I would prefer to take a break from thinking about Trump, McConnell, Ryan and the rest of the DeathCare supporters, especially the ones who think their death-dealing tax bill doesn’t go nearly far enough.
We all now know what is in the Trump/GOP DeathCare Bill. Huge cuts to Medicaid, the elimination of ACA protections for those with pre-existing health issues, defunding Planned Parenthood, the reinstatement of lifetime caps, etc, all to fund a gigantic tax cut for the wealthy.
The cruelty and greed at the heart of the GOP’s DeathCare Bill is obvious to anyone who gives a damn.
That Trump and Republican members of Congress don’t give a damn about the disabled, those with pre-existing conditions, the poor, or the struggling middle class, has also been blatantly obvious to those with eyes to see.
That cruelty, that lack of care, is an on-going feature, not a bug.
But this is where we are this June in America. Lives are on the line as they always have been. My son’s is one of them and he is far from alone.
A wonderful mother took to twitter to defend her child’s life, to make him real to those who refuse to see him as a valuable, loved human being deserving of health care. Walter Einenkel wrote a diary about that warrior mom, her much loved little boy, Ethan, and her fight for his life.
It should be shared everywhere. It should be mandatory reading in the Senate and House, not that I believe it would change the morally bankrupt.
But it should affect the rest of us.
It certainly affected me, conjuring up the four decades of my son’s fight for life.
Like Ethan’s Mom, I too had a little boy, the delight of my heart, who was in and out of hospitals due to rare health issues. When I read Walter’s post, I learned that Ethan and my son shared the same hospital. Like Ethan, my little boy had brown eyes and hair, and a smile that would light up the world - he still does. Ethan’s Mom and I also share receiving multiple five figure hospital bills. We both have multi million dollar babies. We both have children who will always need medical care.
There are differences of course. My child was in and out of hospitals before the world wide web and home computers. We were much more isolated, something I’m deeply thankful Ethan and his Mom do not have to experience. They have a community of support that could not have existed decades ago.
And that is crucial. No one can go through such things alone. That isolation affected how my son and I still deal with things. It left scars. So have GOP policies. And those policies have only gotten worse. There is nothing subtle about what Trump and the GOP are doing. They’re dealing away our children’s lives for tax breaks.
So here I am. Instead of finding some rare peace on a beautiful Saturday, I am compelled to write about my son and his four- decades- long fight for life. I hadn’t planned on writing about being his Mom and the fight for his life, but some things are morally necessary. The fact is I could write a book. Condensing forty years of life down to a blog post is not possible.
But I want the people of America who think they are somehow magically immune to such things to wake up — because they definitely are not immune from life’s vagaries. In spite of what too many believe, they can do everything “right” and still have medical problems completely reshape their lives — physically, mentally, and financially, along with their relationships.
So this writing about my son’s struggles, his courage and fears, his joys and sorrows, how all his life has been shaped by uncertainty and the knowledge that his health issues are forever, is a warning, a call to, please god, wake up and pay attention! I don’t want what happened to us to happen to anyone.
I write because I don’t want anyone to lose their healthcare. I don’t want crushing medical bills to bankrupt any family. There is more than enough fear and uncertainty when a loved one is struggling with health issues. No one needs or deserves preventable stressors piled on top of the rest.
And if people refuse to wake up, I am most certainly not going to allow them to continue to put my son’s life and the lives of millions at risk.
In spite of everything life has thrown at him, my son has never stopped fighting to go on, to somehow make a difference. His Mom isn’t giving up either. So I write.
I write because little Ethan, my son, and so many others need and deserve to be recognized for the loved and valuable human beings that they are.
Even as a little boy, my son wanted to be a Doctor or a Nurse so he could help other people. Well, years later he is doing just that, helping people. He graduated from Nursing School two years ago. He’s an RN, a nurse who eases patients’ fears and suffering, including those who no doubt voted for the man who would sign a bill that would put my son’s life even more at risk.
My son is brilliant, funny, has a keen photographer’s eye, and a cadre of loyal friends. He loves the ocean, music, sports, cats, and dogs. He’s also six feet four inches tall. Something that never ceases to amaze me when I remember how small he was when he was born. I remember his eyes as he took in the strange, cold, world he had been suddenly thrust into.
I remember holding my first born, the wonder of him. I remember our Pediatrician coming in to my hospital room to stand at the foot of the bed and tell me there was something wrong with my baby. Thus began a decades long journey of fear, hope, sorrow and delight.
I remember all of it. The last forty-and-a-half years since he was born. I remember the first surgery and the last. The most recent was last year to remove a malignant cancerous tumor. I remember all the procedures in between.
I remember all the efforts to somehow make life normal for him, in spite of a society, including friends, classmates, and teachers, who could not or would not comprehend what my boy was dealing with. I remember the bullying and isolation. I remember how my seven-year-old son came into the house one summer day, sat down on the floor and said in quiet despair, “It’s always going to be like this. It’s never going to get better.” I remember desperately searching for words that would give him hope to cling to. I remember my heart repeatedly breaking for him and being powerless to prevent more hurt from coming, including from our own government.
My son has his own memories, including Newt Gingrich’s “Contract for America.”
When he was a teenager, he walked into the house one day with the most devastated look on his face. It stopped me cold and I asked him what was wrong. He said — “Mom, I just heard Gingrich explain his “Contract for America” on the car radio.” He paused for a moment, collecting himself and then said — “There is no place in his America for me.” He was shattered, frightened, and right.
The GOP has been abandoning and betraying my son for decades. So have far too many of his fellow Americans. And one of the ironies is that what the doctors learn with patients like Ethan, my son, and others, is how to help other patients. Our loved ones on the cutting edge of medicine have helped save lives. Ethan’s and my son’s pain and suffering has helped spare others more of the same. And yet the GOP does not see our children as having worth. If that doesn’t leave irony dead I don’t know what will, except for perhaps this.
One of the things I know for certain is that Trump, GOP Senators and Representatives, and those who support them and this Death-dealing abomination of a tax cut, would not last ten minutes in my child’s shoes.
They wouldn’t last ten minutes in mine, or those of any other parent of a child struggling with health issues.
My son’s health issues are for forever. They are issues which could take his life at any time.
And yet he goes on. We go on.
He has more courage and caring in his small toe nail than DeathCare supporters could begin to imagine. In his own quiet way, my son is a true hero. So are little Ethan, his Mom, and so many others. They embody a courage the GOP refuses to understand. They’re afraid to for it would upend their ideology and worldview.
The GOP is filled with craven cowards who delight in cruelty, the kind of people who would relish pulling off butterflies’ wings. People like that are not to be trusted anywhere near our children’s lives.
Apparently it is little Ethan’s and my son’s lack of “personal responsibility” that caused them to be born with life threatening forever health issues. Though I do wonder if perhaps my son’s Dad and I should have ended the Vietnam War before it got going. You see, there is a good chance that my son’s health issues are connected to his Dad’s tour of duty in Nam and exposure to Agent Orange. So perhaps my husband and I failed to live up to our personal responsibility to eliminate the draft, stop the Vietnam War from beginning, and, oh yes, prevent Agent Orange from being invented.
Yes, I’m trying for some snark here on where “personal responsibility” would belong in Pence’s and the GOP’s eyes, but it is difficult as I’ve never been a fan of victim blaming. And don’t even get me going on the GOP’s mythic “free market competition and state based reform.” We all know what that means — Kansas writ large.
Needless to say, one of the other things I know for certain is that I will not allow the DeathCare Bill enablers the final say over my son’s life or those of millions.
So I write, in spite of the pain and sorrow it can all conjure up. I write, because of the pain and sorrow it can all conjure up in hope that Ethan’s mom’s voice is heard and that her brave little boy is seen and valued. I write in hope that my voice is heard, that my amazing son is seen and valued. I write for I know that our sons are but two of the many whose lives are very much on the line.
Our hearts are on the line. Our children are on the line. Everything is on the line this June in 2017
Who will live or die?
Who will stand for what is right? Who will stand with Ethan, his mom, my son, and so many like them?
Because I tell you what, if you thought protestors standing down tanks were something, you haven’t seen anything yet if you keep coming after the ones we love. And that’s not a threat. It’s a promise.