If you’ve been following our genetics journey, then you know I’ve been pretty transparent about all of it. Except I haven’t. Confession time: even though I kept saying I didn’t expect answers, I guess I did. Really deep down. Where moms of undiagnosed and rare kids keep their mom hopes hidden from the world.
When we left that first and last meeting, I locked a tiny bit of hope away and it kept me going through the bloodwork and waiting and phone tag. Even though it was unlikely that we would get answers, I still thought we might learn something. And we did. We learned that there is an 85-89% chance that Adelaide doesn’t have Angelman Syndrome. We learned that she doesn’t have several metabolic conditions. We learned that her heart wall isn’t at risk.
But moms in my position hear these fairytale stories about walking into a genetics office and the doctor saying, “We want to use a research grant for you. We think she might have fill-in-the-blank. We’ve been waiting to see someone as rare as your daughter.” Instead, we had a pretty uneventful journey.
And our journey is over. One of the last tests we did was not covered by insurance, so we knew that we wouldn’t be able to go further. We have spent almost one thousand dollars, and we aren’t done paying out. We knew that $24,000 for the next step was not possible. There was a minuscule chance that insurance would cover some of our seizure DNA panel, but it wasn’t guaranteed. A $13,000 gamble for one panel of tests just wasn’t going to work for us.
But it’s not just about the money. I asked myself if I would still go through with it if someone gave us a gigantic sack full of pirate doubloons. I really don’t know. There are so many other things Adelaide always needs. But it’s also the emotional toll. It’s difficult to keep going, knowing you may still end up with zero answers. It’s such a vulnerable place. And also a reminder that it can’t cure her anyway. No cure.
So I kept saying I was okay with no answers. But I guess part of me didn’t get the memo. I sobbed when we got the news that Adelaide’s DNA had not actually been sent off for the last two major tests. Still frozen. There at the Children’s Hospital if we need it.
And people spout off aphorisms and advice. I smile and nod as people say that so many other kids don’t get a diagnosis. So many other kids don’t get a syndrome. That it doesn’t change who she is or how we love her. But it’s hard to explain that I am grieving that our genetics journey is over. I just keep reminding myself that God knows every part of her DNA. He has always known.
I promised to be transparent on this journey. Few people talk about the steps. The cost. You only hear about the dream come true scenarios. But we didn’t get the fairytale ending. We didn’t get a hyphenated name or series of numbers and letters. We didn’t have a doctor say we were perfect for a grant.
What did we get? We got the typical consult with an amazing genetics counselor and a very highly qualified doctor, our child brought up for 30 seconds in a cross-department conference, phone calls, and bills. Would we do it again? Yes. What we did learn was beneficial. Would I figure out a way to actually be okay with learning very little? Not sure. I don’t think I can ever just turn it off. I think a part of me will always wonder what happened to her genetic makeup. I must make a choice to embrace that we can’t know. At least on this side of eternity.