Tuesday, November 21, 2017

When you celebrate Thanksgiving 365 days a year

This weekend, Max went to an activity for the first time and when he came out he announced, "It was very good! Next week?" (Meaning: "Can I go back next week?") The second he said it, I felt a rush of gratitude—both because he'd articulated that, and because he'd enjoyed himself. For years, he was adverse to trying new activities.

These moments of thankfulness happen every day, usually surrounding something seemingly small: Max picks up a spoon off the floor. Max types something amusing on his iPad. Max looks up the weather and lets me know. Max gets into the car on his own. Max closes a drawer. Max brushes his hair. This boy is, obviously, just living his best life. But as his mom, I take none of it for granted. How could I? I know exactly where he's been—and how far he's come.

I'm thankful year-round because...

I know how dire this boy’s situation was at birth.
Once you've had a child in the NICU, there is forever a part of you that's grateful he made it home.

I know what my heart endured.
There's also a part of you that will never forget any of that time in the NICU—20,160 minutes when the joyous dreams I’d had about the birth of my first child morphed into a nightmare. And then, encouraged by his progress and my own development as a parent, my heart healed.

I know all the doom-and-gloom predictions that didn't come true. 
Max walks. He communicates in a variety of ways. He can see and hear fine. He is bright. Yes, he has cerebral palsy, with movement and speech challenges. Yes, he has intellectual disability. They are part of one amazing package. Those NICU doctors couldn't have predicted Max's sweet, sunny, funny personality, and the joy he brings to those who know him.

I know just how much effort has gone into his accomplishments.
Max's persistence and determination, the support he gets from his teachers and therapists, the help from me and Dave—not much happens without concerted effort. I am thankful for the continued wins, the sparkly new ones, the ones he's working on, and the ones I haven't stopped hoping for.

I know that the inchstones are milestones.
I'm part of a Facebook group for mothers of children with disabilities that's filled with advice, virtual fist bumps and daily celebrations: a child with sensory issueus wears jeans for the first time, a child with autism invites her mom to pretend play, a child grins into the camera on school picture day: They're little things, but of course they're b-i-g.

I know that some people see only my son’s disabilities...
...but I see all the abilities.

I know that he has expanded my perspective and basically my entire world.
If it weren’t for Max, I might have never fully understood the glorious spectrum of humanity, that “perfect” comes in many forms and that “different” can be a good thing.

I know the history.
Every walk down our front steps encompasses the years when Max couldn't do stairs. Every word he types on his iPad incorporates the years when he wasn't able to isolate his pointer finger or let us know what was on his mind. Every "I love you" from Max contains thousands of unspoken "I love you's" that I yearned for when he was a tot.

I know that he is the child...
...I never dreamed of. He is so much more.

I hold all this in my head and in my heart, and I am so thankful.

This is not to say I have my gratitude glasses on 24/7. Yeah, NO. Dealing with the insurance company about Max's therapies regularly makes me a Scrooge. Pushing to get him included in programs or activities wears me out at times. Having stand-offs with him as he articulates words and refuses to use his speech app because he wants me to understand him, even though I don't, is hard on both of us. Juggling the therapy, doctor and specialist appointments is a lot. Anxiety about his future has me lying awake at night.

But then: when Max says or does something for the first time, or it randomly occurs to me how awesome it is that he can do something even if he's been doing it for a while, or when I happen to glance at a photo on the bookshelf in our living room of Dave holding Max when he came home from the hospital, or when the NICU days come rushing back to me triggered by a smell in a doctor's office or the sight of a baby on Facebook, or when I see Max lending his little brother a hand, or when I hear Nora Jones's Come Away With Me—her CD came out around when Max was born—and I flash back to crying in the car with it on as I drove Max to doctors and I realize how far we've both come, or when Max gives me a hug and I feel the warmth of his body, I am thankful. Every. Single. Day.


  1. I agree. He is an awesome kid and someone to truly be thankful for every day of the year!!!

  2. This is beautiful. You and Max have taught me a lot about the true definition of thriving and also about being thankful for every day. Have a wonderful Thanksgiving!! ❤️❤️❤️

  3. I love this post so much! It's so raw and true on so many levels. Hope you guys had an amazing holiday.



Thanks for sharing!

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