My son is eight years old, and he is not like other little boys his age.
At the age of eight, my son is blind, nonverbal, unable to walk or feed himself, and when up, uses a wheelchair. He was born with a little-known medical condition known as Pelzaeus Merzbacher Syndrome (PMS); it is similar to diseases like Tay-Sachs, Canavan, and any of the "leukodystrophy" type of disorders. It is a slowly progressive dysmyelinating disease, for which there is really no known treatment or cure.
All one can do for a child like mine is to keep him comfortable, take care of his needs, as best as we possibly can.
At birth, Ethan was like any other baby: he smiled, laughed, cooed when spoken to or held; however, he had trouble tracking with his eyes, and he couldn't seem to learn to hold his head upright: it was as though his head was too heavy, too large for his body. It worried us, so we took him to our pediatrician, who suspected something neurological was going on.
When he had all of his tests (it was one of the most painful times in our lives), the neurologist suspected something major was going on, so he sent us to a specialist dealing with neurodegenerative disorders.
More tests, more needles, more pain for our son. It was hard hearing him scream as he was poked, prodded, stabbed, x-rayed from stem to stern. It didn't prepare us for the major blow that was surely ahead. That was when the doctor diagnosed him as having Pelzaeus-Merzbacher Syndrome, which we had never heard of.
It was serious: so serious, in fact, that our son would eventually lose his muscular, verbal, visual, cognitive skills. In time, he would become helpless, unable to do anything for himself. The onset could start in as little as a few short months to a period of several years; there were no guarantees as to whether Ethan would survive to the age of five years.
In short, the doctor was telling us that our son was going to die, and before he did, he would end up becoming nothing more than a vegetable.
Now at the age of eight, Ethan Ray has lived longer than what doctors first predicted; however, he needs twenty-four hour medical care. He cannot eat without help (he's fed by a tube that's been placed into his stomach), and he is unable to go to the restroom on his own. Every four hours he has to be given medication to prevent gastric reflux, seizures, infections; sometimes the best treatments don't help, and he ends up in the hospital with another overwhelming infection or breathing problems.
He's had everything from heart attacks to strokes, and there's no guarantee what next week, next month, next year, might bring. He could be dead, or else he could linger for however long God allows him to.
Caring for a child like Ethan is difficult. I wouldn't wish it on anybody. Sometimes it gets so bad, the stress, that I wish that Ethan would die, so he wouldn't have to suffer anymore. I get angry at him because he can't do anything but lie there, and that is no way for a bright, beautiful little boy to live. I see other children his age playing, running around, or screaming delightedly, and I can't help but to cry.
To ease the burden of medical costs, we have nurses come every day to give my husband (Rich) and myself a break, and it also gives us time to spend moments with our other two children, nine-year-old Missi Nichole and 11-year-old Erich Bryan. Sometimes we go on small vacations, just the four of us, so we can get away from our sick child. I know that sounds mean, but we all need a break from all of the worries, the stress, generated from caring for a child with such significant special needs.
The nurses all do a wonderful job, and if there's ever a problem, they call, let us know. Then we come back home (or go to the hospital), to spend time with Ethan. We try to include him in what we do, but we hate seeing him in this condition, hate the stares from others, hate the comments we hear on a day to day basis.
I will write more about Ethan in a little while; right now his nutrition pump alarm is sounding off. Maybe the tube is kinked again; that sometimes happens. Take care and may God bless you! Just keep us in your prayers; we can really use them (especially when Ethan is sick and/or is in the hospital again)!
~Written by Judy Reichart, mom to Ethan, Missi Nichole, and Erich Bryan.