Friday, March 18, 2011

Having a Baby with Down Syndrome: What it's Like.

March is a "Downsy" kind of month around here.

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.

I must have read about 6 books on Down Syndrome that first month after his official diagnosis. Here I have him playing with rolled towels under him to support his arms and help him bring his hands to mid-line. I become not only his mom and biggest advocate, but his round the clock developmental therapist.

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.

More here.

4 comments:

Dave Davison said...

Kim,
Thank you so much for sharing. That picture of you holding baby Charlie is so beautiful. I learn so much from you and your blog.

Cindy said...

I don't know all the circumstances around Charlie's birth, but it surprised me to read he was two months old before they diagnosed him with Down Syndrome.

It is a moment for all of us that changes us forever. Brings fear, doubt, uncertainty. I look forward to reading your 'series'!

Anonymous said...

Kim, I began reading your blog over a year ago. My daughter & husband have adopted 2 children with Down syndrome. One is 5 tomorrow and the other is 16 months. I live near Sacramento, and we have been having strong storms. I know you live on the far Northern coast of California... I've been wondering how you are faring with the tsunami, rain, wind, etc. I pray all is OK.
Grandma Alice

Kim said...

Grandma Alice, Thank you for checking on us. I have heard a lot of the strong weather, but have to say here in Arcata we have been wet, wet, wet, but no strong winds thankfully, and nothing is flooded much. It has been quite cold, and it is supposed to rain for several more days. We are all cozy inside. Spring weather will be much welcomed!

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