Monday, December 3, 2018
Awareness and Blessings
I grew up in a literal fairy tale…I had a mom and dad who loved me, siblings to fight with, friends to play with, and an early bedtime. I was never worried or stressed or overwhelmed, that I can remember. I ate good food, laughed a lot, spent days at the pool or in the park, sang songs in the car, and spent entire evenings playing Kick the Can, Tag, or Gray Ghost (that was my favorite). I rode my bike all.over.the.neighborhood! I bought candy at the corner store, buried treasure in my backyard, and hid from the world in my friend’s tree fort. I had nothing that needed awareness; I knew no one who needed awareness. Even through high school and most of college, I remained sheltered and, basically, unaware. I trusted everyone, believed everyone was good, and viewed everyone as if they were just like me. Man, has that ever changed!
I’m a little embarrassed to admit it, but when I graduated college with my Master’s in Speech Language Pathology, I still believed I would work (mostly) with typically developing kids who just didn’t have all their sounds right. I wasn’t familiar with, let alone comfortable with, people who were much different than I was. I’d never been friends with anyone who used a wheelchair or an electric voice or a picture exchange system; no one who had major food or environmental allergies, growth challenges, or noticeable developmental delays. I either wasn’t exposed to people who were different, or I simply didn’t process them as being different. Either way, I’ve fallen in love with kids and families and causes over and over again ever since.
My most personal cause for awareness is the focus of this day - PKU (short for phenylketonuria). It’s a metabolic disease that affects 0.004% of the population. The short explanation is that people with PKU lack the ability to metabolize an essential amino acid in the protein molecule. Left untreated, it builds up in the bloodstream causing a multitude of issues including possible intellectual impairments, seizures, hair loss, system retardation, and even death. There is no cure. My son has PKU. It is treated with a severely restricted diet. My child has never had even one bite of beef, pork, fish, eggs or poultry (except when he pulled a chicken leg out of the trash when he was two). He doesn’t eat things made with regular flour, wheat, oats, or grains. He doesn’t drink cow’s milk (or almond milk or goat milk…). He does eat measured amounts of fruits and vegetables (not many green ones) French fries, and scientifically modified foods. He is fueled on oil and sugar. I have to advocate substantially for my son and my family. I wrote a book to spread awareness (Everybody Has Something, 1994), I spoke at schools and clinics, I talked with SO many insurance representatives and filed SO many appeals in an attempt to build awareness and advocate for insurance coverage (I’m still working on that). Most recently, I created a non-profit public charity called Metabolic Bright that will help families pay for necessary medical formula and food not covered by insurance, which can cost in excess of $20,000 dollars a year.
And that’s just my battle…you guys know what I’m talking about - you advocate for families who are trying to get AAC devices, respite care, financial aid, or medical equipment. You see the parents who work and work to get their kids services. We all took the ice bucket challenge for ALS, walked the AIDS walk, and gave money to the March of Dimes. We write letters, sign petitions, make phone calls, donate food, donate money, and donate time to multiple causes. We make people aware that we need help, that our friends need help, that our neighbor's cousin’s daughter needs help, or that a boy in another country needs help. It’s almost profound when you realize that most of life is helping other people get through it! No one does this alone! It doesn’t have to be PKU, or autism, or some terrible disease, it's simply an awareness of what other people are dealing with; what their life looks like. When we’re aware, we offer hugs and love to people who need it, we take food after a surgery, we share pictures of lost dogs, we call to check on elderly neighbors, we volunteer to help, we hold hands, we offer shoulders, we pray. I think the secret to a happy life is being aware of what other people are living, acknowledging their life, and sharing in it with them. We are all so blessed.