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?
Sunday, February 27, 2011
New Years Day 2011
New Years Day 2011
Ok, the New Year has officially started, and I have a long list of goals swimming around in my head. Most are writing based, and career and personal goals, and lots are financial. Those I am determined to accomplish in the first few focused weeks of this year.
But there are family based ones, as well, and those seem to be based mostly on guilt. I hate guilt.
Not that anyone actually “likes” guilt, or thrives on it, I’m sure. But it overwhelms me when I let myself think about my kids. And what a useless and draining emotion it is. It truly adds nothing to my life, nothing useful to my children’s lives, yet there it is. With me when I close my eyes at night, with me when I’m in the shower, with me when I sit at my desk and write. Shooing them away so I can concentrate for 15 minutes, and listening to their pleas for attention in the background.
Being the parent to a child with a physical disability seems to only add to my guilt. Am I doing enough for her, and I facilitating enough for her, making sure she participates in everything her brother and sister are doing? And am I doing enough for them?
The answer is always a resounding “NO.” Although everyone around me is always marveling at what I get my little girl involved in, and how many fun things she gets to do. I always think that they just don’t see the day to day, the times when she is not doing everything every other kid is. She plays so well sometimes quietly, that I let myself enjoy the peace. The not carrying her or helping her walk or dance. But then I see it in her eyes, watching her brother and sister flipping around jumping on a bed or dancing crazy to their new music, and she wants me to help her. But there is laundry and dishes, and everything in the way.
Oh well, maybe that is the resolution of the hour. Not feeling guilt, and giving each of them a little bit of time. A little attention to what they want to do, be it the computer game, the dancing, the reading, and then move on. The laundry should not ever cause guilt, it is not a growing, developing mind or self-esteem of a child. Let it wait, I will tell myself. If you only have so much focus, use it for what is truly important. Forming a life, growing a child.
Ok, here is to 2011 and a new focus. Short, sweet and centered.
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