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!

Margaret

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.

Margaret

Go Hug a KId Today

At the start of the year, I promised myself I’d write ‘a blog a month’…I started January 1st and it's the last day of February, so I barely made it! It works out well though, because today is Rare Disease Day – not necessarily a day to celebrate, but definitely a day to spread awareness.

Most of you know the story of my Jack and his ever-challenging life with Phenylketonuria, PKU. I won’t tell the whole story again, but here are the bullets: PKU is a genetic disease caused by two defective recessive genes on the 23rd chromosome. It’s a metabolic disease of the liver – Jacks body cannot metabolize one of the essential amino acids in the protein molecule, and because of that, he eats a severely restricted diet, almost void of animal protein. He’s not ‘vegan’. He doesn’t eat animal products (meat, eggs, cheese, milk, fish, poultry...etc), but he also doesn’t eat grains, seeds, beans, soy and higher protein veggies (like peas, broccoli, and asparagus). In addition, he cannot eat most store-bought breads, pasta, pastries, cereals…you get the idea. There is no cure for PKU, or for hundreds of other rare diseases. Jack is healthy because he drinks a medical formula that keeps his metabolic system balanced. Kansas does not require insurance to pay for metabolic formula, even though without it affected people would be significantly developmentally delayed, to the point of possible system failures and even death. Of course, it can cost thousands of dollars monthly.

Even so, on this day to spread awareness of rare disease, we can celebrate the lives of extraordinary kids, the sisterhood of parenting them, and the appreciation for medical professionals who love them like we do. We sleep at night knowing that science is working to save our children, and our children are working to stay healthy until that happens. We celebrate the bond of knowing just how hard it is to appeal insurance (again), to get a good finger stick on the first attempt, and to find a new low-protein food that actually tastes decent. We share the excitement of finding a gram scale on sale, scoring a new mixing container that fits easily in a cooler, and learning tips for a successful sleepover. We feel blessed to know that we are not alone. We love it when people ask us questions. We genuinely understand that “kids are kids” no matter what size, shape, color, religion, economic status, education, or disease.

Go hug a kid today.

Margaret

The Cost of Love

“I knew I’d be able to take care of you, and buy you nice things here and there, but DANG, loving you is expensive!” -Mike Domnick, 1992

It’s true, love does cost a lot.

It costs moments of insecurity, wonder, risk, and passion. Moments spent fantasizing about a future with a person you’ve just met, or a person you’ve known forever. Moments that eventually become memories.

Love costs holidays with different friends, different family, different traditions, different foods, and in different surroundings. It’s stressful meeting new people and making first impressions. It costs little pieces of yourself while you try to fit into another person’s world. Everything about your life changes when you love another person.

Of course, love costs money too, and time, patience, compassion and understanding, right alongside doubt, frustration, uncertainty and anxiety.

If you have children, love costs years (literally) of sleepless/restless/interrupted nights filled with walking/rocking/bouncing a fussy baby; feeding them, burping them, and cuddling them close to your heart. You help your children sleep, and when they do sleep, you check to make sure they’re breathing. You pray for your children, you hope for them, care for them, and raise them. And you do this together with your spouse, on whom you continue to spend time and moments.

Love costs hours of concerned conversation about bites, burns, coughs, fevers, shots, screen time, vitamins, and milestones to learn about whatever your child is experiencing. Love costs many, many, hours of waiting – for buses, for programs, for appointments, for naptime, for the crying to stop, the sun to come out, or the toys to be put away. It also costs tears, pain, fear, stress, joy, laughter, and gratitude. It’s a wave of emotion that hits over and over again, and when you finally settle in to the rhythm, it changes. Love requires balance.

Love also costs time - to find the right words to soothe hurt feelings, or a bruised ego, or a failed attempt. It costs time reading, coloring, pushing the swing, or learning to tie shoes. Sometimes love costs all your time, leaving little for you to spend on yourself. You give up time with friends, time at the movies, time eating out or shopping or at Happy Hour with coworkers. You miss out-of-town events in favor of keeping schedules consistent. You skip manicures, massages, and spa treatments to afford music lessons, gymnastics, and tee-ball. And you’re happy to pay those costs.

And it doesn’t end when the kids leave home – when you aren’t spending time taking care of them, you spend time worrying about them. You wonder if they’re sleeping enough, studying enough, eating enough. You worry about date drugs, drunk drivers, and sex trafficking. You keep your phone with you in case they need you – and you like it when they do, as long as they’re safe. You wonder if your advice is appreciated, if you raised them well, if you did enough. You blame yourself for everything that goes wrong, and praise them for everything that goes right.

So it’s true, love does cost a lot! It costs everything, and it’s priceless!