An Open Letter to the U.S. Senate, June 29, 2025

This is an American success story.

The main concern in my 11 year old son’s life is dealing with his Minecraft mobs. He particularly likes the wardens. He talks about his plans for the game the same way that my husband and I talk about our jobs. “Ugh, I need to get home, I got a new mod and I have so much to do!” He is behind in math in his regular public school classroom and his tutor is coaching him to build out math equations in Minecraft-a genius move. He is headed to summer camp soon, a break from his video game world. Other interests in his life include strange animals, ghost stories, and Spiderman. This kid can light up a room with his huge smile, imaginative ideas, sensitivity, and a vocabulary that surprises us all the time. It is such a joy watching him grow and thrive. We don’t know exactly what his future will look like, but he is capable, kind, and determined.

Now, if you found this description of my son to be sweet but mundane, that is precisely the point. His ability to worry about regular kid stuff like Minecraft and summer camp is a direct result of the interventions of many support systems that have met his needs and allowed him to thrive. Let me explain what those support systems have meant for him.

Despite having good prenatal care and doing all the right things, my water broke at almost 20 weeks pregnant. He didn’t give up, so neither did I. I stayed on bed rest for 3 months and then gave birth prematurely. My son’s lungs were underdeveloped and he was rushed to the NICU. He had a surgery before I ever met him. He got wonderful care from the NICU team at Duke Children’s Hospital but it was a rough road. He needed another surgery to place a gtube for nutrition. On his first Christmas, the doctors told us that they didn’t expect him to survive and we prepared to say goodbye. Around February, he started improving and by March was strong enough to endure a surgery to place a trach.  At one year old, he graduated from the NICU to the regular pediatric wing and around that time saw the sun for the first time. He came home after a 15-month stay in the hospital. He never gave up, so neither did I.

While he was in the hospital, he got a little bit of funding from Social Security (SSI) and was covered through employer-sponsored insurance. Here is an important math fact. The cost of caring for this child from birth to getting him home from the hospital FAR exceeds the money that my husband and I will collectively earn throughout our entire (ongoing) working lives with good paying middle class jobs. Let the nuances of that fact settle. The way that our society chooses to solve this messy problem is the foundation of our values.

When he came home from the hospital, he required 24-hour care and monitoring for the next seven years. We had home health nurses in our home day and night. They went with him to school. Remember how I said that my son didn’t give up so neither did I? He was tethered to a very heavy ventilator from his trach, but it was our problem to engineer a series of carts because this kid was going to MOVE. He got a tricycle with a wagon for his vent through AMBUCS with Medicaid funding and a local church built a ramp on the front of our home. I did not understand the full landscape of joy until that kid drove his trike down the ramp for the first time at Evil Knieval speed with a smile that outshone the fireflies. Speed was his concern and the fact that he towed an extra 20 pounds of life-sustaining medical equipment was our problem.

Thank God and federal and state governments for Medicaid! When he came home from the hospital, he took 30 doses of medications per day. One of those meds cost more than a thousand dollars per month. At home, he qualified for the Cap/C Medicaid waiver. It waives our income and only considers his ($0) income to determine eligibility. This waiver was created so kids like him can grow up at home and in their communities instead of in a hospital or institution. As a bonus, this makes good financial sense! It’s cheaper to house children at home versus a hospital. My husband and I kept our jobs so we made money and maintained private insurance to support our family. We contributed to society through our work, charity, and taxes. Supporting people so that they can thrive is right and fiscally efficient!

My son gets all the regular-kid medical check-ups but also sees a large team of specialists. Medicaid covers medical appointments as a secondary payer after private insurance. We still meet our yearly out-of-pocket maximum every year, even on the more expensive plan. My son has had many hospitalizations and surgeries. Luckily, these days they are mostly planned and not emergencies. He came off the vent several years ago and got his trach out a year later. Then he got to swim for the first time. Now he calls himself a Master Swimmer while paddling around with a floatie. We’ll let him have that.

Before he was off the vent, congress considered removing aspects of the Affordable Care Act that are crucial to my family. What would my son do if he was kicked off insurance due to reaching a lifetime cap? Would someone come to our house and take away the expensive equipment that was keeping my preschooler alive? Would he be denied care because it cost more than we earned? I stayed up late watching C-SPAN and my body remembers the exhale that followed Senator McCain’s downward thumb vote. We poured all of our energy and resources into our family. In fact, home health nurse staffing is very inconsistent so there were months on end that my husband and I did the night nursing shift. We worked at our jobs all day. I would take a nap after dinner and then stay up from 9pm to 3am. He would get up at 3am and watch our son until the day nurse arrived at 7am and then get ready for work. Rinse, Repeat. I watched government at work that night (we had a nurse that night so I could have slept) because they were considering what would happen in my actual home. Similarly, I am writing this at 3am on the night that my Senator, Thom Tillis, stood up for the people of North Carolina—stood up for my 11 year old Minecraft-loving kid—because it will affect our lives now and my son’s future.

So I ask all of our Senators to consider these ideas and to align your words and actions with American values and interests:

—When healthcare costs exponentially more than someone has, how do we want to handle that as a society?

—Is it not better and fiscally sound to provide needed support systems for people to contribute in the ways that they can rather than unnecessarily institutionalize them or place even more grim restrictions?

My son has value. Those with less privileges or more limitations than him have value and inherent dignity too.

I promised you that this was an American success story. My son was not supposed to be born alive but he was. My son was not supposed to survive his first year but he did. He was not supposed to walk but he runs and jumps. He was not supposed to talk with a trach but he did and now he yells on the playground. He was not supposed to succeed in school but he made some As in his regular public school class this year. He was supposed to be a burden but he is a joy, a friend, an inventor, a thinker, a consoler, and he holds his own in Minecraft strategy and uncondoned punch-battles with his younger brother.

Why?

The center of the target that answers this question goes to my kid and his incredible joy and unabashed disregard for limitations. He has done all the regular kid stuff while managing incredible developmental delays and disabilities brought on by pregnancy complications and prematurity. Maybe he’s a little behind another kid in the race but that’s because he had to run five miles to their one.

I’m going to take the second concentric ring of the target for my husband and me and our sleepless nights, complex scheduling, emergency responses, advocacy, hours of paperwork, and, oh yeah, parenting. We have an incredible support system of family, co-workers, doctors and medical staff, schools and local community resources forming the concentric rings echoing outward. I acknowledge there are big privileges in access to these supports. The outer ring is not a fading ripple like the surface of a pond hit by a pebble. It is a fortress. A foundation that makes all of the inner rings possible. It creates the conditions and structures necessary for the other systems to create themselves, form a network, sustain, even thrive. Written on the wall of that fortress is “Medicaid” and this American success story is one in millions of personal stories that underpin the larger narrative of this successful government program. A program that we, the taxpayers, own and sustain as part of the social safety net that reflects our values and a government that works by and for the people. 

Now, explain to us, explain to my kid, why you want to take that away.