Down Syndrome is forever going to be part of our story. That reality is finally setting in for me. It's been 7 months since the geneticist came into our hospital room to explain Trisomy 21 to us and confirm Samuel's diagnosis. She handed us the paper that Samuel's chromosomes were lined out on with neatly matching pairs. Neatly matching up 1 by 1 until you got to the 21st set. And there sat an extra squiggly line along side that matched set. Out of place. Forever linked.
I'm slowly learning about Down Syndrome. The first 4 months of Samuel's life were completely dominated by his heart defect. A heart defect that is routinely seen in babies with Down Syndrome. The dual diagnosis of genetic defect and heart defect was a tough pill to choke down. Samuel's heart defect was, without a doubt, life threatening. If left untreated, he wouldn't have lived past his 2nd birthday. So, understandably, when faced with these two new things to learn about, pediatric cardiology took top billing.
Now that we are on the other side of the ICU from his AVSD/PDA repair and his pacemaker installation, I am making my way through the first stages of understanding just what that extra chromosome is going to mean for Samuel's life.
Some days that means I learn a lot about infant physical therapy. Other days it means I read the hopeful stories of other families who have been where I am going. And to be honest, some days it means I sob angry, messy tears after the rest of my family is in bed and I stumble across really sad things like a life expectancy that means I will probably have to say goodbye to him a lot earlier than should ever be asked of a parent.
This journey is not an easy one.
But what I am finding out is that it is not a journey my family is going to have to go alone. That same day our geneticist handed us Samuel's diagnosis, she also handed us a welcome packet from the Down Syndrome Association of Charlotte. We were quickly embraced by this community of people through emails and Facebook. They cheered Sam on while he was in the hospital and they continued to invite us to event after event until we were finally able leave the haze of the ICU behind and start learning about what this journey could look like for us. While we've only attended one event so far, it's been amazing to see the way this community connects, supports, and encourages one another. I feel like I have a whole village of Down Syndrome parents at my fingertips at all times. It is an unimaginable comfort.
We were hooked up with the National Down Syndrome Society not long after we were discharged, and started receiving the monthly newsletters. A couple of months ago, I started hearing and reading about World Down Syndrome Day. If you look to the right, you'll see a button that will direct you to the NDSS website where you can learn more about this day.
March 21st (3/21...3:21...get it? Clever.) is World Down Syndrome Day. It began in 2006, but this year is a special year since it will be the first time it will be officially recognized by the United Nations.
So, in honor of this day, and in hopes to raise my own awareness and spread a little Down Syndrome love, I am going to be posting every day for the next 21 days. Come back and learn some more about Down Syndrome, a little more about my family's journey, and a lot of pictures of Sam.
If nothing else, come back for the pictures. He's pretty cute.