Monday, May 15, 2017

Raising children with special needs: there's no day off from worrying


Mother's Day brought some usual treats, along with unexpected ones. As I'd guessed, I could only sleep in till 8:00 a.m. but that still felt great. Dave got my favorite breakfast: bagels, cream cheese, lox and iced coffee.

Max gave me a mason jar terrarium he made at school. 

Sabrina gave me a sweet card, then a little later asked if I wanted the chocolate bar.

Dave snapped our annual porch steps pic 

Dave and the gang also gave me a big balloon and a Hallmark card with a "Mom Off Duty" button. I joked that I'd wear it next day, too. Several other moms I know got the same card and button. "Is it working for you?" I texted one friend. "Well, just opened the card after making lunch for everyone," she responded. 

I enjoyed a pretty chill day, complete with the usual jolts of worry. They are a standard part of my life; I was just more aware of them yesterday because I wasn't operating on my usual high speed. Like power surges, they flare up then recede. 

I watched Max grasp the rail of our front steps and struggle to walk up, and I worried that as he's getting bigger his weight is making it harder for him to move around.

I watched Max repeatedly try to pick up a set of car keys to hand to Dave, and I wondered if I will find a new OT to replace the one who's leaving us.

I listened to Max grappling to understand how to use his school word of the week in a sentence, and I worried about his developing cognition.

I watched Dave helping Max eat during our dinner out, and I worried about his evolving independence.

I sat in the quiet of our living room after everyone was asleep, scanning the happy photos on Facebook and the wistful messages from friends who have lost their moms. And I went to that scary place and wondered what Max will do when Dave and I are gone. 

And then, I did the only thing that could console me: I went upstairs to Max's room, cracked open his door, crept over to his bed and kissed and kissed his cheek as he lay sleeping. 

Mothers are never off duty, are we? It's just part of the gig. 

Good thing we have the best benefits of all.

4 comments:

  1. You have such a beautiful family. You should be immensely proud

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  2. Special needs or not, I don't think ANY mom ever gets a day off from worrying, it's part of being a parent! Happy Mother's Day!

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  3. You are so right - we don't get a day off! But who would want a day off when we get so much back overall! x

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Thanks for sharing!