Last we heard, Jayne was performing excellently on his blood tests, showing no signs of the cancer rearing its ugly head. His immune system has also been recovering, however slowly, giving us hope that, one day, he will be allowed to a normal child yet again. He has shown no signs of complications from the chemotherapy that he had to endure last year; his growth and development are still going strong and he seems to be learning something new every other minute. My one fear that Jayne wouldn't be able to develop on a social level anywhere near the same pace as healthy children his age, have proven to be a bit too pessimistic. Sure, Jayne can't do many things that kids can do. He can't go to the park, he can't spend a bit of time in daycare, he can't get on an airplane, and he can't go to Disneyland. This last is probably the most egregious deficiency in our young man's life. And not just because his parents are in desperate need of some time in that paved over orange grove. He's not quite at the age where he would remember the trip with any sort of clarity but he does have a sense of wonder and enjoyment that would absolutely benefit from visiting Disneyland. Ah well, maybe in five years, kid.
Of course, all this talk of what Jayne can't do after his struggle with leukemia alights upon something that Jayne will never be able to experience, as I did when I was growing up. On April 17th, my grandmother, Grace Dix, passed away after several years of engaging in her own struggle. In her case, the looming and terrible monster within was dementia. I have a lot of emotions tied in with the passing of my grandmother, whom I considered to be a very excellent woman. A good chunk of my childhood memories are wrapped up in my grandmother's house, full of porcelain dolls, asian art pieces, and the ubiquitous little dog. When I first heard from my mom that Grandma Dix had passed away, my initial reaction was that Jayne would never get to know her. And, due to her illness, she would never know that her great-grandson had kicked cancer's ass at such a young age. She wouldn't get to know how brave he had been; how strong, and how charming he was through all of it. He would never have the opportunity to call her Grandmama. And while I understand that those sentiments are a bit far-fetched, because of the age difference and the ravages that the brain can do to itself, it is still the hardest reality to accept. I spoke at her funeral, I helped bear her body to her final resting place, and I said my goodbyes, until our atoms all recombine an unfathomable amount of time hence. And I suppose, in keeping with the cyclical nature of life and death, Jayne does, on very rare moments, do some things the are very reminiscent of my grandmother. They would have been pals, I'd like to think.
Well, that really brought the room down, didn't I? I apologize. I've wanted, needed, to get that off my chest for about a week or so. In truth, that's what really spurred me on to write this and not put it off continually because my son thinks all keyboards are his to toy with. Long in coming though it may be, the timing works out, considering our current circumstances. As I announced to everyone last go around, our next (and final) child is fast approaching us. Sometimes, much to our great joy, at other's... more to our chagrin. Either way, Jayne's sister is rapidly coming to spoil his paradise known as sole focus of attention. And, preceding that joyous occasion, as is usually the case, is a series of potholes. The largest of these appears to represent a rather large, and blue, shield and cross. Attached to the bottom of these, is a rather inconvenient bill.
For two months, we have been fighting with our newly acquired insurance company to recognize that the hospital that helped Jayne purge every trace of cancer from his body is also the best place to take him for every follow up visit. This has caused no end of stress, frustration, despair, and desires to just say "Fuck it!" and move somewhere with a comprehensive healthcare system. I'm not going to use this opportunity to get political, this is neither the forum nor the appropriate time for it. I expect the rest of you to follow suit. What I am trying to say, though, is that our little unit is in a bit of a bind. We can only play with the cards that we are dealt and while genetics did truly and utterly screw us, we have to make do as best we can. In so saying, I would need to be committed to a state hospital if I would let my pride harm my family in anyway.
After the superhero mayhem that sponsored Jayne last June, all of the shirts and wristbands were donated to us by the organization that put the entire fundraiser on. On top of the money that was raised and matched, it was incredibly generous. That said, what exactly do you do with two hundred of the same shirt? I propose that you, yes you, buy one. The wristbands are orange and declare, "The boy they call Jayne!", the rallying cry of the Superhero Mayhem last year. The t-shirts have a little bit of lyrical poetry about Jayne on the front and sponsors of the run on the back. In addition to being stylish and cool, they are fairly comfortable as well.
If you would like to continue to help Jayne with his frequent hospital visits, or just get some cool additions to your wardrobe, the shirts will be $15 a piece and the wristbands will be $3 for one or $5 for two. I can't promise that this will be the last time I bring this up, but I do promise that I will try not to shove it down your throats at every opportunity I get. After all, you're probably more interested in our growing little boy. And why not, he's pretty freaking adorable.
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