The Girl Who Told Me With Her Eyes That She Understood

A big reason I write this column is because we are now the family I desperately wanted to see when I researched Rett syndrome 11 years ago. I wanted to see a family making it work, and who gave me hope that raising a Rett child was possible.

It is an honor and a pleasure for me to speak to families, classes, and schools now. I feel like I’m paying it forward to all those who helped me along this journey. And if I can show a little selfishness, it’s also my therapy.

Recently, the local school district asked me to speak with a newly diagnosed Rett syndrome family that didn’t speak English. I was honored, and it was the first time I’d been asked to meet with nonnative speakers. Early Intervention Services provided us with a translator.

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On the day of the visit, the mom opened the door with a smile. I smiled back and said, “I give hugs. Is that OK?” She nodded and I gave her a long — probably too long — awkward hug.

The past comes back

When I saw all of the equipment in her house, I felt connected to her. This was me 11 years ago, I thought. I saw her child on a therapy mat. She was a little peanut, with chubby cheeks, a huge smile, and an incredible ability to maintain eye contact. This little girl, who was almost 3, had the same low tone and the same disposition I’d seen in my daughter, Cammy.

I sat on the floor next to her and she smiled, giggled, and kicked her legs as I spoke to her. I asked her, “Do you know how I know you know that I have a good heart?” Her eyebrows raised and she looked at me as I said, “Because you know that I know you understand me, and you are extremely smart, and I have an angel just like you.” Her legs kicked again.

Communicating with Rett children

I told her mom that when she kicks her legs she is saying yes, or is excited. Throughout the visit, the little girl looked intently at me. It reminded me how Cammy had looked at her teachers, therapists, and Rett doctors when it became clear that they knew she understood them.

This was what the mother seemed most concerned about in regards to her daughter starting school — that no one would know how to communicate with her daughter or be able to read her. I assured her that she was ahead of the game and on top of things. She already had so much equipment, and I told her that Cammy had done well in the school she was sending her daughter to. She would have the same teacher and the same therapists as Cammy.

Before I left, I told her all of the things I wish someone had told me 11 years ago. Your daughter is in there — she understands everything you say. You did nothing wrong. We won a terrible lottery. There is hope. There are clinical trials going on now. Prioritize your therapies, but it’s OK to miss one, she’ll be all right. Teach everyone you know how to communicate and interact with her. When people ask how they can help, tell them, and be very specific. Although she has Rett syndrome, she’s still a typical child in so many ways. You got out of bed today. Celebrate that.

And I added this: It won’t always hurt so much.

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