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.

Margaret

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!