|Photo by Amanda Holloman|
I started this year off standing in Oliver’s hospital room on the 6th floor of the UNC Children’s hospital wearing a hat that said “Best Year Ever”, which under the circumstances was exceptionally hard to believe. Friends had brought the hat, some confetti cannons and sparkling grape juice to help us kick off a new year. It was quite the start to 2017.
When we sent the Christmas Card last year we had no idea how sick Oliver really was. On Christmas Eve morning, the day after he turned 8 years old, he began walking into walls because he was so dehydrated. To make it worse, he had gone far too long without urinating. We thought we’d do a quick “pop in the ER” (who even says that?!?) before all the cousins and family arrived for Christmas. When we went to the ER, Oliver decided to intermittently stop breathing in front of the doctor in his exam, which was obviously terrifying and perplexing. Turns out if you don’t breathe normally you get a ticket right up to the Children's floor, which began his 4th hospitalization of the year. We were told Oliver would get an ambulance ride to Chapel Hill sometime on Christmas Day as the local team at our hospital found themselves out of ideas. It was time to call in the specialists (again).
Since it was Christmas Eve, I ran home and got Oliver’s Christmas gifts, toiletries, and of course our Christmas PJs. I couldn’t forget our tacky, yet beautiful 4 foot hot pink Christmas tree from Big Lots, which I knew would look great in our room. I figured, “Why stop at the tree?”, and hauled all kinds of Christmas decor from our house, up the elevator and into our room. *Here is a little secret we learned last year. The spirit of Christmas, the wonder of it, was not diminished by our physical location. The love and hope of Christmas knows no bounds...hospital room or your home, you can make any place sparkle with love.
Once in Chapel Hill it became clear to all of us that these recurrent hospitalizations and extreme bouts with pain weren’t just “stomach issues.” This constellation of symptoms was something much more serious and clearly life threatening. After days of tests and procedures (many of them painful, some requiring sedation), the team at UNC diagnosed Oliver with a secondary Mitochondrial Disorder. This was heartbreaking news. In short, this means that sometimes his system is so tired it is hard for him to breath, and his stomach does not always empty food properly. He is more fragile than we ever understood him to be. This diagnosis (at least partially) explained all of these odd symptoms we’d never seen before. It was also decided that Oliver needed a g-tube implanted to help with the dehydration, urinary, bowel and swallowing difficulties he had so quickly developed. That surgery went well and we were finally cleared to go home.
On January 10th we left the hospital with a very weak and vulnerable child, tons of new medical supplies and levels of anxiety we had never before experienced. If you saw the photos online, you could see that Oliver was a severely skinny boy. He lost over 20% of his body weight during his hospitalization and looked shockingly gaunt. Andrew and I had no idea how we’d manage this new complexity of Oliver’s care. But we did. We survived it. As we say all the time, you grow a muscle for it.
The biggest concern for Oliver this winter will be getting the flu or even the common cold. We met with a world renowned geneticist in May who cautioned us that the flu had the potential to be fatal for Oliver. This is due to another genetic mutation we hadn’t known about previously. This mutation relates to how his immune system works, and is why we have to be so careful about exposure to anyone who is sick.
Of course you are wondering, how is Oliver now? Thankfully, his stomach pain is fairly well controlled. He is still obsessed with tractors/lawn mowers/golf carts (hence the photo on the front of the card). He still loves to rock back and forth to the beat of the music and is currently on a Coldplay and Imagine Dragons kick. He is not as active as he was physically in years past (hello Mitochondrial Disease), but when motivated can still run and frolic quite joyfully. He is now officially homeschooled (didn’t see that one coming) and gets academic support from wonderful tutors. He knows his numbers from 1-100, all his letters (and despite the fact he is non-verbal), his teachers tell us he is pre-reading! He is back up to a reasonable weight, and we often call him giraffe legs because he is so tall and lean. He enjoyed horseback riding for a season this summer and splashing with us in the YWCA pool. Every single day we make sure that Oliver’s life is filled with laughter, love and music. He is currently in a rather silly mood and we simply can’t get enough of hearing his laughter. He is cheered on and cared for by a large care team, many of whom have been devoted caregivers for him for years. They are family to us and a large reason why we have so much fun, even when doing the hard work of caregiving. I think that all of us feel like we are better, deeper, more compassionate people for knowing Oliver. When I was pregnant with Oliver, I prayed for him each night and I’d ask God to make him a strong leader. It has taken me all this time to see that in an unexpected way, Oliver is leading others. He is shaping the way people interact with the world and stretching them to see the complexity of the human experience. He is a strong leader in a frail body. This should be no surprise, because of course God knows that power is made perfect in weakness and that those that leave the biggest legacies often suffer a great deal.
Remember that “Best Year Ever” hat from New Years? For our real estate company it was certainly true! 2017 was our best year ever. On the back of the card are photos from our Ribbon Cutting event at our new office in May. As we move into year 5 of running our small business, we are so grateful for the support of our friends, family, clients and our team. Being business owners has allowed us the flexibility and resources to care for Oliver, and also created a way for our employees to do the same for their families.
Assuming Oliver’s health cooperates, Andrew and I will take some time together and ring in New Year’s 2018 at Bald Head Island with some dear friends. God willing, no hospitals for this year’s ball drop.
Colin Powell said that “optimism is a force multiplier” and we couldn’t agree more. We deeply appreciate your prayers, love, generosity and friendship. We simply could not have survived this challenging year alone. Turns out your hardest year can also be your most meaningful, even your best year ever. Merry Christmas and Happy New Year! May 2018 sparkle with love for you and your family, no matter where you find yourself.
Andrew, Steph & Oliver (9)