While I like to think that nothing has to change when having a special needs child, the reality is that everything is just that much harder, and while I wouldn’t change her for the world there are things that I miss and wish were so much easier.
I don’t actually mind the endless trips to hospital or the physiotherapy sessions, it’s the small things that bother me the most.
I miss just leaving the house to pop to the shop with just my purse - ‘popping’ anywhere has now turned into a complete mind-drain because I cannot be bothered to take down the wheelchair, lift it into my car, lift Bella from the house to the car, strap her in, set the wheelchair up at the other side, shop, then do it all in reverse just for a pint of milk.
I remember when trips to the park or soft play meant I could sit on a bench and relax while watching my child run around and tire himself out.
Now trips to the park fill me with dread – quite frankly they are exhausting, and I know I will leave feeling a little heartbroken.
We have three different seating systems, the wheelchair, a standing frame; toilet chairs and a walking frame all taking up room in the downstairs of our house.
We moved to a bigger house and still haven’t managed to find homes for everything.
Trips to the seaside, or new places - we have to really plan everything now.
We don’t want to end up somewhere where Bella just has to sit watching her brother do things she can’t be included in.
We also have to take into account things like rain.
Wheelchairs, rain and grass do not go well together.
With AFOs it’s just an impossibility, we often have to buy boys shoes or else just chunky, large, boots.
Bella’s foot shape won’t keep ‘normal’ shoes on so we can’t even buy pretty ones for play.
With a husband who works away it’s difficult to find a job that will let me have numerous days off in the week to go to hospital and physiotherapy, work around school hours and quite frankly I don’t have the energy.
I miss the social side of working, the normality and the routine of it.
Despite everything being so hard, I know it’s important to keep going and making the effort to do ‘normal’ things.
Not only for Ollie & Bella but so that others can see that we are carrying on.
Until people get used to seeing disabled children in all walks of life Bella will never really be accepted.
If your child has a diagnosis of Cerebral Palsy what level of the GMFCS are they?