Note: I wrote this a year and a half ago for an essay contest. Some of the content--especially the diving story--will be familiar to longtime readers. It's out of date, but as I began to write the post I had planned to write today, it struck me that it might be helpful to post this first. Also easier.
In the winter of 2008, my youngest child was halfway through kindergarten, and I was beginning to feel like myself. I had taken up running, lost 20 pounds, and written a novel, and now I was looking around for some more projects. Some of my friends were doing triathlons, but before I attempted a triathlon, my swimming needed work. I grew up near water, and I love to submit to the power of the ocean waves and gaze out at the intricate beauty of the river. Nevertheless—despite years of lessons—I could never swim laps without the distinct feeling that I was drowning. By the way, this isn’t an essay on “I never thought I would do a triathlon.”
So I looked at the Adult Aquatics offerings at the YMCA. They offered three levels: 1) For the total beginner 2) To "become more comfortable in deep water" 3) Improve your strokes. I decided on option two, although I was equally comfortable in shallow or deep water, just unable to swim in either. On the first day of class the instructor asked what my best stroke was. “Um, I don’t really know any strokes other than freestyle, so…freestyle?” He looked dubious. “Let me see you swim a lap,” he suggested, “but we may need to bump you back to the beginner class.” Somewhat to my surprise, I swam a lap. “Actually,” he said, “that was great. I think you should switch to Level 3.” I looked over at Level 3, where a woman was barking something like “8 laps butterfly GO!” “No thanks,” I said. The other people in my class were, in fact, afraid of deep water and almost totally unable to swim; but there was no level 2 ½.
Two weeks later my class had a substitute teacher. She was great—for some reason I clicked with her much better than my regular teacher—until she asked, “Any interest in learning how to dive?”
I had interest in learning how to dive when I was about ten. I spent some time at the side of the pool with friends vaguely trying to do it, and some time with my mother trying to teach me, but it just didn’t happen. Then I got too old and self-conscious to be a beginning diver. So when the question came up, I looked away and didn’t answer. My classmates, however, all said “Yes!” brightly and without hesitation. Really? I thought. Really, Miss Literally Clings to the Side of the Pool, you want to learn to dive? You know you’ll be diving into deep water, right?
I went along, though. The silver lining of self-consciousness is that, at a certain point, not trying becomes even more conspicuous than trying. I learned to dive that day. After class, I hopped in the shower, and as I began to rinse off, I found—somewhat to my surprise—that I was crying. I think diving into the pool moved me to tears because it was something I thought I would never, never do. I thought that door was closed. I thought I was too old. I thought I was too scared. I thought I was too embarrassed.
But this isn’t an essay on “I never thought I would learn to dive.”
Just a few weeks later, I discovered that I was pregnant with my fourth child. I was excited, because I felt as if I really knew how to do parenting now. I knew what to worry about and what not to worry about, how to nurse in an unsupportive chair and that this too shall pass. I knew all the good jobs in the PTA and how to make dinner from a nearly empty pantry and I had finally found a good pediatrician. Unfortunately, my body, which had been delighted to see me through three uneventful pregnancies, betrayed me this time. The 20-week ultrasound showed that the baby was not growing fast enough. Thus began a year in which I repeatedly struggled to my emotional feet only to be hit by another baseball bat. My blood pressure went up. I went on bed rest. I was hospitalized. My son was born eight weeks early, tiny but perfect: “a feeder and a grower,” they said in the NICU. He was struck by a Group B strep infection at less than one week old, hemorrhaged in his brain and lungs, and nearly died.
He recovered, came home, but showed developmental delays. An MRI uncovered extensive brain damage. We began to worry that he could not see well. We saw a rock-star neuro-ophthalmologist, who confirmed that he could not see at all. The hardest blow? Less than a month later, he began having seizures—the kind that come with a likely prognosis of severe mental retardation and behavior problems. Nine months after that he was diagnosed with cerebral palsy.
I never thought I would have a child with special needs.
There is a new pool to dive into almost every day.
I have to explain to acquaintances who ask brightly, “How’s the baby?” that the baby is disabled. Or I decide not to explain, answer weakly, “Great,” and hope someone else brings them up to speed before we meet again.
I have to meet with a physical therapist, an occupational therapist, a developmental intervention therapist, a feeding specialist, and an assistive technology specialist, observe what they do, and try to implement all of it into our daily schedule. I go to neurologist appointments, ophthalmologist appointments, physiatrist appointments, orthotist appointments, and rehab technology appointments, then try to balance the sometimes-competing prescriptions for my son’s treatment.
I have to consider the future. If we move, it must be to another town with good schools and good social services. How far might we have to commute to a school for the blind? How will that affect our other children? Might there come a day when we can’t care for our son at home? What financial plans do we need to make?
I cannot just submit to these waves, and I cannot just gaze out on the patterns of my life. I must act, day after day, and be an advocate and an administrator and a teacher for my son in a way that is totally new to me. I cannot be too old, too scared, or too embarrassed to be a mother to my son with special needs; but I do not know how to do this kind of parenting at all. Some days I stand on the block for a while, shivering and gazing down into the blue water, and then I step off, wrap up in my towel and go home. Most days I manage to dive in. I don’t know if I’ll ever have that watershed moment when I cry in the shower, when I get to rinse off the fear, the worry and the regret.
I did finally manage to finish a triathlon last month. The swim was the hardest part. On the way out, I had to fight big waves. On the way back to shore, I tried to use them to my advantage. I didn’t cry at the end, because I thought—I knew—that I could do it. Once I dove in, I had to do it.
Love love love. And huge hugs for you!
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