Life on the Transplant Roller Coaster

Moreena at The Wait and the Wonder writes about the helplessness of passengers in the medical roller coaster here and here. I came to her post by way of Melissa at the Lilting House, who wrote a post here sharing her experience about waiting for a diagnosis for her Wonderboy.

So of course, after reading those, I got pulled into the Pediatric Grand Rounds. I ended up pulling another half-all-nighter, which is why I visit Moreena's blog only when I know I can afford to sleep in a bit next morning.

Moreena writes honestly and beautifully about the ups and downs of living with medical suspense, never knowing whether the next day will bring a glorious swoop towards the sky or a heartstopping plunge towards the core of the earth.

She writes about the chronic worry that is part of the deal of loving a chronically ill child as opposed to a healthy one, even if it's true that life is uncertain and health can turn to illness in a second:

Look at it this way: One guy is walking down the sidewalk, going home from work as he does every day. Unbeknownst to him, a piano being wenched into a 3rd floor apartment is about to break loose and fall on his head. Or maybe a stray bullet is about to strike him in the chest. Or maybe a driver coming along just behind him is about to have a heart attack, jump the curb, and run his car over this poor unsuspecting pedestrian. One of those horrible things is definitely going to be happening in the next 2 minutes.

Another guy is walking down the street on a military patrol, as he does every night, in a country currently experiencing a violent civil war.

The first guy's chance of dying in the next 2 minutes is 100%. The second guy's chance of dying in the next 2 minutes is, let's say, 5%. But which one is most likely to be experiencing extreme anxiety, fear, worry, nervousness, stress? Of course, the 5% guy.

Anyway, I usually don't post about Aidan and his past here on this blog. Usually when I do, to tell the truth, it's because of something Moreena's written ;-), for example, here and here. I don't think this blog, which is basically about homeschooling a crew, is exactly suited to the medical epic genre. So all this is to say I'm starting a new one -- here. I'll still have Aidan's special education stuff on here but the other blog will give me more freedom to talk specifically about Aidan. I'd like to have a way to get those memories out on a screen, both so I can have them retrievable someday and so that I can deal with some of the things that keep me awake at night when I think of them. Also, since neonatal hemochromatosis is such a way-out-there disease, though not quite as rare as this one, I think maybe it's time to have my own little waypost of experience on the web somewhere.