I thought I should write a post about how things are. Yes, Caitlin is getting a wheelchair. I think everybody who I've said this too who doesn't know much about spina bifida are totally confused as to why she needs a wheelchair. "But she's walking now - why does she need the wheelchair!?!" is usually the response I get when I mention she should be getting her wheelchair in the next couple of months.
"Because her legs get tired easily and she will need a wheelchair for long distances." I say.
"Oh right I see, so how long will she need the wheelchair for? I take it as she gets older and practises more walking she won't need the wheelchair anymore?" they say.
Ummm, nope I'm afraid that's not the way it works folks.
Let me take you right back, maybe if I explain things a bit better people will understand more. Bearing in mind I'm still learning about spina bifida, I've only been on this journey for 3 years, I'm not a pro just yet! So while I try to explain I apologise to the old pros out there if I state something that isn't quite right, but I'll try my best :)
Lets start with a picture of the spine/spinal cord.
As you probably know the spinal cord controls all the nerves in the body. There are four divisions, as stated in the picture, cervical, thoracic, lumbar and sacral.
Spina Bifida is when there is a hole in the spine, the bone doesn't join together and a part of the spinal cord is then protruding through the back. This part of the spinal cord will be damaged while baby is in mum's womb and as a result, weakness and paralysis will occur. Caitlin's opening on her back was L4-L5. That's in the lumbar division, as shown in the diagram above. So from that part, right down to the tail bone, Caitlin's nerves were damaged. If you look at the picture below the places marked with any of those mix of letters and numbers (L4, L5, S1, S2, S3, S4, S5) that's an area were Caitlin has weakness/paralysis and little or no feeling.
L4 starts at around the knee, right down to her feet and those sacral nerves control her bowel and bladder. Because these nerves are damaged, this prevents muscle development because the impulses don't travel well. I just found that out recently from one of the spina bifida forums, I always wondered why Caitlin had very skinny legs and now I know its because of poor muscle tone in them. The nerves that are damaged can't send the "use those muscles!" messages to the brain, and so the muscles waste away. Regular physiotherapy helps and I do stretches & exercises with Caitlin everyday to help but there's only so much you can do. So Caitlin is always going to have weakness from her knees down. She can straighten her knee out pretty well, but not fully. I don't think she's much feeling from her knee down, prehaps a little in some parts, but generally when I tickle anywhere below the knee she doesn't react. Her feet are almost totally paralysed. You can probably imagine how difficult it is for her to actually walk. She gets so tired so quickly as her legs are weak and her feet don't really function at all.
Yet she is progressing. One thing I have learnt on this journey is never say never. But I also have to be realistic and this is were the wheelchair comes in.
The wheelchair means that when Caitlin is out and about and her legs get tired her wheelchair is there for her to hop into and get on with what's shes doing. She does have her walker, but when we are out for the day she would need to have rests. I do have a buggy too, but shes outgrowing it and the best part of the wheelchair is that Caitlin will be able to move it herself, go were she wants to go...be independent. Much better than me pushing her around in a pram.
The possible issues with the wheelchair...I have to be careful that Caitlin doesn't become too reliant on it, that she stops walking and becomes more dependent than she needs to be on the wheelchair. So I'll have a rule - her wheelchair won't be used in the house but will stay in the car and will only be used for long distances. Of course this may change as she gets older. That's the other misconception people tend to have...that as she gets older she won't need the wheelchair as much...infact it's quite the opposite. The likelihood is she will need her wheelchair more as she grows. The reason being, she is going to get heavier as she grows, that's more weight to carry as she walks and it may get to the point were it just becomes too difficult for her, in which case she may choose to use her wheelchair more often. I remember Caitlin was 2 weeks old and we seen the SB doc who said that with Caitlin's level she will have major bladder & bowel issues, will need a wheelchair for long distances and when she becomes a teenager she may decide to use the wheelchair full time. I was pretty clueless about spina bifida when Caitlin was just born and thought the same as what most people think now, that as she grows she will become more mobile, not less. But it seems that that's not the case. And I'm okay with that now. I will do my best to make good choices for her when she's too young to make them herself, but when she's older I'll support her whatever she decides to do, because it'll be her choice!
Right now she's excited about getting her "wheels" as she calls them. I've asked her OT could they have pink in the wheelchair & make it all girly and she said that shouldn't be a problem, woohoo! I never thought I would get excited about my daughter getting a wheelchair but here we are.
The only other thing I'm worried about regarding the wheelchair is other people. A lot of people assume if your in a wheelchair, you can't walk at all, which is often not the case. If I'm honest I'm nervous about the reaction people will have if Caitlin gets out of her wheelchair and walks. I'm worried people will think "she doesn't need that wheelchair!" "She shouldn't have one of those" or things like parking in disabled spots and people staring and/or making remarks as she walks to her wheelchair and sits in it.
There is a lot of ignorance out there and I've seen thousands of people liking a photo on Facebook (even my friends!) of a man standing at a bank machine, a wheelchair beside him and the caption being, "Benefit Fraud!" I mean that guy could maybe stand for short periods, even walk for short periods but need his wheelchair for long distances, like Caitlin will and I would really hate for people to think that way of Caitlin as she grows up. The staring will come with having a wheelchair too, but I'm used to that with her having a walker. I still get wound up, though I try to take it with a pinch of salt and it doesn't bother me as much...I don't mind at all if people look twice, it's only natural, but when people nearly break their necks staring and staring it gets on my nerves!
She's already been measured up for her wheelchair and soon it will be here, and I just have to hope people who didn't understand why she needed a wheelchair, understand now :)
So there you have it, I've explained the best that I can, it's not perfect but it will have to do :) :)
