A letter to my child’s disorder

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 post tocommunity@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Dear Citrullinemia,

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 in things and plenty of time to learn a few lessons.  And while I can’t speak for Corrigan, the actual person with the disorder,  I can speak for myself and the things that UCD have 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!” and 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 or DC traffic, in fact- if I were not on a school bus with 52 other car-sick 4th graders on a field trip to the Baltimore Aquarium, there was likely not going to be a time I was down in that rush-hour mess but thanks to you, UCD, I am now proficient in quick lane changes, long traffic jams and screaming at people in suped-up Honda Civics.  Also, spell-check wants me to use “souped-up” what in the world? My life has been a lie.

Thank you, Citrullinemia, for ridding me of my fear of bodily fluids. Before you joined our family, I had lived my life up through my early thirties 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 ten years who, himself, never had a puking virus. EVER. (I know!)  I had lived a gloriously (mostly) vomit-free life until you walked through the doors, UCD, but now I can catch a torrent with my bare hands ( 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 that 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.) and not even flinch.  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 have rather ate 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.  Convinced that I would loudly expel trapped air in my sleep, or worse yet- yell out for my Mommy during a particularly odd dream- I spent the long hours staring at the ceiling and listening to the kid in the other bed’s Dad whimper in his own sleep and laughing about it quietly. (hypocrite, I know)  Throw in the who-knows-how-many-people come in and out of my child’s room at night (the rooms are all singles now, thank you thank you thank you!) that see me spread out, half on, half off, of the most uncomfortable piece of furniture, laughingly meant for sleeping, on the planet…mouth wide open, snoring and braless- 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 would have 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 most weeniest, complacent human being on the planet.  Then UCD came along and suddenly I was yelling at doctor’s (well, intern, she deserved it), writing letters to people that might be able to help with mind-boggling lab mistakes, and barking at Housekeeping for knocking at 10:30pm to change a trash bag.  I’m outta control. I blame UCD.

Thank you, Citrullinemia, for helping me to appreciate the smallest victories.  Prior to 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 delay and life-skill struggles and 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.  I was too serious before.  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 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 is the years and years of poor personal nutrition as I learned to deal with this new life, or months and 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 but 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 I swim around in a pool of silly as often as possible.  Which reminds me, I should probably go ahead and admit that 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 ….SEVENTEEN 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.

photo (6)

 ( I love that Corrigan looks like he just read the above post and was like “Oooooh, Mommy went there.”)

 

 

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