Wednesday, October 31, 2007

About us

I'm Joel. She's Mo. We're newspaper journalists from suburban Detroit.

Enough about us. The cute girl is Hope. She is awesome.

Hope was born on Halloween in 2007. She was teensy: 3 pounds, 15 ounces at 37 weeks, most of which was a magnificent shock of red hair and big, beautiful eyes.

Doctors didn't need long to diagnose her with Cornelia de Lange Syndrome. They had experience: Our son, Will, also had the syndrome. He lived 89 days in Neonatal Intensive Care before passing away Jan. 12, 2005.

Cornelia de Lange, CdLS, is a genetic syndrome caused by 1-2 stray genes. Genetically speaking, it's dominant: If you have the gene, you have the syndrome. So it hardly ever recurs in families, except very rare ones.

That's us.

We waited more than a year after Will died to try again. Mo's pregnancy was difficult. At 18 weeks, tests showed a heightened risk for Trisomy 18, another birth defect. That triggered numerous ultrasounds and echocardiograms. Eventually, Trisomy 18 was ruled out. But Hope still measured small in the womb and had some worrisome heart abnormalities. First, she measured in the 10th percentile. Then, the 5th. Toward the end of the pregnancy, she was off the growth chart altogether.

A few weeks before Halloween, we had a scary meeting with a group of doctors in a drab, charmless conference room. One nervously uttered words that had somehow had never occurred to us: "It's possible she has the same condition that your son had."

We were dumbstruck. It didn't seem possible. But it slowly dawned on us: Small size; heart defects; what else could it be? In retrospect, it seems obvious. At the time, the odds seemed so remote that it never seriously occurred to us.

And perhaps we just needed to believe it could never happen again. Halfway through the pregnancy, when there was serious concern about whether she would survive, we settled on her name: Hope.

The moment we saw her, we knew we chose well. She is a true-blue blessing, wonder and joy and source of pride and hope.

This blog attempts to capture some of those emotions, along with the highs, lows, fun, fear and frequent cluelessness about raising a special-needs daughter.

It's a collaborative effort. Or as much as possible for two head-strong folks: Joel writes most of the posts and cobbles together video; Mo edits, inspires and tries to tamp down the dorkiness.
We hope you like it.

1 comment:

suna said...

heart breaking story. thank you for telling it. she is a beauty. cyrus (cdls)is about a year older and doing very well, but gives us plenty of trouble too.