Yesterday, Collin had his (hopefully?) first head and thoracic spine MRI. For those of you who don’t have MRIs of your brain bits every day, the thoracic spine is the upper bit of your spine, the cervical spine is the middle bit, and the lumbar spine is the lower bit. To look at the shape of the skull, and to diagnose what might be going on with headaches, there’s no reason to look at the full spine, just the cervical spine. In other words, they are looking for Chiari.
His MRI was in Santa Monica, at the same hospital that my surgery was at, in June. I made Bryon take the morning off of work, despite the fact that he has a team of people who have travelled out to meet with him all week. I couldn’t do the drive alone, and I couldn’t sit in a waiting room alone while my boy was in an MRI tube, being tested for something I gave to him. I just couldn’t.
Every time Collin complains of a headache, or symptom, I’ve sloughed it off as nothing. Half of me did it because I was afraid, and half of me did it because I was afraid that he was subconsciously picking up on me, and was imitating me. Even when the headaches have knocked him flat, which is happening with increasing regularity, I taught my mind to lock the fear away. I’ve held him in my lap, stroked his hair, and convinced myself that it’s not happening.
But, I know that it’s happening now. The MRI made it real. There’s no way to pretend that he’s not sick. The absences from school are adding up. The calls from the school nurse are piling on. The number of times he goes to sleep with ice packs around his head are increasing. He can barely raise his voice without triggering a headache, which means he gets them all the time, because with autism, let’s face it, he yells a lot. And, he seems to get them from running, jumping, or other physical activities associated with being a kid.
If and when the diagnosis is made, I’ll have two choices: face it head-on by digging in and helping my son. Or, I can wallow in self-pity, worry and depression. Every time I try to explain to Bryon how responsible I feel for this, he tells me that genetics is a lottery, and that there’s no way to have known. I understand that, of course. But, those are just logical arguments that are clearly correct…duh. The illogical heart, which ties me to my son, tells me that I didn’t protect him.
So, I didn’t go to his MRI appointment. On Sunday night, I looked at Bryon and I said what I’d been thinking all day, which was that although I feared being an awful mother for saying it, I didn’t think I could go. I was afraid I’d start to cry, or seem nervous, making Collin nervous. I didn’t want to ruin everything, forcing them to have to reschedule because Collin wouldn’t be able to stay still. Alas, I stayed home, and felt like the worst mother who ever had a child, all because I couldn’t keep my shit together. And worst of all, I couldn’t make a baby with a perfectly formed skull.
Apparently, when it’s a child in an MRI machine, they let the parent go in with the kid. I didn’t know this. Bryon got to hold, and pat, Collin’s legs the entire time. I was comforted by that thought when they got home, but also immediately freaked out. Just the image of my baby’s legs peeking out from that tube made me glad that I wasn’t there. I’m glad I didn’t have to see him like that, not without answers. It’s one thing to know that the purpose of the MRI is to verify that there’s no syrinx before operating, or to check for progress of X, Y, or Z, post-op. It’s quite another to check for what’s wrong, to make sure that your child doesn’t need brain surgery. As strange and grim as it sounds, when you already know what’s wrong, it’s easier. Better the devil you know, then the devil you don’t, right?
When Collin was an infant, he had to have a series of gastro-intestinal tests done. One of them was an X-Ray series of his belly. They strapped him to a stiff board, and rolled him over and over onto a table. He looked like an accident victim, strapped to a stabilization board. The image of my helpless baby, hysterically crying for his mother, terrified, cold and alone has stuck with me. I was afraid for him then; and, I’m afraid for him now.
I agonized over not going with them. I felt like I couldn’t have been a worse mother. I felt selfish. I put my own fear of his diagnosis, of my heartbreak, above his need for me. Bryon convinced me that it would be counter-productive for me to be there, and he was probably right. I could’ve held it together; but, Collin is tied to me like my own breathing, like my own heartbeat. He’d have known that I was upset, even if I’d been smiling. I can promise that this is the only thing I’ll miss. I just couldn’t bear the unknown again, not with my own son.
As I spiral, Bryon reminds me that we can only take this one step at a time. It’s the MRI right now. Then, in a few days, we’ll swing by UCLA to pick up the report and the disc, so we can scrutinize the images, attempt to self-diagnose and know nothing further than best guesses and random questions that mean nothing. Then, we’ll call the neurologist for a follow up. If he says Chiari, regardless of what words come out of his mouth next, we’ll be scheduling some second, third and fiftieth opinions with surgeons that we know already. Step, by step, by step.
I’m his mother; more than that, I’m his Chiarian mother. I’ve got plans and alternative plans, and alternative plans to alternative plans. I’ve got contingent plan B’s and C’s. Right now, all we have is questions with no answers. I just wish the question had never been asked.