Remember This Face

 

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(Photos courtesy Christine)

I need you to look at this picture. I need you to read these words.

 

This is Ethan. He’s the son of a dear friend of mine, Christine. Christine and I became friends in the most modern way – a BabyCenter birth group. Christine has four children. Her third, a daughter, is Tiny’s age.

A group of about 20 of us in this BabyCenter group ended up hitting it off and soon migrated to Facebook, where we kept in touch with each other daily – and still do. We’ve seen – and loved – each other through miscarriages, divorces, more babies, marriages, significant health scares and more.

We’ve fought like kin and made up like sisters, and we’d pretty much high five you in the face with a rusted folding chair if you tried to mess with one of us.

But today I want to tell you about Ethan, who is the person I picture when I close my eyes and think about this health care debate that’s being waged these days. It’s who I thought of yesterday when I watched John McCain waltz in, vote to begin the proceedings that would affect Ethan most, and then lecture everyone on working together.

Ethan was born six weeks early, with a two and a half pound sacrococcygeal teratoma growing out of his tailbone. “His pelvic organs were destroyed, his left leg and foot were mutilated from his gestation, and the experts told us that our son would be paralyzed anywhere from the chest to the hips, down through his feet, for the rest of his life,” his father, Matt, wrote.

Matt outlines all of the challenges and the SIX surgeries it took to put Ethan back together again. And I can tell you from this end, it was harrowing. So many times we came close to the worst outcome for Ethan, and he rallied.

This boy has no quit in him.

But understandably, Matt and Christine were looking at about $1.2 million in bills. Their private insurance would only cover $500,000.

“But I do know this — Ethan, because of his long NICU stay, and because of his disability, ended up qualifying for Medicaid,” Matt said. “Medicaid paid the rest of the bill.”

“And Ethan only qualified for the disability part of Medicaid because of the expansion of Medicaid in Colorado under the Affordable Care Act (ACA).”

And now we follow Ethan’s amazing and miraculous progress – a boy who they thought would never walk, would probably need to have an amputation, is walking upright on two legs.

But even with that progress, Ethan is medically fragile. He suffers from seizures. A bug that might lay the regular kid out for a few days and require some popsicles and hugs can do real harm to him.

And because doctors had to reconstruct his pelvic area because of the damage wrought by the tumor, Ethan’s colostomy supplies run about $20,000 a month – something Matt and Christine will have to cover if the ACA is repealed.

Do most people have an extra $20,000 a month sitting around? Because I don’t. You probably don’t either. But the GOP thinks you do, and if you don’t and you need these kinds of perpetual care items, you’re probably just going to have to die.

I know some lawmakers have said people should just get jobs for these kinds of things, but does anybody know where a disabled preschooler with a seizure disorder and a history of cancer can find employment?

Are we sure they’re the party of pro-life?

Again, this is Ethan. I want you to sear his gorgeous eyes into your brain, and think of him when you call your senators and congressmen. I want you to forward this post to them. Share the crap out of it.

Ethan’s come way too far to be ignored – by me, by you, or by Washington. Make them listen.

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