Amy Whipple, left, of Carnegie, cuddles with her son, WD, 10, as they read together at the Sewickley facility where he lives, on Tuesday, April 15, 2025. (Photo by Stephanie Strasburg/PublicSource)
When I could no longer meet my son’s complex medical needs at home, I found a new way to keep my promise to him. Medicaid made it possible — and remains essential.
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On my first night alone, I deleted alarms for my then-10-year-old son from my phone: five for running his feeding tube, one for picking him up from daycare, one for stopping his pump at midnight before anesthesia. In doing so, I removed the scaffolding that held my days in place for nine years.
WD’s medications remained lined up on the kitchen island, discarded one by one as they passed their use-by date, cases of formula stacked under the sink, feeding tube bags crammed in the cabinet above it, packages of diapers teetering in his closet.
Nine years prior to that night, I brought 10-month-old WD home from Children’s Hospital as a foster baby. I became a foster parent because I believed — still believe — the adage that it takes a village, and I wanted to be part of the village.
I need to say something explicitly before we continue: this essay is not about disability and/or caretaking as a burden. It is, rather, about what it means to truly provide for children — our own, each other’s — and about wanting them to have everything they need to be their fullest, most wonderful selves. To care for them when those needs go beyond what the sheer stubborn strength of our love can offer.
When I first met WD, no one knew what the future would hold. A neurology fellow said it was anyone’s guess how his medical conditions — cerebral palsy, epilepsy and cortical visual impairment — would progress and the skills he would or would not attain. WD’s neurosurgeon said, in no uncertain terms, that anything less than 100% compliance and vigilance could result in his death.
So I gave him his medicine and took him to his appointments and attended to his various therapies and tracked everything: seizures, bowel movements, reflux spit up/vomiting, sleep and illness. I took him to the ER when required and learned how to use a feeding tube when he acquired one four months into our knowing one another.
I spoke often about how none of this would be possible without Medicaid and the other social services that buoyed his care. In 2017, it cost around $800 a day to be WD.
With that support, we were able to have fun. So much fun. When he was 3, we moved into an apartment designed for a wheelchair user. We could walk half a mile to Arsenal Park on the weekends where he would smile and laugh and get everyone’s attention while on the wheelchair swing. In our wide-open kitchen, he would dance and spin around in his gait trainer and delight at the sensation of banging into the walls (whoops). In the evenings, we’d sit on the living room floor, and he would play with his toys. I saw those moments for what they were: a time of relatively quiet togetherness that I told my spiritual advisor sometimes felt like a miniature Sabbath.
The joys and challenges of our life together
Over the next several years, WD thrived in school and found a loving community in church. He learned how to take halting steps across the apartment while I held his hands above his head. He could sign “Mama” and raise his hand to claim the drum for circle time in preschool and say “yeah” when his speech therapist told him he was looking good. He preferred savory tastes like pot roast gravy wiped along his bottom lip but also almost always smiled for whipped cream, too.
I assumed he would keep growing along these lines and that, when he was done with school at 21, he would move into some kind of residential community where he could continue to be his social butterfly self. People started asking when he was about 2 what my plan was when I couldn’t carry him anymore. The idea seemed so far away even though he’s big for his age, and I’m not. But I knew I would figure it out when the time came because I always figure it out.
Alongside his growth, WD’s annual seizure count exploded: He went from 72 in 2019 to 198 in 2020, then 586, 615, and closed out 2023 with 878. Somewhere around his seventh birthday, he stopped being able to lift his arm up and around to hug or raise his hand. The next year, he stopped shaking his head no and saying “yeah.” Other little skills dropped off along the way, too.
When milestones stop and losses accumulate
In the spring of 2023, WD stopped sitting independently. At first, I didn’t worry too much. He’d had occasional “sitting strikes,” which his doctors and I assumed to be a bid for control that would resolve in a couple of months. But a couple of months came and went and, by the fall, I had to admit that sitting wasn’t coming back. With it went helping to hold himself up while I changed his shirt or lifted him out of his bed. He also stopped bearing weight in his legs, making it difficult to transfer him out of his gait trainer or into the car.
WD had always slept 12 hours a night. But then he started sleeping through more and more of the day, whether at home or school or his baseball games, which otherwise thrilled him. On other days, his eyes were open, but his head was down, and his dimple smile and joyful noises were nowhere to be seen or heard.
It seemed like the more WD slept, the more exhausted I got. What started out as a one-hour-at-most morning process between the two of us had slowly turned into two, a fact I struggled to incorporate, making us habitually late. Leaving his room each night, I felt like I had stumbled across a finish line of some kind. On the days he slept more than he was awake, or through the nights that were filled with seizures, I got trapped in fear about all of the kids we knew who had died and if WD had reached his peak and was now on his descent.
At some point in all of this, my now-wife C insisted that it was time to accept home health services. I knew from other parents at daycare that, even prior to the pandemic, it was hard to fill nursing shifts. I thought, though, that maybe we could be the exception. However, even with the additional help of WD’s care coordinator and the state’s post-adoption services, I never received even a single phone call. Later, I learned that home health care workers in Pennsylvania make, on average, $5 less per hour than in surrounding states, which explained a lot.
In my phone’s silence, C brought up residential care, which I fully did not want to hear. “Waiting for something bad to happen isn’t a plan,” she said. When I relayed all of this to my sister, who is a hospice social worker, she said, “If I had a dollar for every time I told a patient’s caregiver that …”
My anger at them for being right was stunning.
Facing what I didn’t want to hear
In January 2024, I messaged a friend whose son has similar needs to WD and moved into residential care around the same age. I asked what residential care was like. “It wasn’t perfect because it wasn’t home,” she replied. “I have to remind myself that home isn’t always perfect.”
There isn’t a day that has gone by where those words haven’t come to mind.
I went back to a tab I had opened a few days before and impulsively sent an inquiry.
A social worker called the next day.
At Verland, an intermediate care facility (I hate the word “facility”), WD would be one of 94 people living on their main campus. “You’re going to live in a house with other kids!” By chance, his roommate was one of his classmates, and I used that to try to sell the situation, too. WD would receive around-the-clock nursing care and therapies as well as programming when school was out of session. If everything worked out, he could live there for the rest of his life.
Finding a new home and a new village
As with life at home, life at Verland relies on Medicaid. In 2024, the government provided $30,110,748 of the organization’s $31,390,715 in revenue, which supports people with varying degrees of need across varying types of living arrangements aside from the main campus, all of whom would suffer at the hands of federal cuts.
After WD spent a two-month interim at The Children’s Home, move-in day at Verland arrived.
On move-in day, WD and I first had assessments (him), paperwork (me) and a 40-minute fire safety video (him and, by extension, me). One of the dozen or so staff members involved that day asked about his likes (jazz music, gossip, reading) and dislikes (having his ears checked, the dentist, fools). They read off the list of his toiletries and wrote an order for each part of his day as well as a list of things for which he’d need to be further assessed, like his shower chair and a recliner in the living room.
Six hours later, we drove up the hill to WD’s new house. I unloaded boxes of his clothes and his favorite toys and the cases of formula, feeding tube bags, diapers and the few bottles of medicine. I unpacked his clothes into his new dresser and placed the toys along the deep window ledge.
Everyone at the house was so friendly and welcoming and immediately taken by WD’s charm. My whole insides screamed, though, wanting for us to be left alone. I wanted to cuddle with him and read another chapter from the book we were on. Anything, really, other than this.
WD leaving our apartment meant that I had to leave our apartment, too, because it was tied through the Housing Authority to his needs. Packing the remainder of his toys — a fair amount of which should have been donated years earlier — hurt in a way no physical pain ever has. I sobbed on the living room floor and felt what seemed like a primal need for my own mom, who was 260 miles away.
He’s still here, he’s still here, he’s still here, I chanted to myself because, for as excruciating as this was, I knew that it could be so much worse.
I couldn’t deal with any of it. Nor could I deal with telling most people what was happening. It seemed like an act of ingratitude to tell the people from church who had been so supportive of us in so many ways. It seemed monstrously shameful to tell his birth family. Who promises, in a court of law, to care for a toddler for the rest of his life and then doesn’t? It didn’t matter how many people told me that making sure he had the level of care he needed to be healthy and safe was, in fact, in keeping with that promise. I couldn’t — still sometimes can’t — hear them.
Medicaid’s crucial role — and a looming threat
One of the only things worse than not being able to care for WD would be to not be able to care for him and not have the resources to arrange for otherwise.
In Congress’ budget debates over the past couple months, a perpetual assurance that they will protect Medicaid appears more specious than usual. The GOP desires a $1.5 trillion reduction in general spending over the next 10 years — $880 billion of which has been asked of the area of the budget that is dominated by Medicaid.
Medicaid accounted for $871.7 billion of spending in 2023. A reduction in federal money would shift responsibility to individual states, who currently cover about half of costs. In our Congressional district alone, WD is one of some 130,000 people covered by Medicaid. The idea of potentially hurting the lives of “just” that many people is so horrible as to almost be unimaginable. Across the United States are over 70 million more.
Recently, Verland’s monthly family support group meetings have been laced with worry. They are filled with parents, siblings and other loved ones who have made the hardest decision and are — if only currently in theory — faced with the idea of no choice at all. Where would we even go from there?
Glimmers of hope and rebuilding connection
Eventually, we adjusted, as people tend to do. As the new school year got under way in the fall, WD’s teacher reported increased periods of him being awake and alert. By his IEP meeting in November, he had begun to regain some of his lost skills like holding onto objects and then letting them go, reveling in his ability to help put recycling in the bin. His teacher and I couldn’t stop smiling as we went through the list. And I couldn’t stop the sensation in my gut that I had, somehow, been the reason he’d regressed in the first place (another thing people keep trying to insist isn’t true).
But to get stuck in that feeling would be unfair to him. We still get to cuddle and read, at his house or mine, and he comes to church once a month where our beloved pastor wipes grape-juice-dipped bread along his lower lip. And I get to see him show off at school or find himself hilarious in his steadfast refusal to do so.
A few weeks ago, I met him there to give him a suit for his spring dance. He loved everyone telling him how handsome he was, and I loved seeing his smile on the dance floor as his paraeducator twirled him around in his wheelchair, joyful for all to see.
Amy Whipple is a Pittsburgh-based journalist and can be reached at amy.m.whipple@gmail.com.
This article first appeared on PublicSource and is republished here under a Creative Commons Attribution-NoDerivatives 4.0 International License.
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