The Best Thing About This Year is: You Being You

Your hair fell out this year, all of it. It’s not something that happens to most ten year olds. Not something you understood. Not something we knew how to parent through. But you handled it. Better than I ever expected.

There are moments of sincere sadness; “I miss my hair” is a familiar refrain in our house. A hug and understanding comment is all you need to be comforted and move right on with life. You’re quick to find humour in the situation – apparently, it is both hilarious and wonderful that you now look like Uncle Lex and Grandpa Bill. Not all bald people share your perspective, so loudly pointing it out to them is a habit we’re going to have to work on. You do love attention more than most. You’ve never acted embarrassed or self-conscious, and why should you?

When I finally shaved your head, you objected more to having to change your shirt after than the act itself, even though I was gulping back tears. The only part of this that truly angers and offends you is when some helpful soul points out that your hair will grow back. “NO! No, no, no, no…” you shout with a disgusted look on your face. Who wants that gross old hair, that fell out in chunks and left you with hairy clothes and pillow cases and even food?

You are growing new hair. This is the only thing you want, to move forward. It’s the only direction that makes sense. Preferably with blue or yellow hair, depending on your mood. The baby soft half-inch that’s grown back so far is a lovely brown, something you’ve not quite resigned yourself to. But I’m sure you’ll make peace with it, the way you do with everything. Honestly, wholeheartedly, with a lovely and unique perspective.

Losing your hair was a hard thing, but not nearly the worst part of cancer. The long months in hospital, the repeated isolation orders, the pain, the machines and wires and tests. The near-daily treks to the clinic when you finally got home. Being too weak to walk up the stairs, too tired to get out of bed. The yucky tummy that still hasn’t gone away, the “diiiiiis-gusting” medicine, the tube in your nose, and the many, many pokes that you hate with a passion. Having to be held down for this procedure or that one. Mostly, being so very out of control so much of the time. For you, that is the hardest part.

You are the toughest person I know. Really. I can’t wrap my mind around everything you have endured, are enduring still.

You have a spark of life that fights through. You are you, and nothing will ever change that. You make that clear to everyone who steps into your domain. You are not a passive patient. There is no way you’ll allow anyone to examine you or do their work until they earn the right. It is exhausting sometimes, but good for all of us. Sometimes we grown ups forget to be human when we’re focused on getting things done. You love the “cleaning nurses” and the “food nurses” best of all – demanding names from each of them, asking for them when they’re gone. In your mind, they are the most valuable, because they bring something tangible to you and you can count on them to come back day after day (and never poke or prod).

Your little rituals make life feel safe. Fred (the IV pole) has had several new faces taped to him over the year, but he’s a constant friend and someone you are glad to see and drag around the hospital with you. Pluto may be a stuffed dog, but he’s an old pro at getting his vitals taken. When we get home you play “Dr. B” and give him many of the same treatments you’ve endured yourself. He’s also the one who feels things the most, crying and woofing when he’s feeling scared or shy or sad. Hearing you comfort him gives us the clues we need to know what you need. On hard days you watch the same show over and over again, or ask to listen to “the lady” (a meditation app on relaxation) whose voice could induce a deep sleep while reading the phone book, or we listen to “A Whole New World” as you tell me all about the magic carpet ride you’re going to take around the world, and all the things you’ll see and do. When eating is hard, as you feel both ravenous and horribly nauseous, we watch the Food network all day long and write menus in crayon.

It has been a hard year. A horrible, scary, and somehow life-affirming year. It’s such a terribly cliché thing to say that you’re my hero (cue cheesy 80s music). As a writer I should be able to think of a better way to say it, but it really has been such an exhausting year. I’ll just say that loving you is one of the best things I’ve ever done or ever will do.

Happy Birthday!
Love

Mom

Happy Birthday to the spunkiest 11-year-old I know!

Where to even begin describing all that you have been through this year? When you turned 10, we had no idea that you were about to embark on the hardest year of your life – a year that no child, no person, should ever have to face.

When I think about this year, the first word that comes to mind is “unfair.” It is not fair that you got cancer. It is not fair that you lost your hair. It is not fair that you had to spend half your year in the hospital, miss Halloween and Christmas, rarely leave the house, never see your friends, have to face a million hard and painful medical procedures, deal with infection after infection, get woken up every night for medicine, and generally feel miserable all the time. My heart hurt for me, and for your mom, and for your sisters and brother… but most of all, it hurt for you.

But you never ask questions of fairness. You don’t wonder why this happened or when it’s going to end. You just deal with what comes your way each and every day. Not always happily (and who can blame you), but always bravely. There have been a lot of tears this year, for sure, but there have also been a lot of laughs. Nothing – NOTHING! – can destroy your spirit.

Instead of moaning about losing your hair, like I would, you’ve made jokes about how you look “like Uncle Lex,” and assured us that when it grows back, it will definitely be blue. When you have to swallow yet another gross medication, you talk about how the “strong medicine” is chasing the unhealthy cells away. You barely even flinch when we do six toe pokes a day each month when the wretched diabetes returns.

On the night we got the news, I carried you to bed and looked at your peaceful face, trying to convince myself that nothing had changed. Of course, I was wrong. Almost everything had changed. Most of all, that was the night you became my hero.

So here’s to you, my inspiration. It’s going to get better from here on out, and we’re going to celebrate every step of the way – starting today, with your birthday. Happy Birthday, B!

Love,

Dad