How long?!

Carolyn Voisey's avatar

by Carolyn Voisey

So. Sam, as I have mentioned before, is a tall little dude.  And is now far too big for a SN buggy.  He’s had the Ormesa Bug since he was small and it’s been brilliant – but for me the biggest plus was that it didn’t look like anything other than as super-duper buggy (assuming you ignored the oxygen cylinder hooked over the handle bar). However, now that his legs dangle over the foot rest, and he is obviously not comfy in it anymore, the time has come for a revisit to wheelchair clinic to review the options available.  And I *hate* wheelchair clinic. 

It isn't just that this is possibly one of the last places I wish to be with my precious little boy, but the entire experience from requesting appointments through to actually getting out at the other side is horrendous. It really can’t be just us, but in total the process from asking for an appointment to getting his new chair took 9 months. I kid you not. Apparently, you have to ask for a *particular* type of appointment. Who knew?! 

And even when you have made it abundantly clear that this appointment needs to be a double one with the OT and technicians required to measure him up properly, they still book him in for a routine check. Three. Miserable. Times. It drove me nuts.  It’s not like I have anything better to do with my life than repeat myself over and over again then sit for hours in a waiting room with a fretful little dude having lots of seizure activity, only to discover that the relevant people aren't in that day. 

Poor Sam, he was always the shining light at these appointments, as if he knew that Mummy just needed *something* good to hold onto, so he always had a smile for me, or would give me a lovely cuddle after we were done…  I often wonder who takes care of who when things are like this! But we got there in the end… a month ago the new chair arrived in all its superb bright green glory! It’s wonderful for him, he is so much more comfy in it than in his old Bug, it has padding in all the right places to cushion him and means he can sit in it happily for long periods of time. And it’s a wheelchair. And THAT is the bit I’m struggling with, four weeks on. I know he needs it and that it why it hurts so much; because I don’t WANT him to need it. When he was a baby we keeps going thinking he’ll walk in his own time – well he’s almost 4 and we've nearly cracked sitting, but crawling/walking? Long, long way off. 

And seeing the chair there, in our front room, makes we want to burst into tears because this is NOT what I wanted for my baby.  It is not the life I had imagined for him, and for all the love and joy he brings us every day, I feel guilty because I can’t make it all right for him. 

But gradually, I’m learning to accept the new chair, because I see how happy he is when he’s sitting in it and we’re running round the park pushing him, as he squeals with excitement and waves his arms like a loony smile We adapt, but that doesn't mean it is an easy process.

Now, excuse me but I’m off to play with the light of my life before he heads out to school for the day ;)  Hope everyone has a good day xxx  

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