10-08-2010, 06:24 PM
Join Date: Aug 2008
Location: Melbourne, Vic, Australia
Re: Baby with cp: Encouragement needed
Hi there, you know I think every mother on earth that has found their child has some disorder or another knows exactly how you're feeling right now. We feel so overwhelmed, we drive ourselves crazy trying to think what the future holds and we have that 'why them/me' frame of mind.
For me the best thing that happened in the beginning was my husband telling me, 'it's a life sentence, not a death sentence' and also reading the short story 'Welcome to Holland' (I highly recommend you read that you can find it online easilly, just type it into the search engine).
My little girl is 4 and a half now and I have come so far since getting her diagnosis (spastic quadraplegia CP), I really have grown as a person, I have a new found understanding of kids with disabilities and their parents. I have met the most amazing people, I have cried (both with sadness and with pride) and I have laughed (daily). I have learnt to appreciate each and every little accomplishment my daughter makes, things that most people take for granted. I know I did with my first 4 children.
My daughter is perfect with her congnition, her speech is also very good and she has the most wicked sense of humour. She has a GMFCS level of 4 (second highest) which means she'll probably never walk independently. But you know she's gone from not being able to crawl to bunny hopping around the house, from not being able to hold her own weight standing to pushing a standing ladder around for short distances (this is the most recent accomplishment), she has a Hart Walker which she couldn't move in to now attempting her own form of running and now we are about to trial another walker (Rifton Pacer) which will be much easier it get her in and out of.
She is like any other little girl, she'll talk our ears off, she loves Dora, she loves to draw and play with playdough, she like to dress up and have her hair looking nice and she loves to play dolly's and tea parties.
I feel blessed to have been given Aleacia, I have such a new look on life. Yes I still get sad, but I know if I just take one day at a time it makes it so much easier to deal with. And as one of my OT's told me, don't treat her like she's different, she doesn't know she's disabled, she's never walked/crawled so she doesn't know what she's missing. Now she older and is about to start kinder I do tell her (and the other kids that are curious) Leacie's muscles don't work properly that's why she needs a wheelchair to get around. Kids are so accepting when they're young.
As for medical procedures, she's had two MRI's under a general anaesthetic and while she was under they also did numerous blood tests and lumbar punctures. She has had 2 lots of botox in her hands/thumbs and legs. She has had an adductor release to stop her scizzoring (the tendons in her groin that pull her legs together). She may face a hip osteotomy when she's older, but we'll cross that bridge when we come to it.
I hope you get all the support you need and all the therapy that can help. I know in Australia we have a pretty good early intervention system.
Any time you need to vent or share your ups and down we're here to be a shoulder.