Once a year, Penny and I travel to see a specialist and his team at the Down syndrome clinic at Massachusetts General Hospital. Every year, I wonder whether it will be worth it. It takes a lot of time. I have to gather all the reports from the previous year. And Penny is usually doing pretty well, so I feel like nothing is urgent about her care and maybe we should just wait until something big comes up.
This year, I started filling out the (long) intake form for Penny’s visit. As much as I bemoan the time it takes, the form itself reminded me of why we go back again and again.
They’ve added a portion for Penny to fill out. It asks questions like whether she knows how to call her doctor, whether she knows where her insurance card is, whether she cares about exercise, whether she knows how to maintain healthy boundaries in relationships. It’s a form that assumes Penny has her own needs, her own desires, her own goals, and her own ability to learn. It’s also a form that showed us some areas where she can continue to grow in independence.
We head up for our visit this month, and it has already been worth it.
More with Amy Julia:
Using Our Spiritual Imaginations to Envision a Good and Possible Future
Christianity Today: God Teaches Me Through My Daughter with Down Syndrome
Stepping Off the Ladder of Comparison
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