Saturday, January 14, 2012

Why I will never put a ribbon on my car

I feel like it's ironic that I start off this blog entry somewhat upset over someone else's blog. I really don't know why (I should REALLY have learned my lesson about the internet by now, shouldn't I?), but after your Dad and I got home from yet another tour of yet another wing of the hospital where you'll be born, I stupidly started poking around online for pictures of kids after they've had the same surgery you'll have. I found a picture on the personal blog of some dude in his mid-forties who was born with the same condition as yours, and while it's sure nice to hear that he's doing well, this poor man's entire existence seems to have been reduced to the fact that he has a congenital heart defect. Seriously? The last thing I needed to read after this afternoon was some kumbaya-singing inspirational rambling about "overcoming adversity" and "taking every day as a blessing." For no good or fair reason, this guy was born with something wrong with him, and he has clearly spent way too much time focusing on that fact; is that really enough to make a person?

This afternoon, we got to see the NICU again (which really is a beautiful facility) but also the PICU (perinatal ICU) which was...well, crappy. All things considered, it's a collection of glass shoeboxes with harsh fluorescent lights, an open door to the massive monitoring station in the center of the room, and to make matters that much worse (or weirder, or something) it's apparently used as overflow for the cardiac ICU. There were only two children in a ward of twelve or so tiny "rooms," only one kid small enough to be in a crib, and about eight or so adults, most of them in extremely rough shape. There are no chairs, no visiting space, and no privacy. They don't allow sleep-ins when there is any equipment in the room, so your Dad or I won't be able to stay with you for a few nights after your first surgery (which, as far as I'm concerned, is a load of horseshit, but not negotiable due to physical space restrictions), but as soon as you're off a respirator, they can wedge a cot in there. How charming. A cot. This is where you'll spend an estimated week after surgery before being moved to a regular room in the children's wing, and I'll be honest; even after seeing a photo of what your incision will look like, how puffy and unwell you'll look immediately after the operation, and how completely covered with tubes you'll be, I'm also more unhappy with where you'll be and the fact that being there seems so forbidding. This is where the best nurses for you (and arguably some of the best nurses at the hospital, which has an exceptional reputation for cardiac care) are stationed, so it's definitely where we want you to be, but what a shitty place to spend the first week or so of your life.

What has me upset is the fact that we've already been marked as a "heart family." For now, this is a vital adaptation, to be sure, because it labels us as we need to be labeled in order to access the care, people, and resources we need, but long-term, can't we just be ourselves? How can this blog-dude so gladly adopt THIS as the focus in his life? He goes to conventions and regional meetings and such for other adults with congenital heart defects, participates in tons of medical studies, and generally seems happy to devote all of his time to just BEING a person with a heart defect. Growing up with a father with a very specific medical condition that has been a pretty majorly occupying focus for the family, I do get it: people need support and validation when a medical problem is a huge part of life. It's healthy to look to others who share your challenges for support and inspiration (if that's what floats your boat), but to turn oneself into a poster child for a cause do I say this nicely...creepy?

I don't want to be one of those families that ends up pigeonholed into only having relationships with other families whose lives have been impacted by heart problems. I refuse to limit my friendships with other parents - to say nothing of your friendships with other kids - to people who have "faced adversity" like we have. I know it's probably not going to win me any friends if I speak ill of people who lovingly and openly support medical causes, but I just can't let myself, your Dad, or you turn into one of those people. This will obviously be a major part of our lives; hell, it's majorly impacting the start of yours and our experience having you in ways that I honestly can't help but be furious about on some levels, but that is all the more reason I refuse to let it shape my identity or yours. There will be no ribbon magnets on the car, no cheering at some walkathon, no fundraisers, and sure as hell no inspirational t-shirts. We'll celebrate you for the accomplishments you choose, and the achievements our family creates for ourselves. Batman, you're always going to be more than a heart condition.

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