I don’t want to write about health care, yet, somehow, I have to…because I am the mother of a child who is medically-fragile. I am the mother of a child who relies on Medicaid and protections for people with pre-existing conditions. And right now? Right now I cannot afford not to write about it.
This week–after months of effort–my daughter and I met with our Congressman–John Faso, NY district #19. I’m not going to go into what an effort it was to get this meeting. Nor am I going to write about what I thought about it all…not yet.
But what I will do right now is share the statement I read to him:
I am here today to talk with you about my daughter, Esmé, and the impact that your recent vote on healthcare reform could have on her, our family, and others like us.
First let me give you some background.
I come from a good family—you know my stepfather. Your son has eaten dinner at my family home. I am well educated—Emma Willard, McGill University, and RPI for my PhD. I married an architect and engineer. He has a good job, good health insurance. We paid extra for the extra good health insurance since well before Esmé was born because it seemed like the smart thing to do. I was planning to be a university professor. I was planning that we would be a family who paid into a system and didn’t take out of it. And I was proud and happy to do that.
But then Esmé was born—and what we now know to be four genetic mutations dropped a bomb in all our plans. This kind of bomb is the kind that does not care how well educated you are, how good your job is, how much you’ve done right. This bomb came in the form of genetic mutations for us. Sometimes it is a car careening down the road. Or cancer cells. But I can tell you that I did not expect it. I did not ask for it. My daughter certainly did not deserve it—despite what some of your congressional colleagues have said about who does and doesn’t deserve pre-existing conditions. It was Esmé this time—but it could be your child, your grandchild. It still could be.
What does this bomb mean for us? It means my daughter almost died in my arms when she was three months old. It means I have held her through thousands of seizures in her short life, trying to tell her it will be okay, even though I do not know that it will be okay. It means my child will need help with everything that comes easily for you and me for the remainder of her life, which I pray will be longer than my own but know may not be. It means my daughter has twenty doctors and has spent months of her life in the hospital. It means I cannot hold the kind of job I trained for. It means that when we don’t have overnight nursing I sometimes need to pause before I walk into my daughter’s room in the morning because I am terrified she might have had a seizure in the night, that I will find her not breathing and cold. As some of my friends have found their children.
It means that I spend every single waking moment focusing on keeping her alive and safe and thriving. And I dream about it too.
What you did last week, how you voted—it was my nightmare.
You voted for $840 billion dollars in Medicaid cuts over ten years. Cuts that will directly affect the most vulnerable citizens—the 64 percent who are elderly, disabled, and children and take up 75 percent of Medicaid expenditures. This includes Esmé and the other 25,885 constituents in your district who are disabled and rely on Medicaid—the other 60,423 children in your district who rely on Medicaid.
Medicaid is already the leanest of health insurance providers—per capita costs are substantially lower than private insurance over the past decade and are rising more slowly. The cuts you voted for will come either in the form of removing high-cost individuals—like Esmé—from Medicaid waivers or in the form of cutting costs such as the hours of nursing care my daughter receives. They will cut the rates of pay for the people who care for her, many of whom can qualify for Medicaid on a forty-hour work week because the pay rates are so low. They will cut the equipment that gives mobility, safety, and health to children like mine. They will cut the support for special education and services in our schools, $4 billion of which comes from Medicaid. They will alter the way children’s hospitals provide care.
Disabled individuals of all income brackets rely on Medicaid waiver programs. They are essential safety net programs for families like mine who could easily be bankrupted by the extra medical costs not covered by insurance. They are critical for families like mine who cannot have two working parents and keep their child alive, who need to know that if my husband’s job disappears tomorrow, we will still have some way to keep Esmé safe. Medicaid keeps even a middle-class family in our situation like ours afloat, let alone those in far more dire financial situations.
Last week you voted quite plainly for a tax break for the wealthiest of our citizens. And you did so quickly enough that you were able to avoid speaking to your constituents at all. You could have addressed problems in the ACA without gutting Medicaid, without giving tax breaks to health insurance execs making $10 million a year, without throwing away the promises of protections for people with pre-existing conditions.
My daughter has fought for her life from her first breath. She has fought to move her body. To produce sounds. To breathe and swallow safely. She taught herself her colors and numbers as a toddler. She has taught herself to read at age four. She works like you cannot imagine every single day in the therapies she’s been in since she was two months old. It is one part miracle that she is alive, one part sheer determination on her part, and one part thanks to all those who work for her well-being. By all accounts my daughter should not have survived. If things in this world came to those who worked the hardest, my child would be queen of the free world. But life isn’t always fair. That is why those of us with power, with voices, with networks, with education—it is our job to be thoughtful and kind and compassionate toward those who, no matter how hard they try, will never be able to reach the place some of us, through sheer luck, start out from.
We all need to prioritize in life. What we prioritize says everything about who we are. I prioritize my daughter’s life—her actual life, her daily survival—over my career, over money, over being able to ever have a vacation, over having shiny new things, over my own ego, over the part of me that wants to sit here and tell you in no uncertain terms what I really think of what you’ve done as her representative rather than attempt to be polite. That tells you something about who I am, what I am about. What my life will be measured by.
With your vote you stated your priorities. You prioritized the wealthiest people in this country over the health, safety, and well-being of my child and children like her. And you did it surreptitiously. You did it despite the calls from your constituents begging you not to. You did it without waiting for information from the Congressional Office on Budget Priorities. You did it despite the clear majority of Americans who opposed the bill.
You’ve made it clear who you stand with. Who matters most to you. And it is absolutely not my child.
You are my representative. You are my child’s representative.
You seem to have forgotten that. And that is why I am here today.
This has been a Finish the Sentence Friday post. This week’s sentence, in honor of Mother’s Day in the US is “I don’t want to write about… ”
The host of Finish the Sentence Friday, as always, is Kristi from Finding Ninee.
You rock for getting that meeting and I love love love what you read to him. I look forward to hearing more about how it went, what he said (if anything) and whether you feel like he heard you in general. You’re fabulous. Truly.
Thank you Kristi! I’m really happy that it happened…thank you for the kind words. I’ll be updating more soon. XO
I love that you wrote that and met with him. I really want to hear about the aftermath!!
It was quite something to get to do. I was really happy that I was able to do it…able to bring Esmé. It was really something. The whole way there I was telling her about what we were doing and why it was so important.She’s been with me on state political stuff before–medical marijuana laws in NYS and Medicaid caregiver pay. But this felt different.
This was an incredibly powerful and moving message that needs to be publicized broadly! I admire you so much for your composure while driving home the point, it would have been hard for me to maintain that. You outclassed him a hundred fold, and I am hoping and praying that at least something you said left him unable to look himself in the mirror that night, and unable to sleep. I can assure you that there will come a time in a life when he will regret his choices, when he will understand what it’s really like to live in your situation or similar ones for so many. God has aa way of driving those lessons home. In the mean time I will be praying for you and your daughter, she is so blessed to have such a strong and determined mother who will fight with her and for her to the very end! <3
J’s Journal: Betrayal
Thank you for your kind words. I wasn’t totally composed…and knew I would struggle with that…so I needed to have it written down to read from, so I wouldn’t forget anything.
Love what you have to say here – absolutely perfect. This is such a difficult topic for so many people, for so many reasons. keep us posted!
Thank you Lisa! I will!
So powerful, Hillary – I’d love to know how he responded. It’s so easy for elected officials to view their constituents as faceless masses, but you forced him to look at your child and know that his decisions affect people’s lives.
Dana I will have some follow up on this soon, I hope. The meeting itself was fine, pleasant, even, at moments. Super weird at others…like when he drew me a “helpful” graph of Medicaid spending over ten years. Two lines, same slope…10% difference. Got it 🙂 The whole thing was rather surreal, I think. More soon. 🙂
So I used to think that having a special needs child was kind of an upper middle class luxury thing to do. Then we adopted our daughter who has many many needs and I actually met actual people and got an entirely different view of families of children with special needs. Most people who choose to give up their life to care for special children are NOT rolling in money, and many of them are actually in the lower income brackets. I absolutely want my tax dollars supporting their awesome efforts to give their kids a good life!
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