11.18.2011

margarita mamas on mars

There’s few things better than sitting on a red vinyl and chrome stool—Danny behind the bar crafting grapefruit margaritas—with a couple of chicks over a platter of nachos at the local Mexican hangout.

It all started with Calvin ... and Ellis. Ellis is one of Calvin’s classmates in his first grade mainstream homeroom. I’d met her at school and then again while out for sushi with my in-laws. She’d introduced me to her mom then, who seemed nice enough.

Wednesday, I woke up feeling better than the day before, which wasn’t hard, having cried a lot over an unhappy, sick child who, of late—likely due to his high doses of seizure drugs—isn’t much interested in eating. I’d spent some time staring off into a blurry space wondering where it all went so wrong, what I might have done during my pregnancy to have hurt my baby’s brain and feeling guilty for being frustrated, angry and impatient with my sweet, innocent, good child’s inability to stand upright and walk by himself without falling. And then I get this email ... this email from Ellis’ mom in which the first line reads, “ellis wants to have a play date with calvin.”

As it happens Calvin had his first play date yesterday. I invited over my new friend Sarah and her boy Jacob who shares some things in common with Calvin—his wordlessness, his innocence, his inability to walk unassisted, his slow development, his delicious cuteness. But if memory serves me, Calvin has never been invited on a play date before. Ever. I reread the email to Michael and wept.

Later, as I was taking a shower, the phone rang. I played back the message of an unfamiliar, husky female voice announcing, humorously, that she felt a bit like a stalker calling me. It was Kim, Ellis’ mom. She mentioned she was heading out later for some impromptu margaritas with a couple of friends who she thought I might like (she’s been reading the blog religiously so knows me to some extent) and would I like to join?

So while Michael was home trying, mostly unsuccessfully, to get Calvin to eat something, Mama was out getting a buzz with a basket of chips under low lights amongst happy faces, some familiar, some not.

The three of us gals talked about a whole range of things from chocolate milk, to our kids, to the wall of shame in our kid's cafeteria. From the importance of educating children about different kinds of families (ones with two moms or two dads, no dads and the like) to beans and pregnancy. We even talked about a grandma trapped in a small closet with a raging electric floor sander. You name it—we just about covered it. I made some new friends, broadened my horizons, and ate some pretty kickin' nachos, ta boot.

With an icy cold glass in her hand, Kim told me that now, after having read much of Calvin's Story, when her kids get out the scissors and a ream of paper and proceed to cut it to shreds, into billions of tiny pieces, instead of getting perturbed thinking I have to clean this mess up, she stops herself and thinks I GET to clean mess this up. When I heard her say this, looking into her clear dark eyes, her smooth, perfect complexion in no way reflecting her forty-five years, my heart swelled. She gets it, I thought to myself, and smiled, she appreciates what Calvin and I are missing and she's bold enough to risk saying it.

I remember telling other moms about my child whose brain wasn't complete, who cried incessantly, my child who couldn't crawl, couldn't sit up, didn't want to eat, who was missing all sorts of milestones, whose future was dim at best, and some would say, “welcome to motherhood.” When I told them that my son couldn't walk some said, “be thankful, because once he starts walking you'll never get to relax,” and when I told them about my toddler who seized, had to take medicines and whose speech wasn't emerging some said, “well, when he does start talking you'll be wishing he'd shut up.” It seemed they were trying to level the playing field, to include me in the shared sport of motherhood. I understood that. But what they didn't realize was that, in my humble opinion, we were playing different sports. And even though all mothers have immense challenges, it still seemed to me at the time that they were lawn bowling on some very tidy green with, perhaps, grass stains on their knees while I was sweating in some boxing ring, being thrown against the ropes, getting roughed up and bloodied, sucker punched, knocked down and stomped on all by my little defenseless, drugged up kid and his relentless seizures.

Not long after Calvin was born a friend sent me a story called Welcome to Holland, in which the author attempts to describe what it is like raising a disabled child. She compared it to planning a vacation to Italy only to be rerouted to Holland. I never liked that story and thought, if I had written it, I might describe raising a disabled child like planning a trip to Italy but ending up in a war zone or perhaps even on Mars, which is where it feels I live much of the time.

But fortunately, in my travels through life with a sick, disabled child, I've met several moms, some with disabled kids of their own, some not, who'd gladly travel to Mars with me, who've maybe been there before, and who sometimes, I think, perhaps even came from there, like I think I did.

Good thing here on Mars I can still get Danny to make me a galumptious grapefruit margarita that is simply out of this world, and takes me there.

Please take this opportunity to share Calvin's Story in honor of epilepsy awareness month. It's as easy as pushing a button.

Calvin, Rudy and Jacob

6 comments:

  1. You have described as no one has before the role, the challenge, the pain and joy, the feelings--both rotgut and peaceful--of having a child who lives such a broken life. I get it. I see and understand, if it is possible for another to understand, the package of love and despair, the combination of anger and delight that comprises being Calvin's mother. Thank you for sharing such important insights.....We readers (and I'm sure I speak for many of them) love you.

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  2. thank you for your kind and loving sentiments, carol. they mean the world. xo

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  3. Christine CarrollJuly 5, 2012 at 1:25 PM

    This is the very best description of mothering a child with a disability...thank you for putting into words what is in our hearts. Thank you for your authenticity and vulnerability. It is refreshing! ~Christine

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  4. my complete pleasure, christine. xo

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  5. I detest the Welcome To Holland story too. My sister, who died of kidney disease aged 32, had severe learning and physical disabilities. I am really enjoying reading your blog, although I often have a lump in my throat when I read it.

    Having a child with health problems and/or disabilities is NOTHING like walking off a plane and finding that, instead of pizzas and Tuscan vistas, you are on a jolly holiday in the land of tulips and windmills.

    I love the pictures of Calvin - especially the one of him in his graduation gown.

    PS - you can read about my lovely sister, Alice, on my website. Link below.

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  6. i do not see a link to your website.

    thank you for reaching out. i love to hear from readers!!! if you are on facebook and would like to share calvin's story that way, please friend me.

    take care,
    christy

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