Turns out, zebras give birth to baby zebras. Or at least half zebras, whatever that is. I’ve got two in my house and one of them is having surgery tomorrow. Evan needs tubes in his ears. For most kids, this is the surgery any parent would pick if they had to choose one for their child to have. But for mine, it’s complicated. Big time. How?

Well, first my specific genetic mutation (associated with periodic paralysis), puts him at high risk for malignant hyperthermia. In fact, that’s the first thing that would pop up in the literature as a strong association, even before periodic paralysis. Google says, “Malignant hyperthermia (MH) is a disease that causes a fast rise in body temperature and severe muscle contractions when someone with the MH gets general anesthesia. MH is passed down through families.Hyperthermia means high body temperature.”

Here’s where the complicated gets even more complicated. Evan has x-linked ichthyosis. Whew. That’s the first time I’ve said those words publicly. I don’t know why it took me so long. I’ll save you another Google search: “X–linked ichthyosis (XLI) (also known as “) is a skin condition caused by the hereditary deficiency of the steroid sulfatase (STS) enzyme that affects 1 in 2000 to 1 in 6000 males. XLI manifests with dry, scaly skin and is due to deletions or mutations in the STS gene.”

When your skin barrier is compromised, it causes a whole host of issues. The one of most concern regarding tomorrow’s operation?Temperature regulation. Evan’s skin cells don’t shed like the rest of us, and he doesn’t sweat like people not affected by ichthyosis, so his ability to cool himself is limited. Swings in either direction (too hot or too cold) can be quick and dramatic. That’s on a typical day. I think you see where I’m headed…

Todd has had a couple of conversations with the anesthesiologist, and they’ve come up with a plan. He explained it in technical medical terms. I didn’t understand it. The important thing is, they’re on top of it. Evan’s having the surgery at the big hospital in town instead of the outpatient facility in case something goes wrong. I’m thankful for that.

I wouldn’t trade my gorgeous baby boy for any other in the world. Yet sometimes I worry he’ll be plagued with the same issue I face on a daily basis. How could someone who “looks so good” on the outside have anything medically serious going on? I get that a lot. He probably will too. But managing his skin is constant. Some days I feel like it’s no big deal and others put me in despair as to how to help him. Right now Evan can’t talk, so Todd and I have to be his advocates and caregivers. It’s a lot. Here’s what it looks like right now:

• Checking his skin at every diaper change to check for dryness or scaliness.
• Researching an ever-changing rotation of different (expensive) creams because what worked to solve the issue two weeks ago might do harm today.
• Remembering to take into account how temperature, illness, humidity, or how many fluids Evan has consumed might affect his skin.
• Dressing him in layers (always!) so I can adjust based on how hot/cold his skin looks/feels at the moment.
• Bringing a cooling blanket, fans and ice water everywhere we go in the summer. Always. Always. Always.
• Cleaning all the things all the time because his immune system is weaker than other children (from his little body working so hard all the time). This has also affected our ability to vaccinate.
• Trying not to panic when he gets a fever in case it doesn’t go down.
• Avoiding perfumes, chemicals and anything else that might cause irritation.

Every person who has XLI has it to varying degrees. It’s a constant game of trial and error. When you have a person who cannot talk and tell you how they feel, you’re bound to make mistakes. And when your son has something so rare that doctor’s have to ask you how to spell it, you become very thankful for the internet. That’s how we met Darcie; she’s the angel sent to Todd and me who has raised three sons affected by it. (Darcie: we love you.)

I found out early in my pregnancy with Evan that I was a carrier for XLI. When labs didn’t come back as expected, honestly, XLI was the very best option I could hope for. Even still, it put both of us at risk. I’ll try not to be too technical, but the same enzyme that’s lacking to create the condition affects the development of the placenta. Translation: Evan was at risk for sudden death the entire pregnancy. That was as stressful as it sounds. And if having an irreparably injured pelvis isn’t enough reason for a c-section, many women who carry babies with XLI have labors that fail to progress.

Generally speaking, women are carriers of this type of ichthyosis and men are affected. It means a higher risk of certain cancers, and corneal opacities (that may or may not affect eyesight). There’s also a study that showed a strong correlation to autism and ADHD, but I can’t worry about any of those things right now.

“Sufficient for the day is its own trouble.” That’s what the Bible says in Matthew 6:34. Do you know what it says right before that? “Do not be anxious about tomorrow, for tomorrow will be anxious for itself.” I’m not there yet. It’s my baby, and it’s hard not to worry about my baby. But here’s the truth: God loves my baby boy more than I ever could. He’s not surprised by anything.

P.S. I’m gonna write about my appointment with the specialist. I promise. I’ve just been processing it all. It needs its own post, and my son needed your prayers first.