I was crying on the couch beside my husband with my computer in my lap when Gabe came into the room. He should have been asleep; it was an hour past his bed time, but he was procrastinating to try to stay up as long as he could.
"Why are you crying?" He asked.
I paused for a moment, not sure whether I should answer him honestly or if I should just tell him that I saw something 'moving'. After all, I'd cried at a Jason Mraz music video, to my ten year old son's consternation, just the other day. It would be nothing new to him if I said I was crying over a video. In the end, I chose to tell him the truth. You see, we had just been celebrating great news from Gabe's neurologist and the results of his first eye exam. Gabe's Bone Marrow Team nurse had called earlier in the day to tell us that Gabe's latest MRI was normal and that Dr. D was thinking that he would do another MRI in 3 to 4 months and then may be comfortable spacing the MRIs out to every 6 months. This is great news for Gabe! It means that the BMT doctor is starting to worry a little less about his brain and how rapidly the disease could be progressing.
I've mentioned in previous posts that, even though ALD is caused by a mutation on the same ABCD1 gene in all boys (though not all boys have the same mutation. In fact, Gabe and I have one that was new to the database), it has a few different phenotypes and, even between identical twins, the disease may progress radically differently. No one knows why this happens. There may be some modifying genes at play, but no one knows what those are yet. Because progression, especially in children, can happen suddenly and be rapid, Gabe's BMT team has been ordering MRIs about every three months. If they spot any lesions on the MRI, Gabe will get a bone marrow transplant immediately with his big sister as the donor.
Gabe seems to be closing in on the upper age range for developing childhood cerebral type, the worst form of ALD. He could still develop cerebral involvement as a teen or an adult, but adult-onset tends to be more slowly progressive. I don't think we will ever be able to stop worrying, but we can start to worry a little less as time goes by. And it appears that the BMT team agrees as they are almost ready to move from 4 MRIs a year to 2.
Gabe's first visit eye exam went very well, too. We'd been told after his neuro work-up that he had some slowing of his left optic nerve that was typical of ALD boys. The optometrist told us that he is a little far-sighted, but that she was reluctant to have him wear reading glasses yet unless he starts getting headaches. From her end, his eyes and his optic nerves look healthy. So, all in all, we got some VERY good news.
So, why was I crying on the couch?
Another mother in our ALD support group, I explained to my son, just got her son's MRI results back, too. They weren't as good as his. We were very lucky, I told him, or blessed, or both that we live so close to Duke and that he had been diagnosed so quickly. The other family, I told him, has two sons who are close to his age. They only just found out that their sons have ALD and by the time they found out, their MRIs already showed lesions. I was crying, I told him, for their family.
"What would have happened if I didn't go to the hospital when I did?" He asked.
"When you went to the hospital, you were having an adrenal crisis. Your body was shutting down. If you didn't go, you would have died. We were lucky that, even though they thought it was just the flu, they checked everything and found out that you have ALD."
"So, I was dying when you took me to the hospital?"
"In short, yes.There have been other boys... other mothers I've talked to, who lost their sons during an adrenal crisis and only found out afterward that they had ALD. We were very lucky."
Gabe looked taken aback at first, then seemed to mull that over for a minute. He hugged me. "That's why I have to save other people when I grow up."
I was really touched by this and I understand and share the sentiment. The help my family has received from the medical community and the support from family and friends is a major motivator in my working in EMS. I want to give back. Lately, Gabe has started telling everyone that he wants to be a pilot and a Paramedic. Maybe even a flight medic.
Then, my sweet little blue eyed boy grinned and said the most little BOY thing possible before dashing off to bed. "Wait until I tell my friends at school tomorrow! 'You know that time I was in the hospital? I was dying!'"
It may be a macho thing for him to brag about his brush with death to other boys on the playground, but for so many other families, it's a heartbreaking, nightmare of a reality.
I never (well, almost never, anyway) ask "why me?!" One of the things I learned from Buddhism is to never ask why ME, but rather "why NOT me?" What makes me - my son, my family - so special? Nothing.
Nothing.
My step grandmother, Connie, used to tell me, when we spoke of someone who was suffering (or even just annoying) "There but for the grace of God, go I. " It can be very hard at times to be part of the ALD family support group. I am grateful for the other parents and for the space to share our experiences and support each other, but there are days when I am so afraid for Gabe and reading about another family's loss makes it almost unbearable. I shamefully admit that some days, I scroll rapidly past their posts because I just can't bring myself to read them. I'm too scared. There are more days, though, when their stories are a connecting thread. When E posts about her son's latest "clean" MRI, her family is a symbol of hope that one more boy is beating this horrible disease. When K posts about her struggles with the healthcare of her son or a rough, sleepless night, I am strengthened by her strength. I celebrate their triumphs and I grieve for them when they have set backs and losses because there, but for the grace of God, go I.
There is no separation between them and me, their sons and mine. So, it is hard to celebrate and be happy that my son is, so far, relatively okay when another family hears that their son is not. There's no special diet that we feed our kids that they didn't. There's no special healthcare or life-style choices that we chose to follow that gave us "an edge." We aren't more pious, more worthy, more earth-centered, or more altruistic. There's nothing that we did that they didn't do. It just is what it is. We are grateful to our bones that Gabe's MRIs are still clear, but we weep for the boys whose MRIs are not. For the boys who are diagnosed too late and the ones who progress so fast. I pray with all of my being that my son's health holds, for newborn screening, and for a cure. Lord, bless our boys.
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