There are some things parents can’t know about their children until they happen. What does their laugh sound like? Do they prefer carrots or green beans? Will they be an athlete, an artist, a teacher?
My parents experienced their share of surprises with me, but the hardest — and perhaps most shocking — was my celiac disease diagnosis during my senior year of high school. Suddenly, they had a new question to tackle: What do you do when your child is wasting away right in front of you?
When celiac disease came into my life, it might as well have married into the family. I was the only one who couldn’t eat gluten anymore, but my parents had to adjust our family meals, learn to label utensils and wipe down crumb-covered counters. And they hurt with me when, in September of 2013, I stepped on a hospital scale and saw that I was only 83 pounds.
When my eyes watered and throat seized at the feeding tube pushed through my nose and down my throat, my mom squeezed my hand and stroked my hair.
When I cried hearing that the tube would remain indefinitely, my dad encouraged me to “get a bright nose ring,” if that made me feel better.
When I spent my first night in the hospital nearly screaming from the sinus pain caused by the tube, my mom comforted me from the cot next to my bed.
As much as my celiac complications — particularly malnutrition and vitamin deficiency — and hospitalization pained me, I could see my parents hurting even more. Only a few months ago, I asked my mom what she remembered of my hospitalization. Her answer? Fear.
“It reminded me of when I was pregnant with you and went into preterm labor,” she said. “It was another desperate situation where we might lose you. But, again, I had to trust that it would get figured out.”
I learned to trust that, no matter how dark my celiac disease seemed to be, I would be okay — thanks to my parents’ love, support and encouragement. Without them, I wouldn’t be able to be thriving like I am now.
Looking back, I realize that as my body healed and strengthened, my understanding of what it means to be a parent to a chronically ill child grew too.
Parents may not be able to cure, but they comfort. They cry with you, yet keep you laughing. They sacrifice sleep, time, money, and a comfortable bed for a chance of healing. And they never cease to make you feel lucky, because while you may have a disease, you have a pair of astounding human beings as folks.
In my limited understanding, parenting is full of surprises. Sometimes they’re small, like a natural knack for piano. Sometimes, they’re bigger, like a life-changing medical diagnosis. I know my parents have experienced both kinds. But the one part of my life that’s remained constant? My parents’ love and support. And I love them for it.
How have your parents impacted your celiac? Comment below!
Are you newly diagnosed with celiac disease? Check out Going Gluten Free: Essential Guide to Managing Celiac Disease and Related Conditions by Joseph A. Murray, M.D.
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