Happy World Down Syndrome Day (a day late)! We are celebrating by participating in the “A Day in the Life with Down syndrome” project. This project is collecting stories from people with DS about what a day in their life looks like. Owen can’t really speak for himself so I will show what our Saturday looked like last week with pictures and what I imagined Owen might have said:
And that was that. Pretty average, uneventful day. The bigger picture for this project is to be a resource for parents with a new diagnosis — a window into what life might be like. When we first found out Owen had DS, I spent hours scouring the web for blog posts that would show me what my life would be like. To have these stories collected in one spot would have been awesome! This shows what one day looks like for us. A pregnant, cynical, and uninformed Danielle would have read this and wondered “Yeah, but this looks like an easy. What about the other days? The hard ones.” I would say to her that this is a typical day. Most weekends look like some version of this. But just to humor her, here is a broader overview of our day-to-day lives and how much DS factors in, which is most of the time, not very much.
Owen is 18 months old. John and I both work full-time outside of the home and Owen goes to a great daycare during the weekdays. He is in a class with other typical kids. He is a little bit behind his peers developmentally. Many of them are walking and he still working on mastering crawling. This is not as big a deal as I thought it would be. He learns a lot by watching them. And they learn from him too. His teachers have starting signing with Owen and now the whole class signs. Despite being a little behind them, he holds his own. I was worried about him getting run over by bigger, stronger kids and that’s not really been the case. He doesn’t let anyone take a toy from him and he has no qualms about getting in the mix with the other kids. He participates in all the same activities as the rest of his class. He gets along with everyone, but his best buddy is Cash. Cash usually comes crawling over as soon as he sees Owen in the morning.
Owen has three therapists: a physical therapist, a speech therapist, and a developmental interventionist. They go to wherever he is. We try to keep a mix of daycare visits and home visits. He usually has 1 or 2 therapy sessions a week that run for an hour each. Therapy does not run our lives, another thing I had been worried about. We have a good balance of family time, and just John and I time. Last weekend we went to a Prince concert. John is going to the Final Four in a few weeks (go big blue!). I visited my friends from college for the weekend a few months ago. When we think about planning a vacation, Down syndrome does not factor into our plans. I can’t really think of a time when Down syndrome prevented us from doing something.
As for hard days, we logged quite a few sick days this winter. Owen had RSV last year which causes recurrent wheezing for up to two years. We had two short hospitalizations for pneumonia, and several other times when we thought about heading to the ER. These were our “hard days.” I don’t know that I can give Down syndrome credit for them though. Most of the parents I have bonded with over respiratory issues following RSV do not have children with DS. I thought a weakened immune system might be contributing, which is sometimes the case with DS, but the doctor ran labs when we were in the hospital last and his immunoglobulin levels were normal. Low muscle tone could affect how productive his coughing is, and that might be one way that DS has adversely affected his health, but had he been born without DS, I don’t know that we would have avoided these issues. We all need help with these bodies at one point or another. I know families who have had harder and easier medical journeys than ours, both with children who have DS and those that don’t. We have had 551 days with Owen. 5 of them were spent in the hospital. We received great care and were sent on our way. When I think about the time we’ve had with Owen so far, I usually think about those 551 days first.
If my pregnant, scared self were sitting in front of me know, this is what I’d tell her:
Most of the things I worried about are not as big a deal as I thought they would be. Take it one day at a time. Owen is a happy kid. We are happy to be his parents. You are not having a diagnosis, you are having a baby. There are a great many things that make Owen who he is. Down syndrome is just one of those things, so read as many blogs as you’d like to try to prepare for what life with DS might look like, but remember you are reading about other people’s lives. Owen’s journey will be unique. And this is not just a life you can handle, it’s a life you want. It’s a really great one. Get excited.
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