May 3 2017

The award goes to…

Parenting is a hard-enough obstacle for anyone, let alone someone facing an incurable chronic illness. The course is filled with roller-coaster highs and limbo lows. One second you think you have it all figured out, the next you are sitting against the bathroom door crying as little tiny hands reach underneath for you. I find it hard enough to take care of myself most days, so adding in two wily full-of-energy toddler boys makes for some interesting and stressful days.
Take the other night for instance, when the whole house was suffering from a horrible stomach flu. Jon was in the other room trying to sleep, it was way past the boys’ bedtime, I felt awful and just wanted to feed them some dinner. Jackson was being a typical boisterous toddler, and me…well I just sort of snapped. He was asking to go visit grandma, something he had been asking repeatedly since he came home from her house. I knew, even as the words were coming out of my mouth, that I shouldn’t say anything; knew that I should breathe deep and twist the sleeve of my shirt.  But did I? No. Off I went. “There will be no visiting grandma, no Star Wars, no sunshine, no rainbows, no music, no laughter, no joy, no candy, just rain, rain, hard bread, and your crib.” My face fell, and the guilt immediately washed over me. Jackson on the other hand, just looked at me, and I kid you not, blew a raspberry. Yeah, that happened.
Between my pain-filled frustrations, the insane hours I clock at work (factoring in commute) and the non-organic powder-packet dinners, I will not be winning any parent-of-the-year awards. Ever. But hey, at least America is known for giving out participation awards!
May 2 2017

Pet Rock

A Facebook friend recently reached out and asked if anyone would be willing to help with a special project: to send cards to a patient. A teenage boy has been hospitalized for the last few months because of his Crohn’s. He has missed school, a Disneyland trip, and is about to celebrate his 18th birthday as an inpatient. This request has stirred up some feelings about my first hospitalization.
At seventeen, after a five-plus year battle without answers, I was finally diagnosed. I had been feeling awful, a typical flair. Ironically enough, the day the doctor called to have me admitted was the first day in a long string of them that I remember feeling good; feeling normal. (Whatever that means.) I had just gotten out of the shower when my parents knocked on my bedroom door. I remember ducking down behind my bed and watching as both of my parents came into the room. My mom was clutching a phone and had tears in her eyes. My dad, my dad looked as white as a ghost. Iron anemia. I was so low on blood that I needed to be admitted to have two pints transfused. It wasn’t until after I was admitted that the diagnoses would come.
During my stay, a volunteer at the hospital gave me a rock. I don’t know if that was typical behavior or if I just looked like I really needed a friend. This rock, it didn’t take away my pain. It didn’t stop the fear from soaking me to my core. Or even stop my mom from snoring as she laid beside my hospital bed. What it did do though, was offer me peace. It made me feel less alone.
Pet Rock
Ten years have gone by, and in those years ten different moves have transpired, and I still have that green, painted rock. It is a part of me; a part of my story.
Some days it feels like we get through on kindness and love alone. Maybe a card is not the dream gift for an 18th birthday; maybe a painted rock will not change the outcome of a patient’s stay, but then, maybe it will. This disease has shown me to look for the light in the dark, even if the light is a faint glowing ember in a dying fire, there is beauty to be had. There can be beauty in the breakdown.