The trouble with the too small sneakers

Dear Max,

Today you turn 11, and I'm not quite sure how that happened but somehow it snuck up on me. Your pants are getting shorter on you, the winter jacket that was humongous last year is barely zipping up past your belly and your beloved Lightning McQueen sneakers are dangerously close to not fitting.

I have been hoping hard that they'll last till the end of the month, when we're going to Disneyland and Cars Land. You've already packed your new Lightning McQueen suitcase with clothes and various Cars paraphernalia, and this weekend you toted it everywhere, gleefully pointing to it and your sneakers. Technically, you're not supposed wear them—they give your feet no support or stability whatsoever. You really should be in the foot braces you wear on weekdays. Especially since last summer you had to get casts on both feet because they were turning in, and I don't want to put you through that again.

So I let you wear your beloved Lightning McQueen sneaks just a couple days a week. You've been through four pairs. I dread the day when they get too small and I have to tell you that there are no bigger ones after these, size 13. And that, my love, is one major problem in this world.

Too many people don't get that an 11-year-old would still want to wear Lightning McQueen sneakers. They may not understand why you talk, move and act the way you do. So often, as I've learned these past years, people aren't able to see beyond their visions of what a kid should "be" like at different ages.

And to that I say: It's not you, Max. It's them.

Sometimes, I see adults and kids staring. When you were little, this used to upset me, but I've come to accept that people don't mean to be rude or mean. Chances are they don't have anyone with cerebral palsy or other special needs in their lives so they're not sure what to make of you, Max. They can't tell that in many ways, you are a kid like any other kid. They can't see the ability.

I understand why they don't get it. Until I had you, I'd never been close with anyone who had special needs. You have opened my mind to a broader spectrum of diversity. You have changed the mind-sets of people in our families, our neighborhood and others who have the pleasure of knowing you. We do not think of you as disabled. To us, you are Max.

You never notice the stares, and even if you did I suspect you wouldn't care because you are completely comfortable with who you are: a Lightning-McQueen-loving, mac-'n-cheese-and-ketchup-eating, purple-and-police-obsessed young man. An 11-year-old who still squeals with delight at bubbles, silly faces, a trip through the car wash, a new container of Ben & Jerry's Chocolate Fudge Brownie in the freezer, the sight of the year's first snow. Daddy calls them your "happy sounds" and they bring us both so much joy.

When I tucked you into bed last night, your final hours of being 10, tears came to my eyes. You looked at me worried and said, "Eye-ing." (You haven't yet mastered the letter "c," but I think you will.) I gave you a big hug and smiled. I wasn't thinking of that day 11 years ago when we found out you'd had a stroke. I was melancholy that my baby is getting bigger, the way moms get.

Max, I couldn't be any prouder of you. You're reading many more words. You are increasingly articulating what's on your mind. You have gotten braver about venturing to new places, including the movies and busy restaurants that would have once made you run right out the door. You have learned to open your arms and give hugs, especially when I present you with some Lightning McQueen piece of merchandise. (Your dad and I joked about buying you Disney stock as a birthday present.)

I love the determined look on your face when you type out words on the speech app on the iPad, how excited you are when you know the math homework answers, the way your voice sounds every time you say a new phrase (popular now: "let's go!"). I love that whenever you're eager to be somewhere, you ask "Now?" (When we told you months ago that we'd be visiting Disneyland in December, you said "Now?") I love your cheeks that remain deliciously pump, your beautiful head of hair, the brightness that shines in your eyes.

As your mom, your cheerleader and your publicist, I am here to spread word of your greatness. (One of these years, some kid is going to sue their parents for blogging about him, and I hope it's not you.) I yearn for people to see you, not just the CP. Sometimes, when I notice others looking, I'll prompt you, "Say hi! Tell them your name" to break the ice. If they start talking over you, as if you're not there, I'll say, "This is Max!" and introduce you.

They don't know, Max. They don't know...yet.

To me, you are perfect—well, as perfect as any child is. I could do without the screeching when you're upset and your new-found habit of stomping on the living room floor as you sit and watch TV, which makes the lights in the ceiling fixture upstairs tinkle. I could also do without your little sister's attitude, as you know because when she gets obnoxious I'll shoot you a "What is up with her?" look and you smile knowingly as if to say, "I'm not the only one with special needs in this family!"

Lately, I'm fascinated by your flourishing imagination. This weekend, at the supermarket, you walked over to a closed register lane, put your Cars suitcase on the conveyor belt and pretended to have me pay for it. Then you put my ten dollars in the suitcase.

My birthday wishes for you: Keep right on loving Lightning McQueen, playing with toy cars and trains, scribbling in purple crayon only, giggling at snowflakes and believing in Mickey Mouse, birthday parties and all that's magical. I'm sorry there won't be another pair of the Lightning McQueen sneakers like these but we'll find you a cool new kind, promise. You're not getting "too old" for any of this. You are who you are, and who you are is amazing. My birthday wish for the people you encounter in this world? To see that, too.

Love,

Mommy