 June 2010 Abigail was all over regional TV at breakfast, lunch and tea time ahead of the BBC West Inside Out documentary. That morning I was asked if I would appear LIVE on Points West ahead of the show. I hesitated momentarily because it was a daunting prospect, with no opportunity to fluff lines in order to do a retake. However, all of this is for Abigail and for raising awareness to all those families who are yet to learn of SDR and all the benefits it can provide so of course I had to do it! The rest of the family remained at home, whilst I was supported by my wonderful Julie who has been an absolute tower of strength from the outset of this wonderful journey. I will post the interview when I receive the footage as it was only available on IPlayer for 24 hours after broadcast.
The documentary also revealed that we had met Beau and his family, from Cornwall. The first ever SDR (Dr Park version of the surgery) ever performed in the UK and I feel honored to have met the Britton family. We continue to keep in touch, just as all SDR families do, whether they've had their surgery in St Louis or the Uk. It's amazing to see just how large this family now is!!!