Hannah's Story

Hannah is the inspiration for this story, and in many ways for our lives at this point.

We've been blessed with children. Donn has three from a previous marriage, and Janet has one from a previous marriage. Hannah is the one we have in common, a child long waited for and prayed for. There were challenges during the pregnancy, a conception that followed a miscarriage a year earlier. But aggressive observation during the pregnancy showed a normal heart and kidneys, and normal brain development. When she was born, everything appeared normal. We breathed a sigh of relief.

Each month Dr. Lana Fox checked Hannah, at first as routine, and then, because she wasn't gaining weight, to check on development. Each time she frowned just a little more worriedly, but, she said, perhaps Hannah was just tiny. After all, some kids have to anchor the lower part of the bell-shaped curve for "normal" growth.

But she was missingHannah Bunny other benchmarks. She didn't roll over at the right now, she didn't smile, she didn't bring her hands to midline and hold stuff. Finally, when Hannah was ten months old, Dr. Fox suggested we take Hannah for genetic testing, since there had been the two-strand umbilical cord, and we were older parents.

Dr. Andersen did blood tests that confirmed Hannah had an extremely rare condition: Trisomy 14 Mosaic Partial. According to a study we found dating from 1995, there are only 15 to 20 people like her known in the world at any given time. (There may be many others, especially in less-developed countries, who are simply diagnosed with cerebral palsy, but only these few are identified at any given time.)

What does that mean?

Humans have 23 pairs of chromosomes. "Trisomy 14" means there is an extra chromosome on Hannah's 14th chromosome pair. "Mosaic" means it's not in all her body's cells, just a percentage. (The blood sample showed about 50% damaged cells, but other organs could have vastly differing mixes.) "Partial" means it's not a complete chromosome, just a part of one.

Here are the effects:

All of it is important, because if Hannah had full Trisomy 14, she probably would never have been born, or else would not have survived long after birth. We now know many families who have faced that challenge.

And she has the most beautiful, big, stunning blue eyes that look right through to your soul, shaded by gorgeous eyelashes the envy of any super model.

Hannah has ongoing medical challenges, as do most people with trisomy conditions. You can read the details of her medical journey at a companion site, Guiding Your Special Needs Child.

People inevitably ask what the future holds for Hannah. Because her condition is so rare, leaving no statistically effective medical database available on which to base predictions, we can't predict. But here's a more important fact: no one can really predict the future for any of their children. We can talk in terms of statistical likelihood, but that doesn't determine the future. An 80 percent chance of rain doesn't mean that it's going to rain, just that it's wise to carry an umbrella.

The only practical difference is that most people live with the illusion of certainty, which is why it is so devastating when the unexpected happens. It's not that we "expect the unexpected"; rather, we have seen past the illusion of certainty. All we have is this moment. We prepare for the future, but as a present-moment activity, ready to instantly go in a different direction when the present moment demands it.

We have learned the futility of thinking about things like, "If you could change the past/the future, would you?" Because we can't. All we can do is live right now. And we have found that this is enough.

If you are here, it is likely that you have a person in your life who is special to you the way Hannah is to us. Here's what you need to know: right now, this moment, is enough. Learn from the past, but don't live there. Prepare for the future as best you can according to what you can see right now, but don't live in the future. It's not just a slogan. One day at a time is too much—sometimes thinking about everything that is on the agenda for the day is too overwhelming. We've found there's no use fretting about the day's agenda, because it's going to change anyway. This moment. It is doable.

When I remember this (and I do forget quite frequently), it makes this moment so wonderful. Hannah has taught me this. I think people sometimes think Hannah must be a burden to us, but I don't experience her that way. Yes, life is very different from what I thought it was going to be, but that was the illusion of control. I experience Hannah as my greatest teacher, and in this moment I am so grateful for her.

May this moment, right now, somehow be a blessing for you.