Monthly Archives: May 2017

To the ‘pro-life’ representatives who voted for the AHCA:

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This is my daughter:

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She doesn’t have a name yet, but her brother is already smitten with her. She appears to be healthy so far, and we’re hoping to meet her around Halloween.

This is my son:

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His name is Lucas. He loves fire trucks, Star Wars, and Neil Diamond. He just turned 4.

If you refuse to protect the life of my son as fervently as you would protect the life of my unborn daughter, you cannot claim to be pro-life.

You see, Lucas has a pre-existing condition. He happened to be born with gastroschisis – a randomly-occurring congenital condition that left a hole in his abdominal wall – and as a result he has short bowel syndrome. It cost more than $3 million to keep him alive in the first few months after he was born, and several hundred thousand more since then, thanks to 11 surgeries, daily at-home intravenous nutrition and tube feeds, home nursing care, frequent visits to medical specialists and various kinds of therapists, and so many hospital admissions that I’ve actually lost count.

You claim to be pro-life, and yet you have voted for a bill that would make it impossible for us to afford coverage for the medical care my son needs to stay alive.

Gastroschisis often results in a C-section in order to protect the baby’s organs during birth. You claim to be pro-life, and yet you have voted for a bill that would make mothers question whether they should have a medically necessary C-section and would threaten the future health of any mother who has had a C-section for any reason, because you’ve classified having had a C-section as a pre-existing condition that will price many families right out of the market.

You dangle the impossibly unrealistic carrot of “freedom of choice” in healthcare as though it were a pinnacle of American values, and yet you would force a woman to carry to term a child who is incompatible with life.

You claim to be pro-life, and yet you have voted for a bill that would make expectant mothers think long and hard at the end of the first trimester, when many congenital conditions are discovered, about whether they can afford to carry to term a life-long pre-existing condition. You have set parents up to make that decision based on their finances rather than their beliefs or prognoses.

You claim to be pro-life, and yet you would throw essential health benefits to the wind, leave 23 million more Americans uninsured, raise premiums for the elderly by as much as 800 percent, and cut $834 billion in Medicaid benefits for low-income Americans in order to give tax cuts to the wealthy. You did this without even caring enough to wait for the CBO’s assessment of the ramifications of the bill you have voted for.

You claim to be pro-life, and yet you have thrown the living to the wolves.

If you voted in favor of the AHCA, you are not pro-life.

Now that the CBO score has been released, the AHCA can pass on to the Senate. If you believe that people’s right to life should not depend on their wealth, call your senators and demand they vote no on the AHCA.

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Happy Birthday, L

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I’ve said before that while many parents think the early years fly by, for us it tends to feel like each year has lasted decades.

In those first hours and days and weeks we didn’t know what L’s future would look like or if he would have one at all, IMG_6713and yet now here he is today “my precious”ing his very own piece of cake (I guess when you’re allowed to have sugar for the first time after four years without any you kind of go Gollum) and laughing raucously as he makes his new Thomas Trackmaster Sky-High Bridge Jump hit him in the junk repeatedly. #miracles

It’s only been four years, but it takes an awfully long time to come as far as he has. His first birthday was really difficult for me, but I’ve come a long way since then too, and each year that difficulty fades a little more.

Happy Birthday, baby boy. IMG_6722

Number Two

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I’ve heard a lot of special needs parents say, “I’d do it all again.”

I had a hard time believing them in some of our early months. I knew with every fiber of my being that I would go to the ends of the earth for my son, and I have never once questioned whether L is worth everything we’ve gone through for him, but if I had a choice — would I choose to do it again?

That question certainly complicates the fact that I’ve never imagined myself as the mother of an only child. For the longest time, we had our hands so full keeping our first child alive that we couldn’t even contemplate the added responsibility of a second child. As things gradually grew easier, as we learned to better navigate this medical life, a brother or sister for L began to seem more attainable – but that choice was clouded with what-ifs. In theory, we have no increased risk with a second pregnancy because gastroschisis is spontaneous and randomly occurring; but our eyes have been opened to medical realities we had never imagined before L was born, both our own and those of others, and some far more intense and all-consuming than what our family has experienced. And we know better than to expect we will never have any more bumps in the road with L.

And so, contemplating number two, we found ourselves faced with the real-life version of what has been only a hypothetical before. We knew exactly how difficult it could be if an unexpected complication arose, and we perfectly understood the potential threat to the current balance in our lives — and this time we weighed all those overwhelming negatives with the very real possibility of opting out before we ever got started.

It was never a matter of whether or not we could handle it; we have learned all too sharply over the years that you handle what you are given, because what other choice do you have? No, the real question was: Did we want to?

After much soul-searching, lengthy debate, and repeated decisions to delay just a little longer, and a little longer, and a little longer still, we ultimately decided that we did not want to let our decisions be guided by fear.

Number Two is due Nov. 3.

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‘No parent should ever have to decide if they can afford to save their child’s life.”

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Jimmy Kimmel recently opened up about his newborn son’s unexpected open heart surgery, in an emotional, heartfelt monologue that touches upon the rawness and vulnerability of suddenly finding yourself in that terrifying situation as a parent. As I watched him struggle to give voice to their story so soon after it had happened, I was plunged back into the raw emotion of our own first week with L; and his takeaways resonate deeply:

“We were brought up to believe that we live in the greatest country in the world, but until a few years ago millions and millions of us had no access to health insurance at all…if you were born with congenital heart disease like my son was, there was a good chance you’d never be able to get health insurance because you had a pre-existing condition. You were born with a pre-existing condition and if your parents didn’t have medical insurance you might not live long enough to even get denied because of a pre-existing condition. If your baby is going to die and it doesn’t have to, it shouldn’t matter how much money you make.

“Whatever your party, whatever you believe, whoever you support, we need to make sure that the people who are supposed to represent us, people who are meeting about this right now in Washington, understand that very clearly.

“Let’s stop with the nonsense. This isn’t football. There are no teams. We are the team. It’s the United States. Don’t let their partisan squabbles divide us on something every decent person wants. We need to take care of each other.“

I’ve said it before, but it bears repeating: the current health care debate is everyone’s debate. If you think you are safe, consider what’s at stake. If you think it doesn’t apply to you, take a minute to understand the fundamental insurance principle of herd coverage. If you think a child’s right to life shouldn’t depend on her parent’s wealth, this debate is your debate.

IMG_6138Every single day, all across the nation, families face devastating news and difficult choices. And nearly all of these families face those choices with a tiny fraction of the resources available to the Kimmel family. Implementing a new and improved health care system is far from simple, and pleasing everyone is damn near impossible – but it’s not hard to determine right from wrong when it comes to such a fundamental issue. As Jimmy so simply and poignantly stated, “No parent should ever have to decide if they can afford to save their child’s life.”

The GOP’s first health care bill failed, but this battle is far from over. Keep making your voices heard.

Watch the full monologue here.

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