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Posted Jan 8, 2015 by Jacquie Robison
About a week after we first learned of Sofia’s diagnosis, I received a call from her pediatrician. She had been advised of the test outcome by the hospital and had called to schedule a follow-up visit. I was grateful for the outreach and went to the appointment with my daughter, ready to hear more about CP. Instead, the pediatrician said “I’m not expert in this condition, and the resources you’ve been given can better answer any specific questions you and your family have. But, I wanted to make sure you hear someone tell you that you should not ignore her mind because you’re focused on her legs. Treat her whole self.”

I was a little stunned. I had spent the past seven days educating myself about CP — drinking from a firehose of therapies, expectations, limitations and possibilities. I was crafting a schedule of things we NEEDED to be doing NOW in order to get her legs moving. I wanted to know how much we could do EVERY DAY to help her improve. I was worried about FAILING my daughter. Failing my family.

The pediatrician went on to say how bright she had always found our daughter to be. We talked about how Sofia was saying words at eight months and that by eleven months she was correctly identifying objects. I felt myself lifted up. We had always known that the muscle of her mind was as important to exercise as any other one in her body. Before we knew she had cerebral palsy, we would chat and giggle together. My husband and I would encourage her to pull herself to stand and cajole her into turning over. In those first few days after the diagnosis, we wondered aloud “how could we not have seen it?” That’s one of the frustrating things about this condition. You don’t hope for a more severe case, which typically results in an earlier diagnosis, but you also feel hugely blindsided by what feels like an after-the-play call.

CP didn’t change what an amazing girl we knew her to be. And here, her doctor was telling us that it absolutely MUST NOT change it.

My step was lighter when I left the appointment.  What the conversation really did was give me permission to not think about cerebral palsy ALL THE TIME. It was license to spend days reading, drawing or printing. I realized that every moment didn’t have to be spent worrying whether I was doing enough stretching with her. That I shouldn’t constantly be troubling about a new gross motor activity to push her development. As she experienced success in areas where she was very capable, I saw her confidence grow across every dimension. I learned to relax and let that happen.

I take delight in watching her excel in her exercises that address delays due to the CP, but also when she flourishes with something that isn’t related to those challenges as all. And, isn’t that what each of us wants for our children? For ourselves? To have the whole self seen.
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