Wednesday, August 13, 2008

De-gunk

Today men are working on the sewage line in front of our house. With a small excavator, they have torn up the road and with something that looks like a firehose attached to a generator, they have pumped out enough orangish clay to uncover two sewage lines. One is leaking; one formed of its own accord and needs to be re-sealed. This is not, in and of itself, interesting, I know. But I had told a few people just yesterday my reason for blogging was to get the "crap" out that is clogging my brain. And though I was not planning to blog today, the living metaphor in my front yard is compelling. I didn't even know there was a sewage line rupture in our yard. Just as I have been going through the daily routine, afraid to think about what's under the surface. So, out with it already:

In January, my eldest had an MRI done of his brain. He had been falling more than usual and his already limited speech seemed to be regressing. Two years prior he had been diagnosed with epilepsy and we thought that maybe the symptoms were related to uncontrolled seizure activity. We adjusted his medication and still no improvement. We did an overnight EEG at Children's Hospital in New Orleans and the good news was that there was no recorded seizure activity. The bad news was that there was slowing in the brain on the right side. So we scheduled the MRI. The child had had at least three MRIs of his brain from the time he was an infant and none had shown anything noteworthy. In fact around the time of his initial diagnosis with the seizure disorder an MRI had been done that looked somewhat normal. I was skeptical that an MRI not even three years later would show anything. But I was also afraid because I had the feeling that something was wrong. There's something to that "mother's intuition" thing.

So an MRI in Janurary of 2008 showed atrophy of the cerebellum. That would explain the balance problems, the speech regression, and the greater difficulty with coordination. When the doctor came in to discuss the scan, she warned to not look up the diagnosis online (as she knew I would do and did do anyway), but that she thought it was SCA (spinocerrebellar ataxia). This was a progressive neuromuscular disease. A progressive degenerative neuromuscular disease. He is going to lose more and more abilities until finally after he can no longer walk, swallow, or talk, he will die, most likely from breathing complications sometimes heart failure. He could live 4-5 years or he could live 40 more years. Different types of SCA work at varying rates. We would repeat the scan in 6 months to determine the speed with which his cerebellum is dying. As if that were not enough for me, when asked if I wanted to see the MRI myself, I assented.

I will never forget that image as long as I live. I know tragedies happen daily. Last week, a beautiful little eight-year-old was killed in a golf cart accident. Another 11-year- old the week before died from an incurable form of leukemia. Men, young men, with families and potentially long lives ahead of them are killed in Iraq, Afghanistan, and other war-torn places daily. I know. But this, this was my "tragedy"; this was my son. My delightful, often hard-to-manage, but always lovable son. Not only was he not going to outlive me, he was going to suffer. The cerebellum which normally has a cauliflower-like appearance looked like an oak tree in winter. Too much space. The neurons which typically renew themselves were refusing to do so. My son with the limited self-help skills would sooner or later have no way of helping you help him. Again, I know. I know that there are some precious children who are born without the ability ever to walk or to talk or to eat. I know that I should be glad he can do what he can do now. I should focus on the present. Live in the now. There is no future to the other way of thinking. Literally.

So, the repeat MRI--July 8th, a little over a month ago--showed no significant change. Thank the Lord, though his brain is still dying, it's slow going. Blood tests did not confirm SCA. So there's no label for this one. No way to pin down a prognosis. The only thing to do is live now. Love now. Smile now. And forget about labels for now.

1 comment:

Anonymous said...

wow. very powerful ginny. i just want you to know i grieve with you.