Margaret Domnick - The Inside Story...

I'm a woman, mother, friend, sister, daughter, wife and partner in crime. I'm spontaneous, anal, loud, loving, funny (or at least I think I am), and generally honest. Sometimes I get these thoughts... so I've created this blog to share them. Feel free to respond, but be kind...did I mention that I'm sensitive?

Monday, December 24, 2018

The Piano

Christmas Circa 1974. It was packaged in a large, round hat box topped with a giant blue bow. I saved it for last, expecting to find a coveted basketball inside, or maybe roller skates. I pulled the ribbon, threw off the lid, and found a piece of paper with fancy cursive writing (that I couldn’t decipher) instead. Turned out I had received piano lessons, gifted by my grandmother.  I faked a smile, gave an exaggerated hug, and stifled the sadness in my heart.  My first lesson was two Fridays later at 3:30pm. Mrs Miller arrived in a dress with a briefcase and a handful of peppermints.  She sat on my right side and patiently taught me week after week after week after week…. I was not a natural. I learned the right hand notes pretty well, but I couldn’t master the left. I had to really study to play songs - I memorized them, and once I had them, I HAD them! My favorite pieces were: The Pink Panther, Mexican Hat Dance, Brian’s Song, and Fur Elise (I can still play them, kind of).  Growing up, when I was at my Grandma’s house, she'd say “Margaret, why don’t you play us a little something on the piano”.  Then she and my grandpa (and whoever else was near) would sit in the living room as I fumbled through some elementary piece. She’d comment, “Oh, you’re so talented, I just love to listen to you play!”  She lied, and I love her for it.  My Christmas gift lasted 7 years before I finally quit.  I never learned to sight read, I never got the rhythm down, I never gained an understanding of music; it just never ‘spoke’ to me. My grandma died when I was in college and I took her piano.  I’ve had it with me in all of my homes.  Each of my kids banged on it when they were babies and played little songs and duets with me over the years.  But as our schedules filled, the piano sat unplayed, out of tune, dusty, and forgotten. Once in a while I’d fumble with the keys until favorite songs came together, but those moments were few.  

I gave my piano away today. First I offered it to my siblings, all of whom either already have a piano or don’t want one, so I put it on Craigslist for “FREE”.  Once it was listed, I cried; I don’t know why, but I cried.  Mike and I have been talking about selling it for years, and the time seemed right today.  A woman called and came to look tonight - she was so happy when her fingers hit the keys, and it was easy to tell she felt the music in a way I never had.  She mentioned that she did not have family, and that my piano will bring her "so much joy" this Christmas. She didn’t seem bothered that it was unkept and out of tune.  I can’t help but wonder if SHE is the reason I dragged that piano to all 6 of my homes - so that finally, it could be celebrated and cherished by someone to whom it brought such joy. 

Tonight I realized that I loved my piano as a ’thing’, and I was reminded that life is not about ‘things', its about celebrating and appreciating what brings us joy!  

Merry Christmas!


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.