This is the eulogy Matt and I read at Oliver's funeral.
Thank you for being with us today.
We stand before you full of gratitude and sorrow over the life and death of our son, Oliver Lloyd McNeil. Death, especially of one so young and so dear, creates this profound tension. Thinking of what a gift he was calls to mind the Psalmist’s words: “What can I give back to God for the blessings he’s poured out on me?” Yet losing him leaves us bereft and nodding along with a different brutally honest Psalm: “My heart is in anguish within me; the terrors of death…have beset me; horror has overwhelmed me.”
To fully comprehend our joy and grief, you have to first know Oliver. Some of you knew Oliver as a youngster, while others only recently had the profound pleasure of getting to know him. Some of you knew him through us or through our writings. And some of you knew and loved him from beginning to end.
Oliver developed and aged as all of us do, but he also had Sanfilippo Syndrome tightening its hold and weaving its way into his being. In his latter years, you had to put forth an effort to know Oliver. He was a natural introvert and his syndrome restricted his ability to make himself known. Today it is our honor to get to do something he wasn’t able to do himself: to tell you all about him and what he means to Matt and me.
Oliver was an opener of eyes. When he was born, we were handed this beautiful baby and for twenty minutes we rested in the assurance that he was healthy. We marveled at our perfect little boy who didn’t yet have a name. We rocked him gently and caressed his cheek, commenting that he was blowing bubbles. The nurse, recognizing that this was in fact a sign of distress, plucked him from our arms and whisked him away to the NICU where for 12 days he struggled to breathe.
After many stressful days, he improved. However, before we were discharged, his newborn screening test revealed he had a significant hearing impairment. At only seven weeks old, he was fitted with a pair of blue hearing aids. To think, there was once a time we looked at hearing loss as a crushing diagnosis. Oliver’s entry into the world was our first step on a long road, but it also led us to see beauty in imperfection and to learn the refining power of human frailty.
Oliver was joy. For as long as he could, Oliver started his day running full speed from our bedrooms to the front of the house, letting out happy shrieks along the way, excited by the promise of a new day.
He delighted in play and approached it with an endearing intensity. He once had a remarkable attention span and would play for hours with trains, building blocks, puzzles, and any toy that made noise, his favorite being his Handy Manny toolset.
He loved simple pleasures- holding a helium balloon as it bounced against the ceiling, petting an animal at the zoo, or throwing a ball whether you were ready for it or not.
Nothing was better for Oliver than time spent at a good playground. He would bring you a pair of shoes - maybe yours, maybe Wavey’s pink sandals - to let you know it was time for an adventure. At the playground nothing satisfied quite like a good swing, but you had to be careful because his love of swinging was stronger than his stomach. His favorite park was Clemyjontri, which is fully accessible AND has a carousel. Once he discovered the carousel, he was relentless about getting on board. Unfortunately, it only operated part of the year. There are a lot of things you can get a child to understand, but “closed for the season” is not one of them. Fortunately, the operators knew how much he loved it and frequently let him ride again.VOICE (Matt)
Oliver had a voice. He only picked up a smattering of words: ball, bye-bye, and duck for his favorite stuffie. He learned to say “ack” when referring to two kids in his class, helpfully named Zack and Jack. My favorite was how he put both hands on his head and said “Oh” whenever something fell or broke.
For a brief period he developed an arsenal of signs. More. Finished. Please. His first sentence should not surprise anyone:“Want eat”.
When the talking and signing stopped, he still used his voice to communicate - happy shrieks, sad whimpers, gretzy groans, contented murmurs. To the uninitiated they must have sounded like so much noise, but they were the sweetest music to us and gave us a way to know and understand him, his needs and wants. For years, I have carried on my keychain a Lego Chewbacca figure because it reminded me of Oliver, whose sounds everyone could hear but only a privileged few of us Han Solos knew the meaning.
NEPTUNE’S CHILD (Matt)
Oliver may have been our son, but he was Neptune’s child. Our first hint of his boundless and fearless love of water was him pulling us to the tub saying “buh-buh-buh” while signing bubbles. Waverly wanted out of the bath as soon as possible; Oliver luxuriated in it.
Our next clue was the way he would beeline toward any public fountain or splash-pad if the water was running. The opening of the World War II Memorial was a such a mixed blessing for him. On the one hand, its waterscape is amazing. On the other, he never understood that letting a toddler in a wet t-shirt and water-logged diaper frolic in a war memorial was considered faux pas in Washington society. Thankfully there were other places to play and only two times that we had to save him from the center of a splash-pad that switched from gentle trickle to full-blast.
I still remember Oliver seeing the ocean for the first time. Without hesitating, he charged towards it, pulling us after him. We made a special point of getting him to a beach at least once a year, although we had to keep a close eye on him—naps or beach reads weren’t really an option. We found it was as refreshing for our souls as it was for his. After Waverly passed away, we took our first trip as a family of three to Cape May so we could mourn and heal together by the sea. I’m so thankful that just a few weeks before he died we were able to take him one last time to be by his ocean together.
DEVOTED FAN (Matt)
Oliver was a devoted fan of Mickey Mouse Clubhouse and the Washington Nationals.
When it comes to tv, kids with Sanfilippo tend to like what they liked when they were three for the rest of their lives. For Oliver, that was Mickey Mouse Clubhouse. He watched it so energetically, he literally ran around the room as he watched. It made him laugh until he couldn’t breath, made him cry whenever Pluto was treated poorly, and soothed him when he was out of sorts. When an episode came to an end, he would stretch out his arms and passionately belt out the final note of the theme song and then wave bye-bye at the tv. Having inherited Shannon’s pipes and my pitch, it was very loud and adorably off key.
We took Oliver to his first Nats game in June 2009. It started after seven, and we did not expect the kids to last very long. To our surprise, Oliver watched like he was keeping score. He was two. He loved clapping along when everyone cheered and raised his arms whenever the crowd yelled. Throw in some cotton candy, and he was hooked on baseball. We left at the bottom of the 8th inning, over three hours after his bedtime. Over the years, Nats Park became a special place, where for three hours on Sunday afternoons, Oliver was just like any other kid, happily rooting for the home team with his family.
Oliver was a comfort. He loved giving and getting hugs, but he also liked when people around him hugged each other. When we was three, Oliver would come up to two people standing close to each other, put his hands on the back of their legs, and push them together. He did this to me whether I was standing next to Shannon or a perfect stranger. When it was someone who didn’t know him, they would ask,“what’s he doing?” I explained, “he wants us to hug.” Surprisingly, that interaction almost always ended with the stranger leaning in and awkwardly giving me a hug, making Oliver very happy.
Until the end of his life, Oliver loved hugs. In his later years he would position himself in front of you a certain way and lean in. If you wrapped your arms around him, he leaned in a little harder. I loved nothing more than getting him ready for bed, then getting down on my knees, pulling him close, and feeling my independent little boy rest his head next to mine.
After Waverly died in 2015, Oliver became our comfort. He gave us a continued sense of purpose and joy. Only with his passing did we realize just how much he had comforted us over these last three years.
Oliver was a wanderer who loved to move. Whenever we got on an elevator he would literally do a happy dance. He was always good company on a road trip—no distance was too far. He would walk as long as you let him, even when he became unsteady, so long as you were there to hold his hand. The simple act of riding on a plane, boat, bus, or train was fun for him. And he was probably the only DC native who was consistently thrilled with Metro’s service.
You probably know that we have taken many trips to Disney World. It started when we moved home from London under the cloud of an MPS diagnosis and we booked a trip to have something to look forward to. Make A Wish trips followed, and the kids loved it. We jumped at the chance to travel to other places, but as Oliver got older, Disney became the one place where we knew no matter what his limitations were at the time, he could fully participate and we could feel like a perfectly normal family for a few days.
Oliver was a brother. When Waverly first met Oliver in his hospital bassinet, she took one look and said, “Monkey!” In other words, they bonded instantly.
When Oliver started constantly putting things in his mouth, we gave him a red chewy tube as a safe alternative as that had worked for Waverly. He studied it for a second, then walked across the room to put it in Wavey’s mouth instead of his. He knew the red chewies were for his sister. Because of his generosity, we needed a distinct alternative that he knew was his. Thus, his signature blue chewy tube came to be.
And just as Oliver’s hearing loss led us to Wavey’s, her devastating Sanfillippo diagnosis led us to his. We had to wait one month from her diagnosis for Oliver’s test results. We got the call on April 17, 2008, while the kids and I were on our way to meet Matt. He left work early and we walked all over London, ending up at Regent’s Park, where both kids laughed and played as we wept knowing this very day would eventually come to pass.
Between then and now, we tended to think of Oliver as our healthy one. Honestly, he did a lot that made it possible for one person to take care of both of them. He stayed on the sidewalk when Waverly wanted to dart into traffic. He pulled himself up into our van when we needed to help her in. He held onto Waverly’s wheel chair when we walked. Because he was obedient and loved helping his sister, Oliver made it possible to get through life’s routines.
Oliver belonged. He was a student at Vienna Elementary for nine years, a frequent guest at Jill’s House for six, and a member of Restoration Anglican in Arlington for three.
We were so nervous for him when he started school. We weren’t sure how the other kids would treat him or if he would know how to interact with them. He had a rough start. He was most definitely a mama’s boy and very attached. Then one day we noticed that his backpack was full of books and toys. His teacher confirmed that yes, Oliver was stealing from school. But she also told us that he was filling up the other kids’ backpacks as well. Suddenly, the thieving didn’t matter; he was giving gifts to his friends!
We nearly burst the day I dropped Oliver off at school and a little boy yelled “Hi Oliver” and ran over to give him a high five. This was only a preview of the years to come. Whenever we took Oliver somewhere in Vienna we were treated to kids calling out his name. It was a gift enjoyed by all of us.
While we credit the parents and teachers for teaching inclusion and making all kids feel welcome, Oliver’s life at Vienna went way beyond simply being included; he belonged. And when you belong, the people you belong with miss you when you are not there. If that’s the standard, it’s been clear for years, that Oliver belonged at VES.
Oliver started going to Jill’s House to drop off his sister years before he was eligible to stay there himself. Every drop off went the same way: he excitedly ran in to the back doors which accessed the playground. And eventually we dragged him out, crying. But one magical December day he got to stay too. He was elated. He loved the pool and the bouncy house and getting to spend time with one of his best buddies, Mr. Isac. When Waverly was on hospice, Jill’s House squeezed Oliver in to give him and us desperately needed breaks. Walking into Jill’s House with Oliver was like being part of a celebrity’s entourage—everybody knew him and I was special because I was with him. Oliver belonged to Jill’s House.
We first tried to go to Restoration in 2012. We found a very old building that was inaccessible, so we turned right around and went home. When we inquired, the Resto staff assured us their new building would be fully accessible. A few years later, at the prompting of a friend, we returned to find a beautiful building designed with accessibility in mind. For three and a half years, Oliver was known and cared for by his community at Restoration. Last Christmas, Oliver was asked to carry the cross as part of an Advent service. He couldn’t do that himself, so his friend Eudora carried it alongside him while Sam pushed his wheelchair. This image perfectly encapsulates why he belonged to Restoration.
KNOWN, LOVED, MISSED (Matt)
Oliver was so much more. He was Boppy. He was Chumbly, nicknames that fit him so well.
He was his mother’s son, who had her look, her personality and temperament, and who followed her like a duckling.
Oliver was hungry, always hungry. He loved to eat.
He was only a few days old when the nurses in the NICU were referring to him as an old soul. And in bearing his suffering so nobly, with persistent joy and without complaint, he stirred the souls of others.
Oliver was our son but he belonged to you, too; he was your grandchild, nephew, cousin, student, friend. One of the things I will miss most about Oliver is how he brought out such empathy in you.
The poet Mary Oliver wrote, “To live in this world, you must be able to do three things: to love what is mortal, to hold it against your bones knowing your own life depends on it, and when the time comes to let it go, to let it go.” All of these are hard, but letting him go is the hardest. It was natural for someone who loved Oliver to pray for a miracle; none of us wanted to let him go. But over time it became apparent to us that HE was the miracle and the healing we needed was for our own hearts.
While I still have a hard time understanding why all this happened, I know people responded to Oliver by better loving those around them and that the world became a kinder place because Oliver was in it. Hopefully you have a better sense of who he was and what we lost.
Oliver, you made us so proud to be your mom and dad. You were the greatest of gifts. We love you, we miss you so very much, and we can’t wait to see you again.