Most of the time - 90% - I'm OK (or better than OK) with Ben's diagnoses. But there are definitely some times, usually the week before a cardiology appointment or check up with the pediatrician, when I feel tense and worried. When I'm in that kind of heightened emotional state, I'm way more sensitive to comments about Ben or situations involving Down syndrome.
Last week, there were several moments that struck me. None of them were awful, but they still stung. A little girl came up to us at the park and gazed at Ben for a moment. "Your baby is cute," she said. "Thanks!" said I. She took a few more seconds to look at Ben, then cocked her head and said, "His eyes look funny." Then she ran off to play.
I don't have a problem with a child who innocently makes an observation. And I didn't see the need to explain to this little girl anything about Down syndrome. I just said, "Oh, OK," and off she went. No big deal. But ... I'm so used to seeing Ben, that I don't notice that he looks different. It surprised me to realize that something about him looks different enough that a 5 year old would see it. And that realization nicked me a little bit.
Another morning, I saw a large group of adults from a local adult day care center hanging out at one of our favorite parks. Many of the adults had Down syndrome. Part of me enjoyed seeing people hanging out - listening to ipads or talking with friends. Another part of me wondered what Ben's life will look like in 30 years. Will he be hanging out at the park on Wednesday mornings? And it scraped my heart.
At the pediatrician's office, I had to fill out a 9 months developmental assessment for Ben. I marked "not yet" for most of the activities. Then, the pediatrician had a physician's assistant shadowing her for the day. Our doctor and the P.A. were both very professional and welcoming. Then the doctor commented, "Let's talk about hypotonia (low muscle tone). This baby should be a good example. How do his muscles feel?" The answer, "Soft." Ouch. I know it's true, but it pricks.
I have a friend who occasionally uses the word "retarded" in conversation. I didn't know that anyone still used that word. She doesn't mean it about Ben or about anyone with disabilities - and I haven't asked her to stop saying it. But I hear her, and think of him ... and it stings.
Ben at 9 months.
I have been writing this month for Down syndrome awareness. I want everyone to know that Ben delights my heart. He is a treasure and a joy, but parenting a child with Down syndrome is not always something that I celebrate. Sometimes it is painful.
I wrote this post when Ben was 9 months old. I wasn't ready to post it then, but if I'm honestly reflecting on the last year, then it's important to remember this. Nine months was a hard milestone for me. Not because of anything major, but because of little nicks and dings. I'm glad to not be in that place right now.