Wednesday, September 2, 2009

The Taut Ties That Bind

Maya doesn’t like to pee. She drinks a fair amount of fluids, but she can hold her water as it were for a few hours. Even her preschool teacher mentioned it to us. So yesterday we mentioned it to her pediatrician, a lovely and friendly doctor who has a 17-month old son.

“It’s probably nothing serious. Might just be a control issue,” Dr. Patel said. Then she examined Maya’s back and noticed a slight curving and puffiness on the right side near her butt.

“You know,” she continued, “the urination problems and the thing on her lower back could be a sign of something more serious. She could have a tethered spinal cord.”

According to the National Institute of Neurological Disorders and Stroke, “Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. The course of the disorder is progressive. In children, symptoms may include lesions, hairy patches, dimples, or fatty tumors on the lower back; foot and spinal deformities; weakness in the legs; low back pain; scoliosis; and incontinence.

“Tethered spinal cord syndrome may go undiagnosed until adulthood, when sensory and motor problems and loss of bowel and bladder control emerge. This delayed presentation of symptoms is related to the degree of strain placed on the spinal cord over time…In children, early surgery is recommended to prevent further neurological deterioration. If surgery is not advisable, spinal cord nerve roots may be cut to relieve pain.”

Then there was the swift kick to the gut as the website continued, “With treatment, individuals with tethered spinal cord syndrome have a normal life expectancy. However, some neurological and motor impairments may not be fully correctable.”

Normal life expectancy? When did we go from not peeing enough to a normal life expectancy as if her future was ever in doubt?

You can imagine that Verna was quite upset and unnerved. As she said in the car on the way home, “I’ve had enough happen to me for our entire family. We should be immune from anything else.”

She was referring to her treatment for breast cancer in 2006, a condition that was diagnosed while Verna was 35 weeks pregnant.

The first step is for Maya to have an MRI to confirm or not the tethered spinal cord. The problem with a pediatric MRI is that no preschooler is going to lie stationary inside a rumbling and dark tube for 20 minutes, so they would have to sedate her with a general anesthetic.

If the condition is present, Maya would need surgery on her lower spine. When we shared the news with Miguel, his first response was, “Is Maya going to be paralyzed?”

I know these leaps of anxiety are essentially useless, but it is quite normal for the mind to wander and consider the various scenarios that could befall loved ones when major surgery could be on the horizon.

Yesterday was kind of a weird day, part blur, part the mundane rhythms of daily life. At first I was upbeat, but after discussing things with Verna I started to feel doubt and panic gnawing at me. Then I watched Maya frolic with our neighbor Luca, who is almost three, and I couldn’t fathom how anything could ever be wrong with her.

Luca brought out his Frisbee, which he and Maya played with for close to half an hour. They chased each other and the Frisbee, laughing wildly, and tossing the disk into the bushes and tall grass at the edge of the park.

Verna and I were talking to Luca’s mom, Erica, who just returned to not exactly full time work as an elementary school teacher, as Maya and Luca gently tackled each other and played completely on their own.

How could there by any problems with the illuminated spitfire who attacks life with zest and a joyful and sublime abandon?

Life is fragile, I know. Verna’s cancer taught me that or reinforced the notion in me. But the possibility that Maya will have to suffer at all when she should just be frolicking through life is enough to make me want to break down and sob uncontrollably.

I guess it’s one step at a time. First the MRI, then we see if the problem exists. Worrying about something that isn’t definite is pointless, but, then again, fretting may be part of my heritage and familial legacy, something coded into the deepest recesses of my DNA.

We can’t escape our biology; we can only hope that life works out well more often than not.

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