So you know what? I didn't even call anyone this time. I can't. I can't call everyone again with "unfortunate" news about my family, because I can't stand to hear the hurt in their voices. Hurt, followed by a whole lot of "I have no idea what to say" because who does?
So I'll just tell you, Imaginary Internet Friends, and you can say whatever it is that gets said in a situation like this and we'll go from there. Because frankly, this is getting a little ridiculous.
Yesterday, my sister Healy called me about her son, Charlie. The first words out of her mouth were, "It just never ends."
I hoped against hope that she was just fed up with something stupid, like traffic. Like a bad day at work.
Please be about traffic. Please don't be about Charlie. Please let Charlie be okay.
You may remember that in addition to dealing with my dad's death and the subsequent nightmare that has been selling his house, Healy and her husband, Brian went through a traumatic few weeks as their dog suddenly collapsed, was paralyzed, and eventually put down because of spinal cancer? And that they were dealing with having a baby boy at the same time?
What I didn't mention about them is that Charlie -- who is as happy and bright-eyed a baby as you've ever seen -- has had some difficulties. Challenges. He hasn't been hitting the developmental milestones on time, and his doctors wanted him to be tested.
It could be a lot of things, Healy said. Or nothing.
But as the course of our lives seems to be going, it's not nothing.
Charlie was diagnosed yesterday with something called Fragile-X Syndrome.
Are you fucking kidding me?
And here is where I lose my shit, and don't know what to scream about first.
Okay, okay. In case you don't feel like looking it up, here's what we know. We know that it is a genetic disorder that is present in Charlie. We know that it results, when symptoms are evident...
...well. The truth is, I'm embarrassed to write it, and I'm embarrassed that I'm embarrassed. This is my nephew, my flesh and my blood and --
-- and how can this be???-- and Fragile-X is a form of mental retardation. The "good" news is that it is a mild form of mental retardation, or at least it can be. There's a lot we don't know yet. My sister will go in for genetic counseling on Monday and we will learn more, so I can't answer many questions. Any questions, really. The doctor "warned" us to not go reading all sorts of incorrect information on the internet. (Yeah, right. Too late!)
What I do know is that it's possible (maybe probable) that my sister is the carrier. She will be tested. If she is, then Samantha and I will also have to be tested. And if we are also carriers...
What if...what if...what if...
Do you have any idea how many questions this raises?
Healy has a beautiful, happy baby boy. Who has a genetic defect, the likes of which most mothers pray they never have to deal with. And she loves her son with all her heart and wouldn't change anything about bringing him into the world and so how does she reconcile any of this?
How can all these mothers out there have perfectly healthy, normal kids? And then even with all our losses, how can the three of us and my dad and my mom and their moms and dads and our aunts and uncles all be mentally "normal" and --
-- and even really fucking smart, thankyouverymuch.-- and not have any signs and then there's Charlie and I don't even know what you say. This doesn't make him not smart, right? It just makes him delayed, right?
I don't want to feel sorry for him, or for Healy or Brian. And I'm not. It's just.
I guess it's possible that he may only have slight learning disabilities. That's more "good" news.
And also -- ironically? fortuitously? -- Healy is the director of a teaching center for children with learning disabilities. So regardless of Charlie's diagnosis or prognosis or whatever, he will have the best teachers in and out of his home for his whole life.
But god damn. I can't help but feel like this is wholly and completely unfair.