Where is a megaphone when you need one.

I found out that Jack had Down syndrome on May 15th at 1:36 pm. I was laying in my bed taking a nap. Lily was at preschool, I was alone in the house. I knew the results were close to being done as I had already harassed April twice wondering if they had any information. Then the phone rang and I saw the caller ID FETAL WOMENS CENTER appear.

She said she would call the moment the results came in. . .


This picture was taken the morning before I found out. I was sick with worry about the impending results. I would try and convince myself that everything would be fine. Our baby would be healthy. This would eventually be a distant memory that on occasion would come up, "yeah, we had a close scare too with our fourth, but, as you can see everything turned out just fine."

Fine. Just fine.

It's interesting how common sayings take on new meaning when it touches you so personally. Almost without fail when people are expecting a child they'll talk about whether it's a boy or girl. Then more often than not, they throw their hands up and say something like, "doesn't matter just so long as he or she is healthy."

What if he or she isn't?

What then? Does that somehow matter for how you will feel about them? Or how much their life is worth? Isn't it enough that they are just yours, however they get to come to you?


I spent the next weeks and months searching out these questions and the other million that popped into my brain, "is he going to live with us when he's 32?"

Jack stopped being the hopes of my sweet unborn child and became Down syndrome. That is all I could think of when I thought of him. Even if at first the thought didn't start there it would inevitably end up circling around that unknown. He became my living, growing. . .worry. There were days towards the end that I would be able to convince myself for a couple of days how things were going to be just fine. Fine -- that word again.

But, deep down, in an ugly part of me I was afraid. Afraid to admit that I was worried that I wouldn't love Jack the same. It's hard to write about it even now. It's so personal, unpolished, un-perfect. Not the kind of mother I hope that I am.

I desperately searched the internet for information. Spending hours pouring over blogs, you-tube, message boards, web-sites that claimed to increase intelligence for people with Down syndrome. I watched hours of videos posted by strangers, anything with someone with Down syndrome in it. When I'd see someone that seemed "high functioning" my hopes would soar. But, then I would come across someone who wasn't and I would be crushed.

I was so bothered that I didn't already know what camp Jack would fit into. I called countless strangers who were a friend of a friend and even some a friend of a friend of a friend. I asked them all similar questions, but, what I was really interested in was how they felt about their child. Except I was too chicken to give voice to those pathetic feelings. So, I would talk but mostly listen, wait and hope. Desperately trying to quiet my fears.

I listened to them all; Shelly, Jane, Karen, Bethany, Kelly, Beth, Cheryl, Tara, Lindsay, Kim, Mariah. Some would talk for hours, and I was more than happy to listen. I will forever be grateful for the kindness of these women. They gave me their heart when mine was breaking. They offered me hope, a hope that was my dental floss of a life line.

Without fail they all said the same things;

You will love this baby so much.
One day, you'll see that this was the greatest thing that happened to your family.
You will have so much joy.


I WISH THEY HAD USED A MEGAPHONE.


Shelly with her not-so-perfect but completely perfect child.

Because, while I heard them, I didn't really hear them. I didn't absorb the depth and breadth of what they were saying. Of how true those words were. How honestly, it just doesn't matter that everything isn't just fine.


. . .because who wants fine, almost everyone gets fine. You get extraordinary.