The Unusual Reasons I Owe My Son's Disorder a Thank You
I know. I didn’t expect for me to say that either. “Thank you?”
I don’t know. Something about that thing where time does something and things get easier and the hate kind of dissipates and this weird level of acceptance rolls in that you never, ever in a million years thought would arrive, but here it is. KUM-BA-YA!
Oh, Citrullinemia. Nearly seven years have passed by since I first heard your name. Seven years since I first had to spell it out for a nurse… three times. “Wait, C-I-T-R-U-wait how many L’s?” That’s plenty of time to see the silver lining around things and plenty of time to learn a few lessons. And while I can’t speak for Corrigan, my son, the actual person with the disorder, I can speak for myself and the things my son’s urea cycle disorder (UCD) has taught me to be thankful for.
Off we go now…
Thank you, Citrullinemia, for reviving my math skills. I distinctly remember whining in math class, “…But I will never use this in my middleweight championship boxing career!” Up until Corrigan’s birth in 2008, I was right. But now, I have to calculate and measure and chart and well, uh, that’s about it. Fine, I lied. I use a calculator.
Thank you, Citrullinemia, for honing my city driving skills. Prior to your arrival, I never needed to drive in Baltimore traffic. But thanks to you, UCD, I am now proficient in quick lane changes, long traffic jams and screaming at people in souped-up Honda Civics.
Thank you, Citrullinemia, for ridding me of my fear of bodily fluids. Before you joined our family, I had lived my life through my early 30’s with only one personal experience with a stomach flu and a couple of heaves over the porcelain pot from morning sickness. I had raised a boy for 10 years who, himself, never had a puking virus. Ever. I had lived a gloriously vomit-free life until you walked through the doors, UCD. Now, I can catch a torrent with my bare hands and not even flinch. (Ugh, I know, did I have to type that? Yes, yes I did. You know why? Because my kid cannot just throw up — he has to throw up into something so I can calculate the volume loss. I have to know precisely how much goes into and out of his body. It ain’t pretty, but it’s life.) I’m so casual about bodily fluids now, I would have made an excellent nurse. But alas, I loved the boxing ring too much.
Thank you, Citrullinemia, for teaching me how to sleep with strangers. Before 2008, I would rather have eaten a bag of hair than share a sleeping situation with someone I didn’t know. But once UCD arrived, there I was, sleeping four feet away from a strange man, separated by only the flimsiest curtain. And who knows how many people come in and out of my son’s room at night and see me spread out, half on and half off the most uncomfortable piece of furniture laughingly meant for sleeping. Who knows how many have seen me snoring and braless with my mouth wide open. Well, I’ve learned to forget about vanity.
Thank you, Citrullinemia, for teaching me to speak up. Way back when, I was content to drift through life without confrontation. I once purchased a defective and expensive vacuum cleaner that barely worked for a week before breaking. I needed a vacuum cleaner, but I didn’t need some lady at the Customer Service desk asking me what was wrong with the vacuum. I mean, what if she looked at me in an angry way or something? Content to sweep the floor with rolled up balls of packing tape, I went on with my life until my best friend forced me to go with her and return the darn thing. Even then, I made her do all of the talking, so deep was my belief in being the weeniest, most complacent human being on the planet. Then, UCD came along and suddenly I was yelling at doctors (well, intern, she deserved it), writing letters to people who might be able to help with mind-boggling lab mistakes and barking at the housekeeping staff for knocking at 10:30 p.m. to change a trash bag. I’m out of control. I blame UCD.
Thank you, Citrullinemia, for helping me to appreciate the smallest victories. Prior to the diagnosis and learning exactly how impacted my child’s brain was from the disorder, I scoffed at the “everyone gets an award” way of life here in our country. I fought hard for every middleweight boxing belt I won, and I didn’t like the idea of my competitor getting a prize just for showing up. Why would I want that for my children? Then, along came brain damage and developmental delays and life-skill struggles. Suddenly, I am the mom ordering a dozen 3-inch plastic “Made in China” trophies to give to my brave boy for things like “eating two cheerios” or “not yanking out your g-tube button today.”
Thank you, Citrullinemia, for making me silly. Before, I was too serious and too worried about what other people thought to live my life in an authentic way. I would hear my mother’s voice reminding me to “be a lady” in all that I did, and I was afraid to upset things. Living like that made me forget how to laugh — how to revel in a simple pun or a gross joke. Perhaps it was the years and years of poor personal nutrition while I learned to deal with this new life, the months and months of sporadic sleep or just staring down at my sick child, covered in wires and surrounded by machines, that made me lose my mind just a little, because now? I laugh. I let my husband crack a joke in situations that might not merit one without getting upset at him and poking him in the ribs with my elbow. I laugh whenever I can and swim around in a pool of silly as often as possible.
Which reminds me, I should probably go ahead and admit I was never a championship boxer. I mean, this UCD stuff kind of forces you to put on the gloves and bounce back and forth on nimble feet, ducking the punches as they come flying, but I’ve never entered the ring. That was silly of me to say. I did, however, work retail in a mall kiosk for 17 years, 17 long Black Fridays, so… same thing?
Anyway, that’s all I wanted to say to you, Citrullinemia.
Thank you, you stupid, sneaky, frustrating, insidious, genetic jerk.
(I love that Corrigan looks like he just read the above post and was like “Oooooh, Mommy went there.”)
This post originally appeared on Mooney = MC2.
For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Want to celebrate the human spirit? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.