Our First Special Olympics

It is our first Special Olympics. The opening ceremony includes a parade down the track and field of UNCW. All the classes from the county schools are walking, pushing wheelchairs and holding homemade signs that say, “Parsley Elementary”, “Hoggard High School.” A marching band is playing music and the feeling is joyful and triumphant. The carolina blue sky is clear and the spring sun is warming everything.

I arrive late to the tail end of the opening ceremony. I have to search through the sea of people for Oliver. The red shirts and crush of people make him hard to find.

Oliver and his class at Special Olympics

The band keeps playing and it reminds me of high school football games. Hearing the drumline, I smile and am taken back to being 18, surrounded by a sea of black and gold in the stadium at Concord High School. Football is so deeply imprinted on my mind, such a sacred ritual in a small southern town. I remember how I loved climbing into the press box to pray before football games. Even then I was trying to point people to the One I love, yet struggle to trust, during these days of suffering.

When I finally get to Oliver, his body is like a piece of spaghetti in his borrowed wheelchair, a faded color of purple, worn out from years of use. The band has stopped and now music is pumping through the speakers, wafting over the track and field, a sea of red shirts and smiling faces fills my view. I take a deep breath and struggle to understand the emotions that rise and get caught up in my throat. The lump, the tingle of emotion that wants to spill out. The sadness that seems to be shuffling around in my heart. It is hard to contain.

My eyes are already bowls full of sadness.

When I think “Special Olympics”, I’ve always thought of the teenager beaming with pride and holding his medal. I never thought about my Oliver being there...at least not as a participant.

I used to pray every night he’d be three things: a great big brother, a leader with a servant’s heart and that God would give him eyes to see people as He does. You know your life is changing when your prayers change. It may be the very first indicator that something deep inside is shifting.

Oliver and his one-on-one aide, Mrs. Henline

So here we are. Oliver’s first “event” —a short walk down the track. I pull my wet noodle of a son out of his chair. He is less than enthusiastic about the walk. As I steady him to stand, it dawns on me that we’re in a competitive situation for the first time. We’ve avoided Saturday morning soccer leagues,  so I’ve never felt this emotion before. It is strong. I like to win; Oliver hasn’t ever competed with anyone for anything other than a brain surgery slot.

I look to my left and to my right and realize we won’t win. Not only can Oliver no longer run, he can’t walk all that well today. It could be the seizures and it could be the meds. Who knows.

The bowls of sadness are filling up again.

I remember when he used to run everyday. He was like a lighting bolt through the backyard, the grass pushing into our bare feet as we chased one another.  I can hear his giggle even now, that dimple showing on his sweet face. I miss that, oh my how I miss that.

I stand there, trying to smile, waiting for the sign to “Go!”, but feel like my heart is cracking into pieces.

I don’t spend my days thinking about Oliver’s disabilities...it would be too hard. Mostly, I think about how to care for him, how to love him, how to communicate and break through to him. I don’t think about what he used to do. I don’t wallow in all the ways he has regressed. I don’t even let myself imagine what he would be like if he was typical. It hurts more deeply than anything has ever hurt in my entire life.  

Oddly enough, this whole experience of the Special Olympics has been hard, highlighting how much his health has declined. I expected a joyful day, not a wake-up call. Not the freight train of heartbreak that is barreling towards me.

As they lined up the other “walkers” he simply laid on the track. Disinterested, lethargic from the potent cocktail of meds in his small body. In his typical sensory-seeking way he licked the rubber material on the track. He just kept folding his body like a crumpled t-shirt onto the ground.

I kept saying in a cheerful, encouraging voice “use your legs, Oliver”...”stand up, sweetheart.”

Oliver and his teacher, Mrs. Pollock. Clearly he was not too interested in the competition. 

Oliver also participates in the softball throw, which consisted of me competing in the softball throw. I put the ball in his hand, but he wouldn’t let go. He kept trying to bite the softball, so finally I threw it for him (with his hand in my hand). It was not elegant, but it got the job done.

As I was walking to the tent from the softball throw, his teacher calls out,  “come get Oliver’s ribbon.” Turns out he got a ribbon for 5th place. I had to laugh. I actually laughed so hard I cried, those bowls of sadness finally spilling over. I’m 33 years old and despite competing with kindergarteners with special needs, I still placed 5th!

I leave the event early, unable to control the tidal wave of tears that are now coming. I am an emotional soup. We have a trip out to Boston tonight for another appointment for Oliver. It is a good excuse to leave. I push Oliver’s wheelchair across the field to my parking spot, the tears change from normal crying to heaving sobs. I remove my sunglasses to let the moisture and heat escape. Will there be an escape from this?

As I walk down the sidewalk I pass students going to class and it dawns on me that it has been 15 years since I walked these same sidewalks as a student.

At 18 you can’t know what is ahead of you.

By the time I got to my minivan the sobbing had turned into a few tears trickling down my cheek. I turned on a Spotify playlist meant to comfort and sat there, AC running hard against my face. I pull the handicap plaque off my dashboard. I look back at Ollie, tired and hot. His blonde hair and blue eyes shining. I love him so much I think my heart will come out of my chest.

I am so weary of watching him suffer.

I pull out of the parking spot and call the office. Work is the most satisfying distraction. There are deals that need to be negotiated and agents to encourage. There is an amazing administrative assistant holding it all together. There is a husband waiting at home for us to drive to the airport. He needs my tenderness and encouragement too.

Watching Oliver struggle, this hard, for this long has changed us. On August 1st it will be five years. We never imagined wheelchairs, Special Olympics ribbons, handicap plaques and seizures.

When I get home, I peel Oliver out of his car seat which is now much too small for his 65 lbs body. His adaptive car seat has been ordered. The new seat is huge, has a five point harness and will go up to 120 lbs. in weight...we just have to wait for the insurance to approve our request. That was 6 months ago.

I stick the baby blue “5th Place” ribbon in the file folder by the fridge. It falls out every once in a while when I am searching for our checkbook. I can’t bring myself to get rid of it, but I also can’t put it on the fridge. I shuffle it around just like I shuffle around all the sadness in my heart. It never goes away, it just moves around. Sometimes it is well hidden under the intense pace of my life. Other times the sadness spills into plain sight. Sometimes the bowl just overflows.

I know there is no need to hide the sadness. The depth of this sadness is evidence of the immensity of my love. Real love, sacrificial love that wants Oliver’s good...at any cost. It is the kind of love that spares no expense, goes to any length to care for the other. The sadness will never break me, as long as the love is stronger. Love wins. That is a competition worth fighting. That is a ribbon worth keeping.