Not sure that anyone reads this-- I certainly don't think many do at this point. (Or ever did...) But regardless, if I can help get the word out about this, it's worth posting here.
---------------------
X is a miracle. Which is not to say that every child isn't a miracle-- because every child certainly is. But really, everything about him is miraculous. It's a miracle that we conceived him so easily. It's a miracle that he does not have the genetic disease I'm a carrier for. It's a miracle that he isn't even a carrier like me. It's a miracle that he was a champ through the genetic testing we did when he was just 11.5 weeks old (in utero). It's a miracle that he stayed put despite my constant contractions and pre-term labor starting at 29 weeks. And, it's a miracle he made it through his complicated birth.
But the miracle I'm most thankful for is his set of good, healthy 46 chromosomes. There was a 25-30% chance that he would have a disorder called Patau Syndrome, and a 50% chance that he would be a carrier like me. And because of the effect aging has on these things, once I turn 30, the chance of passing on my bad chromosome will increase exponentially. So, one of my biggest fears around having a second child is the fact that, for now, our chances of having a healthy child are good-- but not as good as they were with X.
This past summer, an old co-worker lived out what I consider to be one of my biggest fears. This former co-worker of mine isn't someone I would ever consider to be more than an acquaintance, but the journey she has been on has impacted me tremendously. In June, after an uneventful pregnancy, she gave birth to a perfect baby boy they named Noah. Within 24 hours though, it was clear that something was wrong. He wasn't breathing well, and he was placed in the NICU. He just never really thrived, his body wasn't quite working properly, and after 12.5 days she and her husband received confirmation that their son had a terminal genetic condition. They took him off the machines, held him for the first time in days, and on the 13th day of his life, they held their boy as he went to heaven.
While most people respond to situations like this saying "I can't imagine..." My response was "I already did imagine, and now they're living my most awful imaginings." But she and her husband have traveled this journey with more grace and courage than I can fathom. And their boy has already had a amazing impact on this world. For myself, my fear around passing on Patau Syndrome has decreased. I still fear the whole idea of it... but I see how it's possible to live through experiencing that fear.
As a way to honor Noah's life, and to promote his legacy, Noah's parents have started #13daysofrainbows. (A little bit more information is on Noah's mom's blog, which you can get to by clicking here.) Starting on what would've been Noah's 6 month birthday, and in the 13 days leading to Christmas, Noah's parents are encouraging people to do an act of kindness, or if you're feeling ambitious, 13 acts of kindness. Either way, they're encouraging these acts of kindness to be done in Noah's name. Then, the idea is to take a picture of that act and post it on Facebook and Instagram with the hashtag #13daysofrainbows.
I'll be doing something this Advent, for Noah. Because God knows that it was only by a miracle that my healthy, perfect toddler sleeps soundly in his bedroom.
Please join me in spreading a little bit of Christmas cheer, and in honoring Noah with #13daysofrainbows.
