I have a problem.
I understand that this is not as exciting to hear as “I have a dream,” or “I have an unlimited number of free passes to the Blazer game” or even “I have an old bag of Pop Rocks in my purse,” so please try to check your disappointment and bear with me. My problem is as follows: at some point when cultivating a new friend (or reacquainting myself with an old one), I have to mention Malcolm’s whole…situation. I don’t mind saying that I have begun to heartily dislike the process. Not because I don’t want to talk about it, mind you. I have no issue discussing the matter. My dislike stems from the inevitable ‘frozen look of horror’ that I receive. For those of you who have never been on the receiving end of one of these beauties, imagine the ‘frozen look of horror’ as a startled, panicky grimace mixed with a hearty dose of pity and just a dash of embarrassment. It is invariably accompanied with a mumbled “I’m so sorry.” And sometimes even an occasional tear.
I totally understand that this is a natural reaction to hearing that a six-month-old baby has already had four surgeries, been cut open in 12 different places, and spent a quarter of his life in the hospital. I get that, I really do. It is utterly horrifying, when you think about it that way. But you know what? I DON’T THINK ABOUT IT THAT WAY. This is my normal, everyday life now, and to me it is normal and everyday. Frankly, I’m pretty sure that Malcolm and Penelope are going to grow up thinking it’s weird that every little baby boy doesn’t have a cute little (okay, huge) zipper scar on their chest.
My point is, I don’t want people to feel bad for me because I don’t feel bad for myself and – more importantly – I don’t feel bad for Malcolm. Receiving pity and concern just makes me feel kind of squirmy and weird. And guilty. I always start thinking about families that are actually suffering. Families that are literally starving to death, or which have lost multiple children or are raising children who will never reach adulthood. I feel bad for those families, and if I’m ever in their shoes, you better believe I’d consider feeling bad for myself. Similarly, if I got caught in a zombie apocalypse, I would have no qualms about indulging in a few existential ‘why me?’ sob fests. But for now, I’m doing just fine. Mal is going to be okay eventually. He’s a lover and a fighter.
I recently joined a support group for families of children with congenital heart defects, and I learned two very interesting things in the process. Number one: sharing a physiological defect with someone does not mean that you have anything else in common with that person or their families. And two: my family doesn’t need a special support group because we are already pretty darn supported. Really! Dustin and I have four able-bodied parents who have put their lives on hold to help out with childcare. I have several amazing girlfriends who will listen to me whine whenever I feel the urge. Malcolm’s got a plethora of surgeons, doctors, dieticians, and other specialists who are just a phone call away. We’ve received financial assistance from the state of Oregon, from the hospital, from fund raisers and even from complete strangers. So, you know something? We’ve got it easy. Sure our life is hard sometimes, but everyone’s life is hard, sometimes. Someone has to clean the toilets at the airport. Someone has to handle the tarantulas at the zoo. And Kanye West actually has to get up every morning and continue to be Kanye West. Food for thought.
So by now you might be asking yourself “What is the overall purpose of this blog? Why did I just read through this amazingly well-written rant? What can I take away from the experience?”
It’s simple. Primarily, I want to say “thank you” to everyone who has supported me into my current state of normalcy. Thanks to everyone who has brought a meal, or dropped by, or taken me out for a sanity-preserving coffee date, or prayed for Malcolm (and for Dustin and Pen and I). And perhaps more to the point, I want people to feel free to inquire after Malcolm (or me) any time they want. Please don’t feel bad for us. Or if you do, don’t put on an awkward, sad, frozen-fish face, because that makes me feel bad! If you’re curious, ask me questions. Seriously, ask me. Talk to me. Laugh with me. Bemoan the high cost of milk with me, if you want. You don’t even have to use a hushed tone, I promise.
In short, let’s just agree to leave all the pitying to trained professionals, like Mr. T.