It's only now that I am starting to even allow myself to consider that Caitlin may need a wheelchair when she gets older. I don't know if I was in denial, but I refused to think about it, convincing myself that she would be strong enough to walk. More and more, people are asking me, "But she will be able to walk eventually?" I always answer yes she will, but now I'm starting to think about what that means. We have been told she will be able to walk for sure. But that doesn't necessarily mean she's going to walk independently, with only her Afo's for support. I have kept telling myself her Afo's are all is that she is going to need, maybe it's my way of coping with it all. But recently, I'm starting to doubt that. Caitlin is 20months old in a few days and can't stand on her own. She walks with her walker, but her legs tire easily. We've had the walker a couple of months now, and she's doing great with it. She's learnt not to let go when she's finished with it (that resulted in a few nasty falls), she takes steps with it, and can walk with it for about 5- 10 minutes now, and stand holding it for much longer. But I can see how it takes it out of her, it tires her out. It's not fair that she has to put so much effort into walking - something most of us take for granted. I am starting to struggle to see how she can go from this to walking independently all the time, without needing crutches or a wheelchair. I know those with spina bifida say wheelchairs give them freedom, and independence. But I struggle with it. When I imagine Caitlin when she is older, I don't see the wheelchair. I don't know why, I just imagine her playing with her friends, being able to do all the things they can do. I just thought it would take more time for her to achieve those things. But I thought she would be able too eventually. Maybe I'm being unrealistic. Maybe it's starting work at the daycare centre thats got me thinking more and more about this. She'll be moving into the toddler room in four months and I don't know how she's going to cope with it, all the toys are on tables, and I don't know how long Caitlin will be able to stand at them to play. There's chairs, and Caitlin can sit on them, but the kids tear around from table to table playing, and I worry about how she'll feel if she can't keep up.
I think now, she's going to need to use a wheelchair for long distances at least. I don't think her legs are strong enough to cope with walking for long periods of time. It's a hard thought to bear. I'll probably come round to it as she gets older, but right now, it makes me very sad.
This waiting and seeing can be tough. I convinced myself that Caitlin would be walking just with her Afo's by the time she is 2, because the two children I know who have spina bifida at her level were walking independently by the age of 2. I know every child is different, but I had hoped and willed Caitlin to be in the group that wouldn't need crutches, or a wheelchair.
Having said that, Caitlin as always is the happiest and most content little girl. Our ASBAH ( Assosication for Spina Bifida and Hydrocephalus) advisor was out on Friday and couldn't get over how talkative she was, and said she would very much doubt she would need a special needs teaching assistant when she starts school. She thinks she will just need a general assistant just to cath her, until she learns to do it herself. She was also very impressed at Caitlin using her walker at such a young age. Maybe she will get there....but if she doesn't, as long as she's happy, I can cope with it.
Here are some pics of our trip to Tropical World at Letterkenny yesterday. We left our camera in the car, so had to use my phone to take pics. Here's her looking at the birds...
Fasincated by all the butterflies flying around her,
Laughing,
Showing off how good she's getting at standing,
Looking at the rabbits, (I love how she's getting those lovely curls)
Caitlin even loved the tarantula! I on the other hand, did not. At all. I stayed well away while her Daddy showed her it. She was excited to see what she calls the "spidey". I think Caitlin's gonna be a vet or do something that involves working with animals when she's older. She absolutely loves animals and is so good with them. She even tells people to be gentle when they're petting our dog lol. She's so much fun and she's my pride and joy.





Getting a wheelchair is a tough decision but it sounds like you have really given it some thought and want to make the right decision for Caitlin. My son Caleb got his chair when he was 2 1/2 and it was the best gift I could have given him. He is almost 6 now and walks well with AFO's and a walker but still needs the chair for longer distances. Caitlin is such a pretty girl :)
ReplyDeleteEvery day you get standing is great, but if she needs a wheelchair, that will be ok too. I know just how you feel, and it's sooooo hard!! She is such an amazing girl, that will never change :)
ReplyDeleteAine, I'm right there with you. It finally clued into me a couple of months ago that a wheelchair might not be years and years in our future, but maybe a couple of years when he outgrows our stroller.
ReplyDeleteDoesn't mean it won't be hard when the day comes (or maybe when the day comes it will finally not be hard?) It’s hard when we see how good they are doing right now and wondering and worrying how they will be in the future.
Caitlin is ADORABLE and doing so well, and there is lots of time still until she is 2!
Amanda (Nick's mom)
Oh she is just soooo adorable! Like a little disney princess who can talk to animals or something. :) Cute as a bunny! I agree with the others that while these decisions are so hard - and it's normal to feel scared/sad/denial/conflicted - in the end, whatever Caitlin uses to help her get around won't matter one bit. She will play and laugh and charm the world just as beautifully in afo's, a wheelchair, crutches, whatever! And every mom I've known feels that lump in their throat over getting new equipment - especially the wheelchair - but once they see their little rockstar happy and independent - all their fears and concerns fly away. :) Sending you hugs from afar! (And Caitlin is successfully added to the SB Buddies page on my blog. Didn't know she wasn't on there!?! Thanks for reminding me!)
ReplyDeleteThat girl is such a gem!! Totally a little Snow White with her gathering of animals ;)
ReplyDeleteContemplating new equipment is hard. It's a big, bitter pill. I don't know much about it, but I'd say Caitlin has sooo much time to get stronger and walk. Wheels made me shake and want to throw up for a long, long time. The idea would just make my throat close up. BUT today Kingsley sat in a real wheelchair for the first time and moved and I had no tears, no panic, no nothing, just smiles and cheers for him. Where ever Caitlin ends up and with whatever help she needs to get there, it'll happen in baby steps. You'll adjust and she'll let you know just how awesome it is. For now, she's doing awesome. She's standing so strong!