Claire – An Inspiration!

I have the pleasure, honor, and responsibility of chauffeuring my stepgranddaughter, Claire, to her eyesight therapy. Once or twice a week I take her to ChildeServe. I have to get up and ready much earlier than normally I would. She is always ready. Her walker waiting outside. Her backpack on as she comes out the door.

We take about 20 minutes to get there. It’s been cold and windy, but no bad weather so far. We are both still waking up as we make the trek across town. Some conversation, but mostly it’s me sipping coffee and she telling me what’s up for the day.

Wednesday she shared that the family is going to Florida in March. She and her siblings just found out about it this past week. We talk about what we’ve been eating, what’s up for the weekend. Ben and Emily took their permit driver’s tests on Saturday. It’s a big deal.

Claire is eleven. She has Cerebral Palsy (CP). She has trouble walking. She wears braces. She uses a walker, though not around the house. Claire has survived several surgeries attempting to correct the combination of variations in growth of bone, muscle, and tendon. She works hard to take care of herself and contribute to the shared needs of her family of seven. I have had the privilege of being a part of her extended family for several years. I have watched her grow.

The first time I was at their house, Claire came bounding down the stairs head first. She moved in a controlled, bumpy slide. A huge grin on her face. I’ve rarely seen her without that grin since. But now she walks, with effort, up and down those same stairs.

I have other relatives with disabilities. I’ve seen the challenges families have caring for a child with mental or physical limitations. So I was not taken aback by Claire’s condition. But I’m sure that others’ reactions and responses are different. I know that Claire is painfully aware of how others look at her.

I sit in the waiting room at ChildServe. I am stunned at the number and myriad challenges of the young people and their parents. They come for different, often multiple, kinds of therapy. Claire also receives physical and occupational therapy on a weekly basis. She has most of her life.

(I should probably explain something here. Claire’s eye work. Her eyesight is okay. She has a visual processing disorder. Her brain decides to offer a narrow window of vision. It, for instance, limits her peripheral vision. Unfortunately, the brain decides when and where to concentrate that narrow window. Thus, she is working with a therapist to retrain the brain to increase that window and help her control it. Claire is also challenged with fine motor skill difficulties. Further complicating how she learns in school. Tough stuff!)

Claire is not afraid to stand up for herself. I don’t think she’s always been that way. Wednesday she took her school work to share with her sight therapist. She wants to show her therapist what she is doing in a specific class. She also wants to share the challenges she has with a teacher. This teacher seems not to know how to accommodate her. Unlike a physical disability, a processing disorder is not noticeable to others.

Claire expressed anxiety as we rode from ChildServe to her school. She planned to confront her teacher, armed with the guidance given by her therapist. Claire had written an email to her teacher and received a reply. She recognized that her teacher had good intentions. But she also feels that her teacher’s solutions are not responsive to her needs. Suggestions to use a typing device to take notes or speech-to-text options are not effective. Claire still can’t keep up.

I don’t know yet how that conversation turned out. I’ll try to follow up in a future post.

Which brings me around to the inspiration. As I said, Claire has grown. Physically, sure. But also in maturity. Most notable in our car ride conversations is her vocabulary. And she uses it well. Claire is articulate and expressive. She knows what she wants to say and explains herself well. Sometimes it takes time to process how to respond to a question. I love that she does. She thinks before she speaks. Something we should all aspire to.

Anyone who spends time with Claire surely can see past the physical appearance brought on by her CP. It is still a tragedy to judge a book by its cover. Claire’s looks are maturing. Her radiantly smiling face is transitioning from that of a child to one of a young woman. She carries herself, both physically and mentally, with dignity and confidence. She is not afraid of who she is. She embraces her qualities. She wants, needs, and looks for acceptance by others. Not so different from everyone else.

I am so impressed with Claire. I am a better person for knowing her and sharing her life – with all of her struggles. I hope by writing this message that I can expand people’s understanding of living with disability. People’s acceptance of everyone for who they are. Whether their challenges are physical, cognitive, or emotional. Claire reminds me again that we all are human. We all have worth. We all deserve respect and understanding. I hope you understand me. I hope you join in recognition and acceptance.

Claire, atop Rendezvous Mountain, 2023