Sara's arthrogryposis

I really should create a blog dedicated to Sara. I have so many thoughts and feeling that may help others cope who are struggling with the same thing. I'll post here for now until I create a website for her. Today was another tough day in therapy. Part of therapy includes feeding. Her OT fed her most of the time, trying to get her to use her bicep muscle, except we're not sure that she even has one. So, I had to watch her struggle to get food to her mouth while the OT held her arm. All Sara wanted was the spoonful of food. All the OT wanted was to see what (if any) muscles she would use to try to get the spoon closer to her mouth. All I wanted was for it to all go away. Although it's been close to a year, my life still feels surreal, and I have to question whether this is really my life, that I'm really taking my daughter to OT because she can't use her arms. I wonder when it will all sink in.

The OT asked what my priorities were with regards to her function-was it to eat independently or to use her hands. I told her that it was to use her hands. She implied that she could start to teach Sara to eat with her toes-I'm so not ready for that. Though she seems to have plateaued with her arms for now, I won't give up on her using her arms, not now, not ever. She learned to grasp cereal in her hands recently. She's also learning to use her tray for elbow leverage. Though we have a good OT, sometimes therapy can be discouraging. I feel like I'm constantly reminded of what she can't do. The OT pushes her to use her arms and hands, which is obviously her job, but it's so hard to watch Sara struggle and get frustrated.

Ironically, I'm listening to the radio and the lyrics to the song are, "Jesus, take the wheel, take if from my hands; I can't do this on my own..." (Carrie Underwood)

Thank you Lord for the reminder to trust in You. Please give me strength. I can't do this on my own.