I make a smooth swift transfer from chair to van, arms around my son’s chest and waist, as plops of rain turn to a steady soaking stream. He stays dry while I hurry to hoist his wheelchair into the deep recess of the mini-van’s rear storage area. In 2019 I'll finally buy an accessible van, but for now this works well.We both settle in our seats for the thirty-minute drive home, serene in the downpour. Me, soaked to the bone, but warm. He, humming quietly in the back seat.
Daniel watches the passing trees and buildings as water skims the windshield. We’ve taken many long road trips together since his birth in 1998. Over mountains, past rivers and lakes and through long stretches of flat interstate. He rarely makes a complaining noise during these times. When he’s bored at home he has a persistent moan that lets everyone know he’s unhappy. Traveling is a tranquilizer for us both. The rolling cadence of interstates winding through Georgia, Tennessee, Kentucky and into Illinois is one of his simple passions. Wheels on pavement.
By the time we reach home, Daniel is slumping in his seat. Our days begin early, and by nightfall his muscles are exhausted from the effort it takes to sit and walk. He’s been spared the tightness and spasticity that can come with cerebral palsy. His condition is a mystery, anyway, and his brain is structurally intact. No damage, just small. The medical term is microcephaly. It’s descriptive, not diagnostic. Many syndromes have microcephaly as a feature, but you wouldn’t necessarily know that because the named condition such as Down Syndrome or Rett Syndrome is used. Some people have small brains that function normally.
The rain is drizzling when I pull into the driveway, and he smiles as I lift him down into his chair and his thin hairy legs get a shower. We speed through the garage and into the house. He’s laughing as we race down the hall to his room. It’s too late for our usual evening routine of bath and shave, so I brush his teeth with the electric toothbrush and set him on his small commode, the one that allows his feet to touch the floor, and pull down the covers of his bed.
His signal for yes is usually clapping, but for this I ask “are you done? If you are, take my hands.” He smiles and reaches for me. I don’t know which chromosome may have a tiny piece missing, but I’ve been assured by The Geneticist, who is a brilliant man, that Daniel’s smaller than average brain is due to something within his genes and not to external causes (in a few years whole genome sequencing will finally solve the puzzle. Daniel has a small deletion on the calcium channel gene CACNA1A. He’s
rarer than rare.) Whatever it is that made him non-verbal and physically disabled, it has resulted in a person who finds joy in very simple things like the presence of people he loves. Sometimes I wonder if it’s the result of lifetimes spent meditating and letting go of expectations and obsessions that he is content in his silence and circumstance. I hope so, and I’m grateful for it.
While I was pregnant with him, I dreamed that my placenta was cancerous. When he was born with head measurements below the norm, all of the usual checks and tests were done, and my placenta was normal. I’m a registered nurse. Maybe the dream was a hormone driven fear image from one of my textbooks. Choriocarcinoma is the technical term for tumors in the placenta, the organ that feeds the fetus. I don’t know. I search my journals after his birth for signs that my body knew what was amiss. Dream fragments, thoughts and experiences hint at something, but it’s out of reach.
During Daniel’s first year of life I craved my family. Living hundreds of miles from them bothered me from the time his sister was born a few years earlier, but when he came along the desire to be cushioned by the love of familiar faces was intense for me, so when he was 18 months old, we made the leap.
We set out with my father driving the mini-van. “My name is Alice; my husband’s name is Albert. I live in Alabama and I sell automobiles,” I start the traveling alphabet game that we will play for many years to come on the 900-mile drive back and forth. We help Melody when it’s her turn. “How about Barbie?” I ask. She likes that. We giggle when grandpa says Barbie’s husband’s name is Bert, and play until we get tired and it’s time to pull over for a snack and diaper change for baby Dan. Melody is wearing a red and white striped turtleneck and a silky blue play skirt. She insisted. It’s humid and not particularly long sleeve weather, but she established a fashion sense and equally strong will at an early age.
My daughter’s baby dolls have seizures. They need medicine from a syringe three times a day. Sometimes they go into a hyperbaric oxygen chamber like the ones in her father’s office. I’m thankful that at least these plastic dolls are happy and their mother doesn’t come across as harried and angry.
After two days on the road punctuated by an overnight at a hotel, we pull into my parent’s driveway and practically run inside.
Mom sets out iced tea and turkey and cheese sandwiches with watermelon. Her house smells of vanilla from the candles she likes to burn, and the smallness of the rooms make me feel snug and secure. I don’t know at the time that our stay will last only two years and I won’t be able to convince my husband to join us for a life there. I don’t know that in four years our marriage will dissolve.
Stepping out the back door to smell the grass as my neighbor mows, I am happy. There’s a lot of hope as I hold a tiny boy, barely ten pounds, in my arms. The familiar soft green grass of the adjacent yards brings back good memories of watching clouds while lying comfortably on their silky blades. Florida grass is thick and tough. I feel a rush of love. Later there are fireflies, something else we don’t see in North Florida. I videotape Melody and her Illinois best friend, Anna, as they chase them and huddle on the porch with bugs alight on their fingers.
I am expecting great things for all of us here. Daniel will be attending a new program called RISE-- Rural Infant Stimulation Environment--that I read about when I visited the previous year. The local paper ran a story about it my first day there, and I took it as a sign. I interviewed with the program’s director, and connected with a parent I knew from high school whose baby boy with Down Syndrome would be in the class. The idea was to do reverse inclusion by having typically developing kids attend as well. Daniel is registered to begin in the fall of 2000.
RISE gave my decision to relocate extra weight. It wasn’t just me who would benefit from extra hands. After all, who am I to put my needs at the top of the list? This was for my son. Aren’t mothers supposed to be selfless and long-suffering? No one twisted my arm to marry and move to Florida in the first place. Who was I to change the script now? It’s no one’s fault but centuries of conditioning and expectations that played on my mind like a skipping record, giving me guilt trips and reasons to justify my actions.
I can’t imagine that in two short years we’ll be loading up and moving back to our house in Ponte Vedra with it’s tall staircase that makes carrying Dan to bed more challenging. I don’t envision life as a single mom.
I roll Daniel close to me at the picnic table. I always enjoy the field trips to the zoo, so I’ve taken a day off from my job at the nursing home where I’m in charge of wound care, and gone along with his class. It’s 2009. We’ve been on a waitlist in Florida for services that will provide among other things, respite care. I’ve written and made calls to the Governor and my senators asking that they add funds to the medwaiver, but year after year I’m told that it’s just not available. Sorry.
A new boy and his mother are seated across from us. She tells me they’ve moved here recently from Wisconsin. I ask her if she’s contacted the Agency for Persons with Disabilities yet to be added to the waitlist for services.
“My son is already on the waiver,” she says, smiling. “We had excellent services in Wisconsin and when my ex-husband got transferred here he told the APD that we must have help. They advised us to use the crisis option. My ex has back issues. Nothing too serious, but he needs help lifting our son. He’s in his thirties and has the usual back problems.”
I’m breathing tiny little breaths from way up high near my throat. “What? We’ve been on a waitlist for eight years! Are you serious?” My anger rose like the tide and I didn’t know who to blame. The yearly letdowns when the budget was announced in July and we were passed over again, were beginning to condition me for disappointment, but now I just felt pissed. Maybe anger was healthier for me. It did give me a game plan to work with, and after about a year of phone calls and doctor’s letters verifying my neck and back issues, Daniel was finally added to the Florida Medwaiver. We’d have help from strangers, some of whom would become friends.
The only reality show I’ve ever gotten hooked on is about to begin. The husband and his four wives are sitting close on the brown couch where they narrate each week’s episode. I cuddle into my recliner with a glass of Chardonnay, cheese and crackers on the stand beside me. I am completely intrigued by the idea of living a communal life with other mothers. For me, a bunch of dads would be cool too.
While my mother was alive, she and dad were like an additional spouse for me. She cooks while I bathe my child who cannot move by himself. She stays home with my five-year-old, while my dad travels with me to the hospital where my Daniel is having an electroencephalogram of his brain to determine how many seizures he’s having. There was a feeling of support and interest in everything about our lives that made the hard parts so much easier.
In the first season the reality show family all lived together in one large home. Each of the three wives (a fourth was added at the end of that year) had her own separate section of the house with their own kitchens and living space. It fueled my fantasy of living life with other people who are raising kids with challenges. I’d watch the Browns helping each other and dream. One mother is home schooling so that the other two can work. One is better at organizing and cooking for large family dinners. I want this part of the arrangement. Pooled resources. Shared gifts. Love. Caring. Why does that have to be a fantasy?
Over the eight years that the show has aired, the family gets real about the problems they face. Jealousy, incompatibility between wives and all the other messy business of life together. It’s never idyllic. I really like these people. The women are strong, and their children independent. I don’t want to share a man, but I still love the idea of community and sisterhood. So, while other middle-aged women are getting their envy on by watching one of the real housewives showcase a life of travel and expensive meals, I’m wishing for someone to do the laundry while I read to my son.
I open Daniel’s drawer full of shorts and other summer clothes and pull out his bright blue and turquoise swimming trunks. “Hey, you wanna go to the pool? You want to swim today?” I ask him as he stretches on his bed, head on a soft pillow. He grins and claps because water means freedom for him. I love gliding through the silky water with him an arm’s reach away. The pools in our neighborhood are surrounded by trees, and we hang out in shady areas on the steamy hot days. It’s healing for us both.
In a few weeks I’ll be having a mastectomy. It's 2015. This is my second cancer in two years. Both are early stage malignancies. In each, the concern that frets me is getting back to normal post-surgery as quickly as possible so that I can lift Daniel. Many women opt for a double mastectomy to eliminate the necessity of having the unaffected breast removed at a future date. I’m worried about having both arms out of lifting commission. The plastic surgeon offers to use belly fat instead of an implant for reconstruction. Real tissue allows for weight gain and loss, and looks and feels more natural. He would also make the left breast smaller to match. I say yes until I start to think about the longer recovery period and additional chance of infection. I opt for the implant and don’t want anything done on the left side. I just want life to return to normal as quickly as possible. As it turns out, the chemotherapy impacts me much more than the surgeries anyway.
I’ve read that caregivers are more prone to disease. One study boils that down to life spans shortened by eight years. Peachy. Maybe that stat would improve if I had a passel of sister wives, and if not then I’d at least have moms at the ready if I’m not around anymore.
In the early afternoon Daniel is hungry. I place a small container of yogurt, a banana, a water, a milkshake and the applesauce jar in front of him. He’s been communicating with me with a consistent moan that he is ready to eat, and I want him to have choices rather than decide for him what he should have. Immediately he reaches for the yogurt and I move everything else away.
He’s so happy with just the simple pleasure of being fed bites of peach yogurt. My sweet, gentle boy. His entire life consists of being acted upon, rather than being able to make a decision and go with it.
He’s gone down a lot of roads with me, trying to find a way for him to communicate more fully. He’s been patient as I try to help him read and spell. We’ve driven cross country to visit a non-traditional teacher of a method that helped her own autistic son to become fluent through writing. I’ve attended workshops, purchased letterboards and flip books with large letters in black and yellow to accommodate his vision impairment. I’m still hopeful, but I’m beginning to accept that he may never spell words that tell me how he really feels and what he wants. My heart holds out for the possibility that we will help him get to that place.
It’s raining hard again. We’re not driving, though, we’re high and dry in our living room. My daughter, Melody is stretched out in the recliner and Daniel and I are on opposite sides of our leather couch with dual recliners supporting us like hammocks. The sliding doors leading to the screened in porch are open, and we’re listening to raindrops on the tin roof. These two have grown up with meditation time. They both are usually up for silence only accentuated by the sounds of nature. We’re all tired, and after some quiet time we fall asleep.
Soon my daughter will be graduating college and moving out to start her life as an independent woman. She lives at home because her university is a short drive from our house. It saves money, and it gives an extra layer of support for Daniel and I. I’m trying to imagine what things will look like when she’s gone. It's 2018 and I’m 56 years old and trying to build enthusiasm for this season of life. Honestly, it’s hard to envision what’s around the bend. My daydreams include adding live-in help. Of course, this dream person is perfectly compatible with me and has a banging sense of humor. She cooks, likes to clean and organize, and her energy is off the charts. She understands Daniel and has inspired ideas for engaging and making his life joyful. She’s trustworthy and kind, and she’ll live with us happily ever after. Sigh.
My ideal world expectations set the bar ridiculously high. In reality, there will be tradeoffs and deal breakers going forward. There are things we need I haven’t yet considered, and I need to practice letting go. Ten years ago I still believed that a communal life was possible for us. I don’t feel it anymore. Maybe I’m just worn by the journey and a new wind will blow that gives me energy for the last leg. Stay open, I tell myself. Don’t let yourself be swept to sea by the voices in your head that let the waves carry you under.
We’re up early. I look at the weather app on my phone, and it’s going to be 75 degrees today with low humidity. Spring in January, one of the major advantages to living in Florida. Once the yogurt, applesauce and chopped turkey with mayo are in his lunch bag, Daniel and I load up and hit the road for the zoo.
He’s never really paid attention to the animals when we come here. He loves being outside, though, and stares up at the trees and the sky in perfect contentment. There’s a short line for the train today, and the two of us don’t wait long before we’re seated comfortably on the larger car designed for wheelchairs. A soft wind occasionally passes over us while the sun keeps us warm. It would be pretty easy to drift off to sleep here.
The ride across the bridge from our house to the zoo; the gentle motion of his wheelchair as we make our rounds to see birds, butterflies, snakes, zebras, gorillas and tigers; and the rumbling of the train circling the entire perimeter all keep Daniel happy. He loves movement. I love giving him simple pleasures. This love makes it possible to keep going and hoping and carrying on. So we do.