Genetic Code
By Kathy Gillen
“She shouldn’t have that,” I intercede just as my husband puts a spoonful of ice cream into Merritt’s mouth. At five years old, Merritt our youngest of four children has a very restrictive diet. No birthday cakes at parties or Slushies at Target. No ribs on the 4th of July or turkey on Thanksgiving.
Merritt has a mitochondrial disease called Leigh’s disease. When we were told it was a degenerative metabolic disorder I couldn’t keep it straight. Was that digressing bubonic disease or deteriorating metaphysic syndrome? Doctors throw diseases and disorders around and expect parents to absorb titles and syndromes when all the parents hear is, “severely disabled, early death.” But metabolic means Merritt’s cells don’t metabolize her food into energy. So even if I pumped her full of Red Bull, she would still not be able to hold her head up or grab a toy.
At ten weeks old Merritt started hiccupping without the hic, successive jerks with no noise. It wasn’t anything that looked dangerous, more like startles that new babies have. But I’d been through the baby game three other times and funny hiccups weren’t in my newborn repertoire, so I consulted the pediatrician. When those jerks were determined to be seizures, our nine-month journey to a diagnosis began.
When you have a child with a life threatening disease, you lose something. It isn’t the missing milestones or your baby’s inability to coo, that pushes you down in a pit, but the loss of a sacred maternal right. Moms with special kids lose their control-gene as the automatic doors to children’s hospital part. The benign receptionist must perform a medical procedure as she directs you to the green elevator, because from that moment on you are officially stripped of your C-gene.
“You will,” “you must” and “you better,” are removed from your mom vocabulary. These powerful tools of the mom trade, used to tell a child to scoop the cat box or finish his green beans, fall flat in the face of a disabling disease. The years we spend nurturing our C-genes, the perfect intersection between coaxing and cajoling, means nothing to defective chromosomes or angry degenerate cells.
“When will the tests for Rhett’s syndrome be back?” “Are there any other meds that could possibly stop her seizures?” “How soon until she can have another MRI?” These were the questions that replaced my typical directives. Doctors told me when and where, but even their wisdom was no match for the illusive question, “how long?” The disease had taken my maternal right to choose what was best for my baby. The same gene that kept pop-tarts out of the house and hats on children’s heads was now put in an extended time out.
But just as children learn to dodge mom’s long arm, tearing their hat off when they are one foot beyond her eyesight, I learned to evade the disease’s grip. Realizing that Merritt’s diet could be affecting her cells’ efficiency, I took that aspect of her fragile life and called it mine. Doctors don’t typically study nutrition or make suggestions. They may refer a patient to a nutritionist, but I found that even these specialists had no real understanding of cellular function and flax seed oil or seaweed. The moment I claimed Merritt’s diet as mine to control, my C-gene hopped off that time-out chair.
When Merritt started her well-researched diet with staples like kale, tofu and bottles of supplements, she improved. Her energy level increased dramatically and every six months her neurologist exclaimed, “Just keep doing what you’re doing!” Endless hours on the Internet and consulting with holistic nutritionists were the treatments I needed to reclaim my maternal rights. I did know what was best for my baby.
I took my control-gene for granted, thinking it would always be dominant. But even with Merritt’s special diet, she still suffers from her condition. She does not have a long life expectancy and I can’t control that. Moms with special kids are blessed by the early lessons we learn. We don’t have to wait for a child to fail calculus, get a DUI or marry a degenerate to know we can’t direct their lives.
The need to manage our children’s lives is strong, but the C-gene presents a tricky genetic conflict. Used too often, it can have devastating affects on our children, not to mention our own narrow view of their lives. But, rest that urge to dictate for a while and incredible possibilities open. When JP, my fifth grader, tells me he studies better sitting in the basement, I bite my tongue instead of reminding him that he has a desk in his room. He does great on his test. And when Paige my 13-year-old tells me she going out for the track team, I don’t mention that her tennis lessons are more important. My children are figuring out what works for them as I’m learning to curb my domineering tendencies.
With a recessive control-gene, the most marvelous of maternal genetic code gets printed on our children’s lives. The L-gene rules. Unconditional love steps up and takes on the dominate role. Children can then flounder, fail and triumph, knowing that whatever they do, mom will be supportive. And this piece of mother code is ours no matter what disease or degenerate enters our child’s life.
After Merritt tried the ice cream, she cooed. These noises are uncommon. She rarely smiles or reacts audibly to anything. If I’d tried to control Merritt’s diet that day, we would have missed her beautiful response. Instead I sat back with a bowl of ice cream, watching the kids squirt whipped cream directly into their mouths. When they catch me watching them, they wait for a scolding. But shocked expressions look back at me, when I say, “Give me a shot.” My control gene is chilling.
When her youngest child was diagnosed with a mitochondrial disease with no cure and little hope of developing beyond a three-month level, Kathy Gillen used her laundry room to sort, not only lights and darks, but raw emotions from packing lunches. Kathy’s book, Lessons from the Laundry, details her experience with this personal crisis. The book is currently being reviewed for publication. Find out more about Kathy’s book, laundry and life at www.lessonsfromthelaundry.com
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