The Perfect Storm.

No, this isn’t about Sandy. It’s also not about that movie I never did get around to seeing. This is about grief.

A very long time ago, I had another blog. A secret blog. *gasp* I know! Another amazing, inspiring blog and I have kept it from the world? Shocking and selfish. Or, maybe, it was not either of those things. Maybe it was just stuff I wanted to share with my parents and in-laws. The world will never know.

Yesterday I was discussing grief with friends, specifically how we grieve as parents of children with fragile X. How it’s a vicious cycle that keeps a grip on us from the day we are diagnosed until…well, I’m not really sure when. All I know is that I was knocked off my feet the day I found out that Caleb had fragile X and, even though I keep standing back up, it still has the power to send me to the ground over and over again. Just because it’s easier for me to stand back up doesn’t mean that the pain is any less. It still hurts.

Separately from that discussion I decided I wanted to find some pictures of Caleb’s hair, he has spectacular hair. I love every single curl on that head and it makes my heart happy to look at him. So I pulled up that old blog to find pictures of him as a baby and I found something else. I found me. I found the me I was before fragile X. I found the mom I was, the one I should be. The one I would be if I’d never heard of fragile X syndrome. If the right X had passed between us.

I wrote this 14 days before Caleb arrived.

Waiting for Caleb

Eric and I were delighted to announce to all of our friends and family in November 2003 that we were expecting our first child. We waited until I was nearly 12 weeks pregnant before we made the announcement. I had taken a picture of my positive pregnancy test for the little one’s baby book. When the time came to tell my Mom and Dad we simply handed a copy of the picture to Mom. Mom seemed surprised but hid it very well, she then handed the picture to Dad. He couldn’t quite make out the writing and finally Mom had to tell him what he was looking at. They were both very happy for us, as we knew they would be.

When I was 18 weeks along we had a routine ultrasound. At first the Dr. had a little trouble getting the baby to cooperate, he appeared to be as camera shy as I am, lol. Eventually, after some prodding, the Dr. was able to get a few good profile shots. After the Dr. took a few measurements of the baby he decided to have a look around. He asked if we wanted to know the sex of the baby, obviously, we said yes. He zoomed way in on the baby leaving no doubt that he was in fact a boy, lol.

The ultrasound was an amazing, awe inspiring experience. Seeing our little guy’s hands and feet and watching him move brought tears to our eyes. But true to form we found some humor in the situation as well. I commented on how cute he is and Eric’s responded, “Yep, he’s taking after me already.”

He’s so modest. By the end of the ultrasound Bullet was pretty upset about the whole experience and he brought his little fists up by his face so he looked like a little boxer. I made the obvious observation, “Awwww, look, he’s pissed off! He takes after me too!”

We both enjoyed the pregnancy so much, the only reason we won’t be sorry it ended is because we’ll have a perfect, little boy to love and spoil.

It makes me so unbearably sad to think about her…to think about that person who expected the whole world to sparkle simply because it always had before.

There are some positives, though, starting with this one…

A really, really, ridiculously cute positive.