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?

Tuesday, February 27, 2018

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.


Monday, January 1, 2018

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!

Tuesday, April 26, 2016

It's a Matter of Screening

Originally written in September, 2015.

He was born on a Thursday morning in the summer of 1996 - all 7 pounds, 1 ounce, and 18 inches of him. He had a long big toe and a mop of dark hair and bright blue eyes, and he was perfect…for 8 days. It turned out that our beautiful, happy, healthy-looking boy had Phenylketonuria, or PKU for short. His liver was missing something that it needed, and he would have to make many adjustments in his life because of it. There was (and still is) no cure.

Literally, in one moment, our son went from ‘normal’ to ‘different’, ‘healthy’ to ‘sick’, ‘perfect’, to ‘not-quite perfect’. It was scary. We were uncertain and nervous and confused; it was the most raw, anxious, and emotional time of our lives.
Thankfully, PKU was one of the five (yes, only five) diseases the state of Kansas tested for at birth in 1996 (along with galactosemia, hypothyroidism, sickle cell anemia, and hearing). That newborn screening for PKU saved my son’s future, and possibly his life.

Fortunately, the Kansas newborn screening panel now includes all 29 diseases recommended by the American College of Medical Genetics. In addition, Kansas has a comprehensive system in place to support the 2,000 (or so) babies who are identified through newborn screening each year, including: follow-up, diagnoses, management, education and evaluation.

September is National Newborn Screening Awareness Month – and we can celebrate knowing that we live in a state that understands that newborn screenings save lives, plain and simple, and I know how that feels personally, some of you do too.

Fast-forward 19 years and that beautiful, happy, healthy-looking boy is just that! He’s in college studying dietetics, living a normal life with a lot of adjustments, but aren’t we all? It’s the basis of humanity - that our amazing, resilient, individual bodies are flawed, yet wonderful. We’re a group of imperfect people living in an imperfect world, doing the best we can do with help from each other. And I love that!


Friday, January 1, 2016

New Year's Day

Every year around this time I sit down and make a list of all the awesome things I want to accomplish in the New Year, because that’s what we do, right? I refer to my “to do” list as “inspirations” rather than “resolutions”, because it sounds more spiritual or doable or something. In the past my lists included: losing weight, eating healthy, being positive, finding the good, getting more sleep, spending less, praying more, reading more, relaxing more…and all those things are good. But the fact is, I weigh more than I ever have, I don’t eat healthy, I’m cynical (even negative), I stay up crazy late, buy what I want, pray marginally, read occasionally, and relax almost never. I guess I’m one of those optimists who plan big and fizzle out. But the important part of that is the “plan big” part.

I can think of a hundred things I’ve started in my lifetime that I didn’t finish – the snow fort when I was 10, the yard I thought would be fun to rake, the Thank You cards for my 8th grade graduation… more recently, my 2015 Christmas Cards (they’re coming, I promise). Months and months ago I asked two old friends to help me brainstorm some ideas for a speaking gig about that book I wrote 10 years ago, and then I never sent them copies of the book…why did I do that? Why do I start big things and then not follow through? I want to change and learn and grow; I want to push my limitations, step into a new setting, challenge my being…but I often stop before I really start.

I did that with piano lessons too, and traveling and cooking and organizing and budgeting and writing and exercising and a lot of other things. I was super excited to get one of those Mandela coloring books for my birthday last year and was finished with it before the first picture was complete; it stressed me out with all the tiny spaces, different colors, time…I learned that tedious, slow-paced activities are not my thing. I learn something from all my unfinished starts – something about myself, about what I like and don’t like and want and don’t want; something about timing or relationships or desire or talent. I learn to adapt, to plan, to do it differently or not do it at all.

At 48 I’m finally accepting and honest about who I am, what I like and don’t like, what I’m good at and not-so-good at, and most of that information came from all those endless beginnings. I didn’t make a list of inspirations/resolutions/to-do’s this year, I just made a decision – to begin again.

This New Year I wish you the opportunity to begin again too, to begin something, anything.


Wednesday, December 2, 2015

It's All (sort of) In the Plan

When I was in grade-school, I played those little folded paper games, the ones with the squares that glided back and forth on my index fingers and thumbs; the ones that predicted my future. I’d answer a series of questions and find my fate written in tiny printed pencil under the fold of the third choice. Or, I’d make lists of my favorite boy names, vehicles, pets, jobs, and homes and eliminate them one-by-one by crossing off every 4th (or 6th, or 9th) word, over and over, until there was only one option left in each category – my future - I’d marry a guy named Frank, drive a bicycle, have a pet fish, work as a nurse, and live in a mansion. It was fun! And, I got really good at it too! I knew how to list the options and pick the number to create the future I wanted every.single.time. If only real life were as predictable…

I consider myself a planner - I make lists, clip coupons, prepare driving routes and meals and trips to see my mother. I buy anniversary/birthday/graduation cards before I need them, have Tylenol and Band-Aids in my car, and fold laundry right out of the dryer (because there’s just something satisfying about neatly folded piles of tees and sheets). I get kids in for dental cleanings, sport physicals, and annual check-ups...but still, no matter how much I plan, life smacks me in the face on a regular basis, because that’s what life does!

I didn’t plan to have four kids (only two), live in Wichita (try NYC), or be a speech-language pathologist (writer). I didn’t plan on natural childbirth, asthma attacks, or near-death scares. Or raising a child with special needs. I didn’t plan on calls to poison control, trips to the ER, spinal fractures, sleepless nights or car accidents. I didn’t plan to understand the worry over a sick kiddo, the frustration of another denied insurance claim, or the guilt of losing my temper, again... Or hundreds of other little moments.

But, I also didn’t plan on the sweet smell of a freshly bathed baby, or the soft, smooth, warm snuggles of tiny cheeks. I didn’t plan on belly laughs, bedtime stories, or butterfly kisses. Or the awe of a sleeping child on my chest or in my arms or in my heart. I didn’t plan to care so much about that first smile, first step, first bite, or first birthday. I didn’t plan to understand the joy of a walk around the block with a toddler, or a walk around the mall with a tween, or the excitement of a first date, first kiss, first love… Or hundreds of other little moments.

My life looks nothing like I planned it to look, thank goodness, because I’d never planned to love it so damn much!


Thursday, June 4, 2015

The Nest

I had my first glimpse of the infamous ‘empty nest’ today. From a woman who has secretly been looking forward to quiet, calm, time-on-my-hands evenings, it kind of sucked. I’d been home for a while and reached out to each of my four kids hoping to go with one of them to a movie or on a walk or out for ice-cream or something. It didn’t happen. They were all busy with their friends – one was already at a movie, one at a soccer game, one on their way to work, and one playing football with his buddies. I was happy that they were happy and involved and engaged, but I was kind of sad too.

It wasn’t too long ago that I didn’t have a minute to myself. I was holding or feeding or wiping or changing or bathing or cuddling or walking or bouncing a baby. I cooked and cut and cleaned and explained and fixed things. I planned play-dates and read stories and baked cookies and watched hours of educational television. I was never alone, not even while showering or dressing or using the bathroom. And as the kids grew, the responsibilities grew too - evenings were filled with parent meetings, school plays, team dinners, and every-kind-of-ballgame-you-can-imagine in the heat, the cold, the rain and even the snow. I proofread, quizzed, practiced, quizzed, reviewed, and quizzed every subject nightly. I soothed sore muscles, and mended broken hearts - and prayed endlessly. “It will go fast”, they promised, “enjoy it while it lasts” they whispered - and I did. But I still longed for stillness and uninterrupted moments. Or at least I thought I did.

It’s funny how you don’t notice changes when they’re happening right in front of you. Stick-figure drawings evolve into portraits, story-books into novels, and play-dates into car-dates. Friends play longer and bedtimes move back. Bathroom doors close. Morning routines, once filled with miss-matched socks, miss-placed library books and nearly-missed busses, merge into a schedule of alarms, breakfasts, book bags, and keys. You purchase a variety of lotions, creams, sprays, and pastes. Your friends become the parents of your kids friends and the activity calendar is jam-packed. You learn how to text, update, chat, post, and tweet. Sweaty socks, work-out clothes and ball uniforms fill the laundry, Summer job applications fill the kitchen table, and graduation thank-you cards get mailed out. You don't see any of it as out-of-the-ordinary...until you do.

That ‘empty nest’ I’ve been looking forward to? It kind of sucks.


Monday, March 23, 2015

Why Be Normal?

When I was in high school my friends and I wore upside-down pins on our shirts that read “Why Be Normal?” We had some other pins too: “Smile”, “Ask Me If I Care”, “Somebody Loves You”, and a lot more that I can’t remember but the “Why Be Normal?” one was always my favorite and it became kind of a moto for our little group. Maybe it was the fact that we allowed ourselves to behave differently than our peers, we were comfortable stepping outside the social box so to speak – but not too far out, just far enough to be different, and it was good.

I didn’t grow up with kids who were much different than I was. My brother had a friend on his baseball team who had a lower leg prosthesis (and I had a crush on him), but that was about it. I didn’t know anyone who talked differently or walked differently or used a wheelchair or a walker, anyone who communicated via computer or who had a rare disease or a syndrome or cancer or autism or anything else. I’m sure all those things were out there, I just don’t remember seeing them. I don’t think people celebrated being different 30 years ago. In fact, when someone told me I should be a speech language pathologist I didn’t even know what it was because I’d never known anyone who needed one!

Fast forward to today – we all took the ice-bucket challenge for ALS, we wear pink for cancer and red for heart disease, we walk for MS or Alzheimer’s or Down’s syndrome, we run for autism and bike in the mountains for PKU (my son’s disease). We hold fundraisers, write letters, change profile pictures, sell cookies or candy or wrapping paper or nuts. We share, teach, support, donate, sponsor, educate and advocate for our children, our friends, our families, the boy down the block or in the next town or across the ocean. We talk out loud about our issues, tell people what we have, what we do, and what we don’t do. We build awareness everyday about the disorders that affect us, and it’s good, because people can’t accept what they don’t know, and it’s our job to teach them.

Eventually, it will be ‘normal’ to have Something that makes you different, and until then, “Why Be Normal?”

March is Developmental Disabilities Awareness Month; make somebody aware of your Something.