When the world says, “Give up,”
Hope whispers, “Try it one more time.”
Three weeks ago, I received an email invitation from Lucile Packard Children’s Hospital Stanford: YCHU Lecture: How the Other Half Eats: Sensitive, Fearful and Low Appetite Problems in Youths. I scanned over the email; it was a community lecture discussing Avoidant Restrictive Food Intake Disorder (ARFID).
“Finally!! I don’t believe it!” I yelled to my older son who was upstairs in his room.
“Believe what?” he replied as he came downstairs.
I showed him the email.
“Are we going to go?” he asked; the look on my face was obvious: Absolutely!
Last year, in my blog post “Hungry For Hope” I touched on my son’s ARFID (he self-diagnosed in 2015) and again in a more recent post “A Small Inquiry” however, most of my writing about the struggles we’ve had with his eating and his diet has been kept to myself.
Words of anger, rage, frustration, and hopelessness about ARFID fill page upon page of my writing; I’m too ashamed to share them, too afraid to put the words out on my blog, where I would be exposed as a parent who failed or put in a position to have people ask “Have you tried….?”
Part of me was incensed and upset: why now, where was this fourteen years ago when we first noticed the issue he had with food? Or even four years ago when I called the Stanford Eating Disorder Clinic? When I contacted Stanford in 2015, the clinic wasn’t treating ARFID and couldn’t do anything to help us.
Bitterness, anger, and frustration about my son’s eating issues are the emotions I work hard to push down each day; I have to hide the emotions so I can maintain a positive and happy façade. It’s a lot of work.
After my son’s self-diagnosis, we found a naturopath who recommended eliminating gluten and dairy; this change in diet helped with his focus and concentration, however, it severely limited his food choices. His “safe” foods are Cheerios, French fries, black beans, bean and cheese burritos, and chocolate almond milk. We practically live at a local taqueria where, twice a week we purchase nine (9) bean and rice burritos that my son eats for breakfast, lunch, and dinner.
At the lecture, we learned that the information from the ARFID study was just seven or eight months old; there’s still so much still to discover and learn.
A case study was presented and while the study was about a 9-year old female patient, the study could easily have been my son: every fact, every detail, and the behavior described was exactly, nearly to a T, what my son had been enduring all these years. Knowing my son wasn’t alone and that he could get help, provided me with some relief.
The last 14 years have been an emotional roller coaster: we no longer travel or eat out in restaurants because of my son’s limited food choices. I worry about him being able to eat once he goes off to college. I worry about his overall health and managing social situations. I worry, but I refuse to give up finding a solution.
Do I feel hopeful that ARFID can be treated? I don’t have any other choice but to try one more time.