Today I drove an hour to the children's hospital for a spasticity clinic follow up. Sadie's progressive weakness is apparently stumping everyone. The weakness in her leg is explained by her surgery, the weakness in the rest of her body is explained by a shrug and an "I don't know what to tell you" look. Everyone just keeps saying "Its something more then CP but we can't figure it out." Sadie's spasticity doctor sat and talked with me for just over an hour today. She said that I soon have to realize that "it is what it is even though I don't want to hear that" She explained that we should support and let Sadie develop with what mobility she has. (I think this was after I suggested robot legs).
I drove home thinking about this. A lot. I then had to drive a half an hour in the other direction for Occupational therapy. I didn't really feel up to sharing my doctors experience like I usually do with the OT in fear I would start blubbering. We started talking about Sadies dressing goals and how she still can't pull up her pants all the way. Her OT suggested a technique that one of her other kiddos uses. He lays on his stomach so he can bridge his body and get his pants up. Great, I thought, Sadie has to wiggle like a worm on the ground to get her pants on. I think the therapist saw my face and she gently reminded me of all the reasons Sadie needed to be dressing herself: independence, developmental stage, self esteem, blah, blah , blah. Any who when it was PJ time tonight I had Sadie put on her own shirt as usual then I started to put on her pants. She said "I want to try what Shawna was talking about". "You mean putting on your pants?" She nodded. While she was sitting I had her pull them up half way then I helped her get on her tummy. Sadie wiggled around and got her pants up the rest of the way. That little worm sat up with the biggest grin and threw her arms around me so very pleased with herself.
A mother who I befriended has a son with Cerebral palsy on top of a dozen other conditions and syndromes. Her son seems hardly there. He can't move and has everything done for him. He makes noises by which she can tell if he's happy or unhappy. She has told me that has no further expectations for her son, he won't progress any more. She expressed that I had a much harder responsibility because Sadie had come so far and has potential to go further. I was baffled at this comment of coarse seeing how much work she puts into her sons care. In her situation I could understand her acceptance.
I see parents with older kids going through similar situations. I know they have been going through it much longer then I have, but that "It is what it is" mentality that some parents have always really bugged me. I felt like it was a surrender and how dare you give up. Yes I am still learning. I'm learning that those parents haven't given up. I shouldn't ever assume that. I will always be fighting but maybe I will get there, to the land of "it is what is". I'm learning that it's not a place of surrender it's just a place to focus on what you have and what you can do with it.