Thursday, September 7, 2017

I wish I'd known back then that he'd be OK: Hello, high school


Sabrina started seventh grade Tuesday. Ben headed to Tots Class yesterday. Max starts high school today, which boggles my mind. As is always the case with milestone events, one thing keeps running through my head: I wish I'd known back then that he'd be OK. 

Those weeks Max was in the NICU are forever seared into my head and heart, the memories as raw and immediate as if he had been born last year: Your baby has had a stroke. It's a large one. You could sign a Do Not Resuscitate. He may not walk or talk. He could have vision and hearing problems. He could be cognitively impaired.  

The lead pediatric neurologist was The Grim Reaper of the NICU. He gave me and Dave no hope, only its opposite. We took Max home determined to do what we could to help him but full of anxiety and despair. 

"He'll be fine!" a friend reassured me at his baby naming. "Look at him!" I winced. Yes, Max looked like any other baby. But his brain was not OK. The signs of cerebral palsy emerged in the months that followed: clenched fists, spastic limbs and primitive reflexes that lasted long past infancy. He had a hard time focusing his eyes. I lived in dread of the speech and cognitive issues. I analyzed his every move. I felt grateful for the inchstones, even as I mourned the missed milestones.

I wish I'd known that Max would be fine. Not my original idea of what "fine" meant for a child, but a newly reconfigured version in which I grew to understand that Max's disabilities were one part of who he was, not all of him—and that he had plenty of abilities.  

I'd be fine, too, that parent who used to sob in the car as she drove her infant to therapy and specialist appointments and sometimes had to pull over because she was crying so hard. The new mom who in her darkest hour blurted to The Grim Reaper, "I don't want a handicapped child"—how was that me? I cringe now. Society does not set us up to think positively of disabilities.  

As Max grew up and progressed, on his own timeline, the dread I'd once felt about his future dissipated. There was no other child I wished for. I'd lucked out with him, this good-natured, cheerful, charming, mop-topped boy who beamed brightness into the lives of everyone who knew him. He figures out how to do things his way. Or he doesn't do them, and that's just the way it is. He has his strengths and challenges, same as any other human. I love him with every inch of my being and at times he drives me up a wall, same as my other kids. 

This week, I've been enjoying all the back-to-school photos of my friends' children on Facebook. Years ago, I used to compare Max to typically-developing kids his age and feel sad. This morning, I snapped his photo on the porch before he got on the bus. He looked just as amazing as any of them...and ready to kick butt in high school.

8 comments:

  1. This is great. Your trajectory as a parent of a child with CP from despair to acceptance (and joy, total love and optimism!) really resonates. Thank you.

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  2. I hope Max enjoys high school as much as my Luke is (he started on August 9!). Tomorrow night he (and I) will be meeting up with new friends for the football game.

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  3. Happy 1st day of high school Max!

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  4. I wanted to call him adorable, and, certainly, that baby picture is nothing but (do you have Ben in that outfit, as well). But the teen, starting high school, what a resilient and handsome young man!

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  5. Happy first day of high school Max! I'm sure you nailed it!

    Paige
    http://thehappyflammily.com

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  6. I wonder what Max got up to in school today with his friends and teachers.

    The school he wanted and wants to go to.

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  7. Love every part of this! It spoke directly to me and I'm crying thankful tears. Thank you for being so honest!

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Thanks for sharing!



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