Beautifully written and a must read not only for parents but for each of us
I want to talk about something uncomfortable. It’s come to my attention that many of the best among you are making a big mistake. I understand. I was too, two years ago.
My daughter has a rare genetic syndrome called Apert syndrome. When she was a baby, the plates in her skull fused together. That meant there was no room for her brain to grow, and she needed surgery right away to relieve pressure. Her head is larger than average. When she was born, her fingers and toes were fused together. She’s had the first surgery to separate her fingers, so now her thumb and pinkie are released. She has a tracheotomy, so she cannot talk yet. Because of various complications, she’s spent a significant portion of her young life in the hospital. She’s developing muscles she needs to sit up on her own and to…
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