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.
