Wednesday, August 19, 2009

The Ties That Bind...

I've recently read some very heartfelt posts that my blogging friends have written regarding their connections to the Down Syndrome community.

For those of you who have read my most recent posts (ok, novels) about Vincentio's story, you know most of it already.

Still, I felt as though I needed to add a post to the topic.

You already know how V entered our lives.. with a bang.

We had no idea that he had DS, or any other congenital issue for that matter.

We were blessed from the very start that he was born in a hospital that was equipped to handle his delicate heart. They were so very supportive. Too much sometimes, every time I thought I had it together, they made me cry all over again.

The strange thing was that I wasn't crying because my son had Down Syndrome.

I was crying because I was scared to death that he might die.

You see, V was a preemie. Tiny and frail. His heart was damaged, his lungs were damaged. Something wasn't right with his blood.

The people that surrounded us those first hours, days, weeks, were amazing folks indeed.

They kept him alive, they kept us going, they gave us hope.

But somehow it always came back around to "how are you adjusting?"

Don't get me wrong, I was grateful for their consern and caring. It's just that I wasn't worried about how he was going to grow up and how we were going to deal with raising a child with Down Syndrome.

I was worried about whether or not he would live at all.

I was worried that I would never GET the chance to raise my child with Down Syndrome.

I guess the fact that he was so sick from the beginning gave me a different perspective.

I specifically remember a day when I sat in the NICU trying and failing once again to feed my son. Asking the nurse to hook up the feeding to his NG because it just wasn't happening. I felt defeated in that moment. Like there were just too many obstacles. That maybe it was just too much.

As I sat there, rocking V, a group of doctors came to give discharge instructions to a young couple a few beds down. I remember that they were very young. 19 or 20 maybe. This boy was there first child. He was big, much bigger than most of the babies in the unit. I could never quite understand why he was there at all. He seemed so normal.

The docs stood there, counseling the parents on how there son's care would work once he was discharged. Turns out he had Cystic Fibrosis. He would require weekly clinic visits, multiple daily meds and therapy. They told this young couple that it was in their best interest to not have any more children, that CF was genetic and they could pass it on. That more than likely he would, due to the severity in his case, be hospitalized often. More than likely he would need a double lung transplant within 3 to 5 years, and even then he would only live into his 20's.. if he was lucky.

How's that for a kick in the teeth. Your first and only child is going to live a miserable life and then die way too young.

I decided then and there that I could live with Down Syndrome.

Not only live with it, but be absolutely grateful for it.

If they could fix his heart, heal his lungs, make him well.. all the rest was cake.

Down Syndrome wasn't just something I could live with.

Most importantly, it was something that HE could live with.

That was all that mattered, that's all that has ever mattered.


  1. That was beautiful and EXACTLY how I felt the moment I learned of Zoey's heart defect.I just wanted to know that I would have an opportunity to watch her grow.That she would have the opportunity to grow.Down syndrome comes dead last on the list for us.Always has.Always will.Except for the list of what we love the MOST about her ... then it stands alone in first!!

  2. That was soo well said. When Wysdom was born I was sooo happy that he actually made it through labour and delivery as we ended up having a c section due to his falling heart rate. I was so happy he was alive and that has been the case since he has AVSD. Isn't funny how perspective kicks in right away.:)