I lied about my son today.
We took the Taters cross-country to see Latke’s parents this week. We had a great time, the kids got spoiled, all was well.
On our return flight, I sat by myself with LP, while Latke had the girls across the aisle.
As I sat down, the man by the window smiled and reached out for LP’s hand. I have to admit every time a stranger takes an interest in LP I still have a moment of trepidation. I don’t blurt anything out anymore, but I still hold my breath for a second, waiting for that whiff of scrutiny. Read the rest of this entry »
If you are reading this now you have a) stumbled onto this corner of the interwebs on your own or b) are a friend or family member of ours. Either way, welcome.
A few weeks ago, we started to suspect that the Little Pirate might have Down Syndrome. If you are at all familiar with Down Syndrome, this will surprise you, because most parents find out about the possibility of their child having Down Syndrome while still pregnant, but at the latest soon after their baby is born. Why didn’t we know earlier? Well, for one, we homebirthed. For most, that means no prenatal testing, and often, no ultrasounds at all. Also, we (so far) have a baby who happens to have Down Syndrome, but none of the many serious health conditions that often come with the diagnosis. For example, had LP been born with a congenital heart defect (happens to 40%-60% of babies with Down Syndrome), the question would have been immediately raised when we brought him to the hospital.
So when the Little Pirate came along, there was no cause for suspicion. As you can imagine, the work of having a newborn is pretty consuming. We were busy with dealing with Mouse and Chipmunk. LP slept a lot. I was recovering. My boobs hurt. And let’s be honest. When most people have a baby, unless they did the prenatal screenings, they’re not wondering if their baby has Down Syndrome. You just don’t think it would happen to you. In hindsight, there were signs. But at the time, we knew so little about it and were so consumed with the enormity of having a third child that the little Down Syndrome label just fluttered by in the wind, unnoticed.
I hope this blog will be a place for me to write about our family’s experience. So far it has been hard, amazing, and intense. I also hope that I can point readers to other blogs that helped me, as well as links to information about things important to our family. We are at the beginning of figuring out what LP’s Down Syndrome might mean for us. Right now, I think out will entail a ton of frustrating medical appointments, navigating a strange and unfortunately politically influenced social services system, and finding a new path as a family. Join us for the ride, the more the merrier.