Monday, November 18, 2013

Shared Pain

The problem with being part of a community means that the community's problems -- and pains -- become yours.

For years, I've been part of the greater special needs blogging community, but for the most part, the blogs I read deal with kids who are like Adi in that they are generally healthy. That's something I've always been grateful for, of course. And it's not that I think (or, heaven forbid, SAY to someone), I COULD NEVER DO THAT, because, duh, if that's what happens, then you suck it up and get the job done because no one gives you another alternative. I've just always been glad that we didn't have that additional burden. No oxygen tanks, no daily syringes to prepare, and so on.

Ha. Ha. Ha. Ha. Ha.

OK, so now that we are firmly ensconced in the world of MEDICAL ISSUES and ILLNESS, there are different blogs to read, different stories to hear. And these stories are hard to hear. They are hard to live, in a way that special needs (or at least our experience with special needs) is not. I mean, please, don't get me wrong, special needs sucks, yo, but leukemia is a WHOLE NEW LEVEL of suckage.

When I read about Superman Sam, I could feel something breaking inside me.

"So why do you read blogs like that?" people asked me, as I told the story.

"Because I have to," I said, but they don't get it. I can see that they don't get it, that they think I should just keep my head down and focus on my son, but that's not the way this world works.

Yesterday, we went in to the hospital for what I knew would be a long day. We were there at 8am and had blood drawn a few minutes later. It took a full four hours to get the lab results back, and another three hours for the blood to arrive from the blood bank (WHICH IS NEXT DOOR), and another HOUR after that for the doctor to sign off on the day's chemo, so we were at the hospital for ELEVEN HOURS yesterday.

After many, many hours of waiting, Adi was given one of the THREE beds currently available to patients on the makeshift outpatient ward. Some time later, we were joined by another family, a beautiful 2-year-old and his parents. We've seen each other around the ward, and we've exchanged pleasantries, but yesterday was the first time that I really spoke with both parents.

After EIGHT YEARS of infertility treatments, they finally managed to have their son. And now he has leukemia. And his mom and I just sat and talked and cried, because WHAT THE HELL, UNIVERSE? WHAT THE HELL?

As much as the doctors tell us not to compare stories with other parents on the ward, as much as they tell us not to google side effects and symptoms, not to read the full protocol, not to compare our kids to the case we read about in the obscure journal -- we do. We HAVE to. We can't sit idly, watching, not thinking, not feeling, not engaging for the months and months of treatment. We seek each other out. We compare notes. We share tips. We get advice.

And we share each other's pain, because we are the only ones who understand. We are the only ones who know how hard it is, to carry around this fear, to calculate and recalculate our odds, to wonder if lightning strikes the same place twice, or more, or if we will be lucky enough to find a tiny shelter where we can wait out the storm.

It hurts so much to share the pain of other parents. But I think it would hurt even more if we tried to do this alone.


Crystal T. said...

Exactly! I read the info about Superman Sam because I felt like I owed it to that boy and his family. He needs to be remembered. Somehow someone needs to find a way to fix this cancer problem - or at least lighten the burden. It feels like a weight around my neck all the time.