Seven years ago our daughter was born with a rare and severe genetic disorder. In that moment our lives changed in ways that we had never anticipated. Despite all that has happened since that moment, nothing could ever diminish the tremendous love we have for our daughter.
Furthermore, we believe that her life is a great inspiration to others. She is a light in the world who has to wake up and be brave every single morning just to get through the day. No one works harder to hold her head up, swallow, and be part of her family than she does.
That said, raising a child with a genetic disorder is without doubt one of the most emotionally and physically challenging—as well as costly—propositions anyone can undertake. The supplies, equipment, and therapies needed are simply not affordable.
For example, our daughter will be in diapers her entire life. She is fed through a G-tube daily, in need of physical, occupational and swallow therapy to keep her upright (otherwise, she would choke), and drinks formula that costs $50 per can every two days.
Even with these staggering expenses, we have been able to take care of our daughter thanks to the private insurance provided by our employer — and also because of the government program commonly known as Medicaid, which is often misunderstood and unjustly maligned.
I don’t begrudge any preconceived notions you may have about Medicaid, but I do ask you to try to put yourself in our shoes and in the shoes of many others for just a moment. We are not poor, we are not lazy, we have jobs, and we are not broken.
However, without Medicaid, we could not make ends meet. That’s what would make us poor and broken.
Currently Medicaid is underfunded, but if Congress authorizes the disastrous “skinny budget” proposed by our current president, Medicaid will be devastated. As a consequence, our daughter will become collateral damage. And she won’t be the only one.
No elected official on earth would tell me that he or she does not want to help my daughter. But at the same time, in an effort to dramatically cut taxes, it’s the poor and disabled, the invisible among us, who will suffer most.
Over the past seven years, I’ve met many of these people. For instance, I’ve been to funerals for children who were on Medicaid. Their parents weren’t lazy. On the contrary, they had been unable to work because their full-time jobs were taking care of their children.
Paying taxes into a program like Medicaid should not be seen as a burden. It is an insurance policy that we purchase in the event that we ourselves might need it one day. And let’s hope we never do, because watching a child suffer is unimaginably heartbreaking.
We have got to swing the pendulum back towards understanding that government can have value. We can’t cut and cut and cut and hope to maintain the services and security and relative stability of our country.
Let me hasten to add that I understand the value of smart finances. I myself love a balanced budget. But I also love human beings, more than ever now that I’ve had an opportunity to touch the hands of and hug so many people who benefit from our social safety net.
Political extremists on both sides need to meet in the middle, with collaboration across party lines in the name of reducing human suffering. Working together should be seen as a good thing, not an act of betrayal.
Admittedly, I would not be writing about this issue were it not for our daughter’s condition. I, too, might think that it was a program that only benefited other individuals. But we need to look people in the eye and hear their stories. We must listen rather than blame, comfort instead of criticize. Nobody’s child deserves anything less.
Cathy Stevens is the mother of Halle, a 7-year-old with mitochondrial disease. She lives in Greenville.