Worst Mom In the World: Me

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.

I let them take Blue to Santa Monica, to the same hospital I had my last surgery, for the MRI. This is from a few days prior, Collin's first ride in the front seat. Look at that joy. He got to ride up front with Daddy to Santa Monica, AND have Jack in the Box on the way, so two special treats, which made the trip more bearable. I am glad I didn't face those halls, and that drive with them. But, I'm even more glad that I gave Bryon the gift of this joyous face, while riding in the front seat is still new and novel.

I let them take Blue to Santa Monica, to the same hospital I had my last surgery, for the MRI. This is from a few days prior, Collin's first ride in the front seat. Look at that joy. He got to ride up front with Daddy to Santa Monica, AND have Jack in the Box on the way, so two special treats, which made the trip more bearable. I am glad I didn't face those halls, and that drive with them. But, I'm even more glad that I gave Bryon the gift of this joyous face, while riding in the front seat is still new and novel.

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.

A very special present, from a very special boy. He bought this for me, with his own money. He sacrificed a treat for himself, to get me a gift, because he saw that a penguin was available in the school store, and he knew I like penguins. My boy, as challenging as he can be, is the sweetest, most generous person I know and I am grateful to know him, every day of his life, even if there's Gatorade behind this little dude, being given to him in hopes of stemming a headache.

A very special present, from a very special boy. He bought this for me, with his own money. He sacrificed a treat for himself, to get me a gift, because he saw that a penguin was available in the school store, and he knew I like penguins. My boy, as challenging as he can be, is the sweetest, most generous person I know and I am grateful to know him, every day of his life, even if there's Gatorade behind this little dude, being given to him in hopes of stemming a headache.

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.

Pushing Publish - Die Hard or Die

Yesterday, Bryon, ever-loving-doll that he is, suggested that I don’t shit-pot stir, and just save what I had to say for myself. He’s not wrong. He never is. Damn that boy’s eyes. But, I obviously posted it anyway, and he came, instantly, around to my side of the fence. Not because I smacked him around a little, but because I explained the following, and he’s an incredibly supportive dude. If you don’t have a partner like this, get you one. They’re fabulous to have around.

I’ve said this before. I started this because I’m sick. Being sick takes a toll. It wrecks you. It tears apart who you are inside and it makes you re-evaluate who you thought you were. It puts all the pieces on the table, and it makes you wonder if they were all from the same puzzle, or if maybe your kid dumped all the puzzles you own together, and you have a lot of sorting to do. It means that you do a lot of self-evaluation. When, shitty things happen, like being dropped by a friend because they’re a rotten person, for example, you don’t bounce back like you used to anymore. Life has a different meaning because, well, you almost didn’t have one.

My life has slowed down immensely. Instead of the standard daily grind of up, gym, shower, dressed, rush out to work, school, back home to prep dinner, and then repeat; I have the luxury of choosing when to rest my body, for as long as I need to. If I’m having a bad pain day, week or month, I can stay in my pajamas. I have to live this way now. Maybe for a while. Maybe forever. Maybe not. I don’t know. The certainty of uncertainty surrounding one’s health and wellness is another thing that takes a toll. I don’t know if I’ll wake up tomorrow well enough to do what’s on my calendar for the day, every day, any day; but still, I plan. No one knows what the future holds, but I know that mine is like an anvil, waiting to drop. Any day is the day I can be crippled by a Chiari headache. And, any day is the day that my surgery may fail.

Alas, I have a lot of time for contemplation and deep reflection. I have energy to spend on weighing issues that are bothering me, and why. I have time to, literally, just sit with my own mind. I wanted to share that side of being sick with the world. Not just the “this is what a headache” feels like side. Or, how many appointments there are, doctor’s visits, and the technical side of Chiari. There is a lot to Chiari that I’d hope to educate people on. But I want to share “life” with Chiari, or chronic illness, in general. I want to share my life.

When something is bothering me for so long, and so deeply that it’s not allowing me to write about anything else, it’s time to get it out there and over with, right? I’d even stopped journaling, and writing commissioned work because I just couldn’t get past it. I didn’t even want to think about it. Of course, the point stands, that I didn’t have to push the “publish” button, obviously. So, why take that step?

For that I have two reasons. Firstly, it’s disingenuous to say that I share this process, and then skip pushing publish on what’s been holding me back for over a month. I realize that I’m writing in a vacuum, where barely anyone is reading what I’m saying. But, I’m reading. And, that’s important, if nothing else. Secondly, finding that journal, and seeing those pages made me both devastated for the little girl I was, and exuberant, at the same time. It confirmed who I am because it confirmed what I remember to be true.

So, pushing the publish button was a way for that little girl to say to the world, “see, I’m not crazy, they’re crazy.” The world can be just me, myself and I for all I care; but, when you say something aloud, it becomes real in a different way. It was a very real way of acknowledging, for the little girl, who’s been treated like an enemy of the state her whole life, especially when she dares to stand up for herself, that she’s not been imagining things. It was important to establish that I shouldn’t doubt myself, especially in the very foundations of what made me who I am. In my ever-weakening short-term memory, this felt so important to me. It was important, to me, in this situation, that I plant my flag.

Half the reason I got hit as much as I did, or got as much shit as I did, when I was a little girl, was because I refused to roll over and take it. I stood my ground. I stood up, over and over again, and said, “no.” I refused to be bullied. I refused to apologize for things I wasn’t sorry for. I refused to be told that I was the worst thing that ever happened to anyone, which I was told on more than one occasion. And then, I got the fuck out of there. So now, I’m standing up again. I’m not as weak as anyone thinks I’ve become. Age and illness may have softened me. Time may have made me a grown-up. But, I’m still the same little girl who refuses to be pushed around. I’m now a grown woman who knows what’s right.

Part of being sick is learning what things you can and can’t change; but also learning how to live with them. I can’t change my skull. I can’t change my headaches. I can’t change the situation into which I was born. But, I can adjust how I accept and deal with these things to best affect change to lead to my best life. Now, having put the worst behind me, I feel ready to charge forward and deal with regular bits of life, and the day-to-day struggles of chronic illness, life with a busy military spouse, an autistic kiddo, and just life in general. Writing that last entry, and pushing publish was like lifting a ton of bricks off my chest, I suddenly feel ready to write, write and write, to talk about a thousand things that were behind that log jam. I am ready to face a new world, now.

And that’s why I did it. Phew!

Onto bigger and better things! Life goes on. Today, we’re off to be terrible parents by watching the best Christmas movie ever with my family: Die Hard. Violence, bad language, what could go wrong?

Not 100% sure, but I think this is sub-titled in Dutch, which is crazy-perfect considering the Dutch heritage presentation timing, right?

You’d be surprised how many people (most recently, the devout Evangelical Christians we just befriended), when we introduce ourselves say, “like in Die Hard!” So, I guess it’s time to introduce our impressionable child to the other parts of the clan McClean. He did his heritage presentation this week at school, in which he presented all about the seat of our clan in Scotland, and about mommy’s side in the Netherlands and Sinterklaas.

Look! He made this!! I'm so proud. After a twelve-hour day, filled with meltdowns, Collin took a project to school that he was ashamed of, and then played sick the next day, begging to make a new one. This is the result. He worked his butt off all day. AMAZING!

Look! He made this!! I'm so proud. After a twelve-hour day, filled with meltdowns, Collin took a project to school that he was ashamed of, and then played sick the next day, begging to make a new one. This is the result. He worked his butt off all day. AMAZING!

His Netherlands side. I'm particularly fond of his required family portrait because although he already used the picture of Grandma on the other draft, he said he liked this one better because it had mommy in it. Everyone all together now...awww.

His Netherlands side. I'm particularly fond of his required family portrait because although he already used the picture of Grandma on the other draft, he said he liked this one better because it had mommy in it. Everyone all together now...awww.

But, it’s way more fun to teach him to yell Yipee-kayy-yaay Mother-Fucker!...in an “age appropriate way.” He almost, accidentally, said “ass” yesterday, and I swear, he almost self-reported himself to The Pope, and he’s not even Catholic; so, I’m not even the slightest bit worried.