A bittersweet Christmas isn’t pleasant but can be special.
We knew our son Percy would be born in December 2016. We had learned it way back in April of that year. What we didn’t know at the time; Percy had Down syndrome. Doctors would inform us at 28 weeks gestation after multiple ultrasounds. Hearing this news so early gave us a lot of time to prepare for Percy’s arrival. It included finding a place to stay when Percy was in the city hospital.
The doctors told us Percy could spend a long time in the intensive care unit after he was born. It could be a month or longer. In addition to Down syndrome, Percy had prenatal conditions affecting his stomach and heart. At least one would require immediate surgery. The hospital was located in a major city 300 miles away from our town. Where could we stay for an indefinite period of time?
Cities are expensive under the best of circumstances. When taking a vacation, you can stretch your budget here and there. With the birth our second son, we faced high medical bills. We were uncertain how our health insurance would cover them all. It put us in a frugal mindset when searching for short-term housing. The place would need to be near the hospital, a criteria that would add to the cost.
We considered renting an AirBNB. And yet, the lack of an end date for our trip was a problem. We could rent one for thousands of dollars only to rent another if we overstayed the length of time we guessed. An extended-stay motel with a kitchen was another option. It was found mainly around corporate business parks. Percy would be staying at an urban hospital where nearby lodgings were pricey.
The hospital itself was world-renowned. We were fortunate that Percy would be given the best care available. And yet, the hospital was situated on a large hill like a castle out of a Tolkien novel. There was nothing close by. We were ready to help our son in any way possible. In some ways, we began to see his birth as a big problem. We knew it shouldn’t be this way. Our son’s birth was a big event.
Fortunately, the hospital told us about Ronald McDonald House.
It sounded like a great deal. Ronald McDonald House offered free lodging to families of children with serious medical conditions. The social worker at the hospital assured us Percy would qualify. It gave us momentary pause to hear that our son qualified as having serious medical issues! And yet, we knew. Percy was coming into the world with medical problems and a lifelong genetic condition.
Certainly I was happy about the offer from Ronald McDonald House? Admittedly, I was skeptical. How did such an important service fall to a fast food restaurant company? It didn’t seem to fit. Probably everyone had had heard of Ronald McDonald House from signs located inside McDonalds restaurants. Customers were encouraged to donate when paying for food. Maybe the most telling aspect of my cynicism, I had never considered myself as someone needing charity. I was a huge proponent of giving to charity. Would I be willing to accept the charity given by someone else?
The offer couldn’t have been any better. Ronald McDonald House had an incredible policy of allowing a family to stay as long as needed. It solved our first problem of being uncertain about our plans. The Ronald McDonald House lodgings were located at the base of the hill where the hospital was located. It solved our most pressing issue of having constant access to Percy. The hospital’s aerial tram would deliver us directly there with no need to get into a car.
We couldn’t say no. They booked us a room for early December.
Iris, Julian and I would check into the Ronald McDonald House a day before Percy was born. We didn’t know Iris would go into labor the following day. It was good timing. That year, the entire region was expecting a record snowfall. We had made the cutoff for safe travel and welcomed Percy into the world before we knew it.
Percy was whisked away into the neonatal care unit immediately after birth. We would need to make official visits to see him. The doctors had told us this beforehand. It was a jarring consequence of Percy’s multiple conditions. At least, Percy had been born without issue.
One benefit to Percy’s prompt arrival was the possible return date to our town. It was the start of December. Best case, Percy could be released in a couple-few weeks. That timeline would have us departing the hospital before Christmas. It was our hope.
It’s hard to describe the feeling of leaving your newborn at the hospital. The NICU didn’t have a place for parents to sleep. It was a highly-regulated environment. All visitors were asked to scrub their hands. We were asked to wear masks (years prior to COVID). Most of the babies in the NICU were premature. Some struggled with serious problems. Others were under observation. Children born with Down syndrome were placed into the NICU as a routine precaution. In Percy’s case, his heart and stomach problems were the main reason.
The pediatric surgeon decided to operate on Percy’s stomach. Percy was being fed by a tube inserted below his stomach because the chambers didn’t attach. Infant surgery is a procedure we knew was necessary. We would watch our little boy live on a ventilator for a day afterwards. He looked frail and bruised. It was hard to see.
Iris and I took turns going to the hospital to sit with Percy. We couldn’t hold him yet. Our other son Julian was two and a half, old enough to know something about Percy’s issues. Mostly, Julian enjoyed walking through the hotel we were in. I had pictured accommodations at the Ronald McDonald House to be cold and institutional. I had a misguided, Dickensian sense of charity. It turned out Ronald McDonald House occupied an entire floor of a Residence Inn. It was a temporary location, we’d learn. A permanent home was under construction closer to the hospital. We began to wonder if we’d see that facility. Percy would need many return visits to the hospital for evaluation and a surgery on his heart.
When your child is diagnosed with special needs, your life expands quickly. You’re put in contact with medical specialists you vaguely knew existed. You face extended time at a hospital that, if you’re fortunate, you don’t know much about. Percy being our second child, we were still relatively new at having a newborn. Childbirth was meant to be a fun, disorienting season for parents. We were confident the doctors would fix Percy’s medical issues. His genetic condition wasn’t fixable. Ever hopeful, we were anxious and cautious as well, wondering what a normal life for Percy would look like.
Down syndrome is a genetic condition with high name recognition. People who think they understand Down syndrome use it as a derogatory pop culture reference. And yet, Down syndrome isn’t clearly understood. It wasn’t by us. Down syndrome is the presence of three of the 21st chromosome instead of two. It brings physical limitations and cognitive challenges throughout one’s life. Often, Down syndrome doesn’t require corrective surgery. Only half of the babies have a heart condition or a stomach problem. Percy had both.
One specialist at the hospital was an expert in Down syndrome. He showed us the condition from a day-to-day perspective. People with Down syndrome are far from incompetent punchlines to offensive internet jokes. They often use every bit of the potential they’ve been given. Can it be said for most people today? Children with Down syndrome who are nurtured by their parents can grow up to own businesses, go to college, and even get married. It all depended on the severity of the condition and the support the child received.
It helped Iris and I to relax. Had we been as excited for Percy’s birth as we were for Julian’s? If we weren’t, it was because of the lukewarm information we had received from our local doctors. They didn’t know anything about Down syndrome other than, imperfect baby.
The specialist at the hospital helped us to see Percy was a perfect baby in an imperfect world. All kids would have problems. Percy’s came a little early. Percy would receive the love and attention he needed. His future would be as bright as any child God had created.
Days passed with Percy in the NICU. Iris and I made the trek to the hospital up the aerial tram. The expected snowfall blanketed the city, tying up traffic for miles. Back in our town, snow had accumulated to several feet. We wondered how we’d get home with that much snow between here and there. It wasn’t a problem, yet. Percy was only now getting oral feeds after his stomach surgery. It was mid-December. It appeared likely we’d be here for Christmas.
We were fortunate that every detail of Percy’s care was being worked out. Doctors were pleased with Percy’s progress. We had a place to stay while he recovered. The Ronald McDonald House was an expert at helping overwhelmed families with everything from tram passes to food in the kitchen refrigerator. They even had a gift closet for parents who were too busy to shop for their other children. Julian was able to pick out some presents while we stood by, feeling blessed.
And yet, Iris and I were processing the thought of Percy’s recovery. We watched the NICU nurses take care of his medical needs. When he was released, how would we fare? When would Percy need heart surgery? How well would he grow in the meantime?
The sky was gray. The hospital environment was friendly but dreary. Many families faced incredible challenges with their infants. Percy was one of the healthy ones. Not every baby would survive.
Everyone handles a life crisis differently. The phrase “the new normal” was one I kept looking to. When would being a parent of a special needs child feel normal? Would it ever? Iris had her own way of processing an unexpected season of life. Her way and my way didn’t always align. We soldiered on together, often feeling alone.
The day we both dreaded appeared. Iris, Julian and I woke up on Christmas Day in our room at the Ronald McDonald House. Percy lay in his hospital bed in the NICU up the hill. That day, we observed Jesus’s birth. It was a humble beginning. Mary and Joseph being far from home, it was God’s plan for Jesus to come from nowhere. Though he was a king, he was not born in a palace. God wanted his Son to be accepted through eyes of faith. It took hardship to see Jesus clearly.
Julian enjoyed the presents he received from the gift closet. He played with a case full of colored pencils. He used a boat toy full of animals meant for the bathtub. Another good tiding, we received permission from the NICU to bring Julian with us. They didn’t allow siblings to come into the NICU during the cold and flu season. Julian met his brother Percy for the first time. It was a good Christmas present.
Nurses allowed us to care for Percy while were in the NICU. They were prepping us to take him home. By the time New Year’s Day rolled around, we weren’t disappointed at being away from home. We could see the end of the tunnel. By January 5th, we would be discharged.
We had spent 35 days at a place we didn’t know existed nine months before. Our time at the Ronald McDonald House helped us to see life in a new way. We learned to be flexible. Anything can happen on any given day. Our expectations of normal will be challenged. The promise of Christmas isn’t about maintaining a status quo we’re comfortable with. It’s a seismic shift that offers us peace within overwhelming chaos. We need only accept it.
That year, our family was featured in the Ronald McDonald House Christmas letter.
This post first appeared at I Can Count to Four.