Davis did an excellent commando crawl toward his new toys on his first birthday as family and friends gathered around to watch. He had recently learned to lift one hand and keep his balance as he reached for something. Feebly he creeped forward on his belly toward the brightly wrapped boxes. I was unwilling to see the expressions on the faces around us because I knew what they saw, sort of—that his body had not yet met a developmental milestone generally mastered between the ages of 6 – 9 months of age. I scooped him up and carried him to the kitchen to lean him into the seat of his highchair. With a large piece of cake on the tray before him, we sang Happy Birthday and blew out one lonely candle that almost wasn’t. A birth wreck, a life flight, a hard start to life. In the first few months of his life they called him a floppy baby, his body had the strength of a Raggedy Andy doll.
Beside me stood his dad Rick and our older children Ryan and Lynnell. A blended family, Ryan age 10 was Rick’s child, Lynnell age 5 was mind. We blew out the candle. I admit I threw the first piece of birthday cake at Rick. Gotcha! Our birthday boy giggled. He chuckled again when my husband retaliated and nailed me back. Ryan lobbed a thickly iced corner piece toward Lynnell. She smeared some on our Davis’s cheek. We continued the play as our guests laughed. We needed to laugh.
I cannot remember who won the cake fight, only that the kitchen lost, and my heart felt lighter.
Over the years, the cake fights have continued, with a few birthday party whip cream fights in the back yard. Gotcha has become a catchall phrase which helped us to laugh. The developmental stalls continued and difficult medical issues dominated our landscape as we slowly adjusted to the extra help he required to learn simple tasks like how to put his arms out in front when he fell. His genetic diagnosis arrived the same week he was scheduled for brain surgery to aspirate two arachnoid cysts. He was 3 ½ years of age. The morphine induced coma lasted three weeks.
What did you say he has? People would ask, some more tactfully than others. He’s number 34 to be diagnosed with a deletion on the 22nd chromosome, 22q13.3. In California? No. In the world. What does that mean? I had no clue. I was still arguing with God, The Fates, the benevolence I had always felt as a guiding light in my life leading me to better doors when one closed, better options. Why?
When Davis was a toddler, I understood that he would always require someone to care for him. I gave up trying to potty train him. When Davis was 20, I forgot to tell one of his new caretakers that he could not be potty trained. She taught him to stand up or raise his hand when he wanted to use the toilet. Lesson learned—never say never in the ever shifting landscape of special needs. That landscape became a minefield when his seizures began at age eleven.
I will never get used to the pre-amble. His eyes roll back as he slips away. His breath disappears, his back arches unnaturally, his limbs tighten into straight rods that must be kept safe from striking against a hard surface during the next phase. This is my only opportunity to have enough time to crawl behind him and protect his head if I can. We have slipped in showers, my own head barely missing the toilet. We have been stuck on stairs, and he has had a seizure cluster in a plane halfway between Maui and California. That awful question on the intercom, Is there a doctor on the plane? was for our son. Three paramedic trucks and a cluster of fire trucks and police cars met us at the gate. When they helped Davis off the plane, ahead of me, passengers reached out to pat me as I walked out behind him. God bless, and God has a plan. These type of accolades usually fall like confetti in a parade when strangers stumble upon what feels awkward to them, but not to us. I have nurses who need to hug me, doctors who tell me there is a place in heaven for us, and people who veer away because, I get it, disability is not comfortable for them to be around.
Long ago, on a beach in Maui called Kapalua, a strange man brushed by me, unbalanced and loud and I felt confused by his behavior. An elderly couple caught up with the odd man and walked with him toward the water. The spectacle continued, the man flapped his arms like wings as they placed a fin on each foot. He tried to step forward in calf deep water and tumbled. He reacted like a child. Oh, I thought, he’s not like us. The us encompassed anything I thought of as normal. I am pretty sure that is when the Deities above concocted their plan to fix me, to correct my version of us and them.
Back on that beach, the elder woman calmed the man down and the older man guided him toward deeper water. He floated over the reef. The older couple’s patience and kindness exhausted me. She smiled when she caught me staring. Embarrassed, I looked away, relieved not to be in their situation. Sadly, I summed up their experience as less than my own because their challenges felt different from mine.
I wish the seizures were not part of Davis’s challenge.
Oh sweetie, I whisper as he slips away, Mommy is here. Sometimes I sing. Other times I stroke his face once I am sure he is safe. With his limbs locked like rods, his lips a bit blue, I wait for the worst part, the full body spasms that seem to go on forever, and end slowly with the scent of urine, the sheen of sweat, and the melt of his body, exhausted like a ragdoll, wherever we have managed to ride out the storm. Planes. Cars. Banquets. Stairs. Convulsing is such hard work.
Why? I used to shout into the quiet of the forest when I could get out for a trail run, post-seizure. Why him? Why this? The only argument I have ever had with God is about the choice to omit the one sliver of a slice on my son’s genetic makeup. The part my son needed in order to one day drive his own car and select his own future. To date. To choose. Why? That’s not true. We argue a lot, in surgical waiting rooms, when something new on his body does not function as it should, and when I watch him stare at other children and adults his age who are typical…not different. Why?
On one such run, a few paces past the start of my tantrum, a deer broke through a thicket of aspen and landed on the trail in front of me. We both paused. Her deep brown eyes quelled the storm within me. We both froze for a timeless moment before she leaped away and the seizures in my heart settled.
When did you know?
When I could without breaking.
The knowing comes in spurts when a new medical issue or illness steals away a piece of his capacity…again. Our baseline for normal shape shifts and forces us to comply with yet another new unrecognizable landscapes in the land of Special Needs. Did it before, we can do it again, is my mantra.
How do you do it?
Sometimes well, sometimes not, depending on the moment.
Beyond the obvious, that it is not an option, doing it is about the deer. It is about the nurse who hugs me after we succeed in getting Davis’s temperature back down to the land of the living. It is the memory of Davis’s doctor leaving our home back into a blizzard with his medical bag clutched tight as he faces down the wind. The gifts continue: the volunteers with our local Disabled Sports Eastern Sierra program who ski with him in winter and bike ride or canoe with him in summer, the friends who bring over dinner because we had to cancel plans with them due to Davis’s health.
82,000 words later into a story I wrote to help me understand our journey, I remain a witness, not the wise one with any answers. If I hurry him along him because we need to be somewhere, he sits. I stop. He wins. We both win, because the pace special needs is slow, unrushed, fully present. We, his parents, are now the elder couple in the water with a son who flaps and vocalizes his joy. I swim beneath the surface and pop up, Gotcha, in front of Davis. We are them. With a smile, salted at the edge with a few tears, I admit the Gotcha is back on us.