I was sitting in therapy yesterday watching my little girl and wondering what her life would have been like if she were not born today and not born in the area where we live. Would she be walking at all, albeit with her walker? Would she be in a regular kindergarten class and having play dates with her friends?
Would she have a walker, and $3000 braces on her legs and night splints and therapists?
It would be so interesting to look at how her life would be, how my life would be?
I wonder if she would have been more sidelined, and if I, as her parent, would have just gone with the flow. Would I have said "ok, you have a disability and your life will not be as big as it is now?"
Or would I have fought the tide of people saying she could not do things or was not capable. I like to think I was that strong, but maybe I wouldn't have been. Those people and parents that did stand up and say "no" really had to have been amazing. They were on a trip up stream and had no idea what the future holds.
But then again, maybe I am doing that, and I am being weak for her right now. Maybe there are cutting edge treatments and therapies I haven't thought to find and maybe she could be doing even better. Maybe I am going with the flow and doing what everyone else does.
Am I really looking far enough outside the box for her, and do I have one more ounce of time or energy to do that while I am raising my family. I don't really know.
Oh crap, more to feel guilty about!
Friday, March 25, 2011
Thursday, March 24, 2011
Bearing Witness to the Hard Days
Somehow even after being in this game with my little girl for 6 years, it never gets easier. I don't mean it never gets any easier, it has its days. Marginally it has its ebbs and flows. Some days I have tons of hope and feel like all is right with the world, and then there are days like today.
My daughter just got through with 5 weeks of serial casting. She had new casts applied each week for 5 weeks, constantly tweaking and moving her foot to increase her range. It was amazing. She could actually get her heels down when she walked as soon as they were off. And it was fairly quick, and she did handle it with strength and never complained. I did. She was heavy and not super mobile. But she was a trooper.
Then the next week we started Adlei Therapy. It is an intensive suit made from the cosmonauts that has a series of pulleys on it. She wears it for an hour and a half and does some really hard therapy during her time. I watched yesterday and today as her little face just looked completely taxed and exhausted. It was tricky for her and her little legs with all those wires looked so small and so tired. I watch. I bear witness. I cheer her on. But days like today just beat me down. I don't want to watch my child suffer. I don't want to be the Mom and have to cheer her on when I want to cry and sweep her up and run. By ten am I could have collapsed I was so exhausted, and it was solely emotional.
I wish I was stronger, and more like my daughter on days like this.
But here's to faking it in the face of our children!
Patty
My daughter just got through with 5 weeks of serial casting. She had new casts applied each week for 5 weeks, constantly tweaking and moving her foot to increase her range. It was amazing. She could actually get her heels down when she walked as soon as they were off. And it was fairly quick, and she did handle it with strength and never complained. I did. She was heavy and not super mobile. But she was a trooper.
Then the next week we started Adlei Therapy. It is an intensive suit made from the cosmonauts that has a series of pulleys on it. She wears it for an hour and a half and does some really hard therapy during her time. I watched yesterday and today as her little face just looked completely taxed and exhausted. It was tricky for her and her little legs with all those wires looked so small and so tired. I watch. I bear witness. I cheer her on. But days like today just beat me down. I don't want to watch my child suffer. I don't want to be the Mom and have to cheer her on when I want to cry and sweep her up and run. By ten am I could have collapsed I was so exhausted, and it was solely emotional.
I wish I was stronger, and more like my daughter on days like this.
But here's to faking it in the face of our children!
Patty
Tuesday, March 1, 2011
The Uselessness of Guilt and Why I Still Have It
When you think about useless emotions, guilt and jealousy are my top two.
I'm pretty good on the jealousy front, but guilt still knocks me out time and again.
Last Sunday my son had a hockey game bright and early on Sunday morning. My daughter wanted to come and I really did not want to have to carry her into the ice rink and get her walker and carry all of her things-and so I told her it was not going to be fin and none of her friends were going to be there. A white lie, and I knew it. So on arrival, when everyone of her friends and cousins were there and they were all running around having fun, I spent the game feeling like the world's worst Mom, once again.
My daughter is going through serial casting, which means some heavy bilateral casts from the knew down. She is not super mobile as it is, and this just makes getting her out in the snow and muck that much harder.
My friends told me that I was being silly, and that kids can't go everywhere. But I think I pride myself in making sure she never gets left behind because of her disability. And that she can do whatever she sets her mind to. But then I get tired by Sunday morning of the lifting and caring, and I want o drink my coffee and watch my son and be alone a bit.
So I guess this is an area I have to work on? What does everyone else do with their guilt and their special needs child?
I'm pretty good on the jealousy front, but guilt still knocks me out time and again.
Last Sunday my son had a hockey game bright and early on Sunday morning. My daughter wanted to come and I really did not want to have to carry her into the ice rink and get her walker and carry all of her things-and so I told her it was not going to be fin and none of her friends were going to be there. A white lie, and I knew it. So on arrival, when everyone of her friends and cousins were there and they were all running around having fun, I spent the game feeling like the world's worst Mom, once again.
My daughter is going through serial casting, which means some heavy bilateral casts from the knew down. She is not super mobile as it is, and this just makes getting her out in the snow and muck that much harder.
My friends told me that I was being silly, and that kids can't go everywhere. But I think I pride myself in making sure she never gets left behind because of her disability. And that she can do whatever she sets her mind to. But then I get tired by Sunday morning of the lifting and caring, and I want o drink my coffee and watch my son and be alone a bit.
So I guess this is an area I have to work on? What does everyone else do with their guilt and their special needs child?
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