First, World Down Syndrome Day is coming up on Monday, 3/21. Get it? 3/21. That is, 3 copies of the 21st chromosome, which is what results in Down Syndrome, or Trisomy 21. Ya. Probably only parents who have children with Down Syndrome get that one. But it's clever, I think. And, we love to celebrate Down Syndrome around here, so why not one more day of awareness.
|5 day old Charlie.|
Second, March is the month in which received the news that Charlie has Down Syndrome. Yep, 5 years ago this month. March 28, 2006, to be exact.
I'll be honest, that month was a painful time for us. Charlie was 2 months old. We were dealing with the fact that he was hearing impaired, and were having our first meetings with an infant teacher for the deaf and other early intervention services for children with special needs.
|Not yet 2 months old. Not yet aware of his possible diagnosis.|
I was at Charlie's 2 month appointment when his pediatrician began asking some questions that seemed to come out of left field to me. A line of questioning that ended in the gentle suggestion that Charlie may have Down Syndrome, and genetic testing should be in order.
Our lives changed forever that day. A new world of awareness aroused in our hearts.
It took three weeks before the results of the genetic test, called a karyotype, were ready. It was those three weeks while we waited that were so painful to us as we cared for our baby day after day, wondering if he was who we thought he was.
|"Does he, or doesn't he?"|
In those weeks I scoured the Internet for information on Down Syndrome, for lists of the signs. I was particularly drawn to the pictures of babies with Down Syndrome. I studied them closely to compare each feature with my baby. Could he have it? Could my baby have Down Syndrome?
Of course, we all know what happened. Charlie has Down Syndrome. And honestly, once we knew, we set the pain aside as best we could, and moved on in love for our boy. There was adjustment, and moments of anxiety, and wondering what the future would be, but not the pain of the wondering.
So, in honor of the month of March, our family's own personal Down Syndrome Awareness Month, and also in honor of 3/21 World Down Syndrome Awareness Day, I will post a series about what life is like with a baby with Down Syndrome. And I promise to post LOTS of pictures of our sweet little guy along the way.