Monday, December 10, 2018

Super-sweet sixteen

It's been sixteen years since you were born, beautiful boy—sixteen years filled with progress, accomplishments, achievements and wins. You have succeeded, against all odds, and you keep right on doing so. I'll say it once more: If only those grim NICU doctors could see you now. I wish that I could have known all the greatness that lay in store for you. These are the wonders Daddy and I couldn't have imagined back then—and that we are grateful for every, single day.

16. We couldn't have imagined how strong you'd get. As you lay there in the NICU incubator, hooked up to all those wires and tubes, I'd stare down at you and will you to wake up. One day, I read "Oh, The Places You'll Go" to you with such feeling that a nurse asked me to quiet down. When I finally got to hold you, I whispered again and again, "You are going to get through this."

15. We couldn't have imagined just how much your brain would blossom. Once, we saw the MRI film of the stroke. And we've never looked at it again. We learned to just look at you.

14. We couldn't have imagined all the joy you'd bring us. You chuckled for the first time when you were close to three months old, filling my heart with hope. You have the sunniest disposition, one that has charmed your peers, therapists, doctors, teachers, counselors and basically anyone who's part of your life. Your smile actually can light up an entire room, just one of your many gifts.

13. We couldn't have imagined all the pride you'd bring us, either. We weren't close with any people who have disabilities before you were born. We didn't know any families who had children with disabilities. We didn't realize that having a disability doesn't affect a person's determination or spirit. We didn't know all the abilities you would have. And wow, have you shown us.

12. We couldn't have imagined you'd crawl, walk, ride a bike, go up and down stairs on your own, feed yourself, drink by yourself, hang out in the house by yourself, step into the car by yourself or generally get so independent. Daddy and I will never forget when you were five years old and the car showed up to take us to the airport to Disney World and before we knew it you'd bolted down the front steps, the first time we'd seen you do that.

11. We couldn't have imagined you'd speak words or communicate like you do, let alone that you'd turn into a teen who regularly tells us, "I KNOW!" So. Typical.

10. We couldn't have imagined you'd have such an awesome sense of humor, or that one day you'd be teasing us. This weekend, I got off the phone with a friend as I was buckling you into the car and I a few seconds later I asked, "Where's my phone?!" Because as you know, I misplace it every ten minutes. And you pointed to it right there in my hand and said, "HA HA HA HA HA, MOMMY!"

9. We couldn't have imagined you'd learn to do math, spell or read, or that when we are out driving you read the road and street signs to us. Or that you'd have a visual memory that comes in as handy as Waze does.

8. We couldn't have imagined you'd develop such passions—purple! Spaghetti! Car washes! Mac 'n cheese! Lightning McQueen! Stuffed shells! Chicago! Jamaica! Orlando! All the pasta! You know what you want. Oh, boy, do you ever.

7. We couldn't have imagined you'd have career goals, Fireman Max. And we will help you achieve them.

6. We couldn't have imagined what a pain in the ass you'd be at times—or that we could ever feel that way about you. Way back when, we felt only pity. As the years passed, we came to view you in the same ways parents generally view their children. Which is to say: You're often awesome and at times you are a pain in the ass. (Yes, we know, we are too.)

5. We couldn't have imagined how handsome you'd be. You were born chubalicious and you aced cuteness but now, you are one good-looking dude. Watch out, ladies!

4. We really couldn't have imagined all the places you'd go. The boy who once refused to eat anywhere else other than at the greasy spoon near our house (seated only in the booth by the bathroom) and who feared movies and shows is now the boy who never wants to stay home, who goes to movies alone and who attends sleepaway camp.

3. We couldn't have imagined just how emotionally astute you'd be. You can always tell when one of us is upset, and you always try to make things better. You are the United Nations of our family.

2.  We couldn't have imagined what a great brother you'd be, to your younger sis or to your little bro.

1. Sixteen years ago, as Daddy and I sat in the NICU, devastated, listening to the pediatric neurologist tell us that you'd have a stroke, we couldn't have imagined how lucky we'd feel someday. And we do.

We love you, Max. May sixteen be your sweetest year yet.


  1. Happy, Happy Birthday Max! You not only are amazing to your parents, but also to readers of this blog!

  2. So beautiful - I am crying as I remember all these years as well - enjoy celebrating the young man your Max is. I am so happy for you all.

  3. Fireman Max….
    Happy, happy, happy sixteenth birthday to one smart and brilliant dude!! ;)
    Peace out, Mary Lou

    1. Aw, thanks, Mary Lou! Always glad to hear from you.

  4. 16 already eh? With those good looks he'll have a girlfriend in no time. You are a strong stroke survivor! Happy Birthday Max! I hope you had an awesome birthday. Love a fan with CP.

    1. He is, indeed, one heck of a strong stroke survivor!

  5. Reading this blog I found a little of hope for my little girl of 10 days age who suffered an stroke during the labor. My wife and I are devastated and full of fears for the future of our princess. I hope Max continue to inspiring us everyday. Happy birthday 🎂

    1. Hello. I am sorry for the reason you found my blog, but I am glad this post give you a glimmer of hope. Please reach out to me for anything, I know what you are going through.


Thanks for sharing!