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, 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!

Margaret

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.

Margaret

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!

Margaret

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.

Margaret




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.

Margaret

Friday, January 2, 2015

Let It Go...

So, I haven’t written a blog in a full year. I’ve had a lot of blog ideas, but no action. That was kind of my way of life last year – lots of plans with no action. I planned to work on my budget, lose some weight, write more thank-you notes, find the good, be positive…blah, blah, blah, I didn’t do any of it for any meaningful amount of time. I was (still am?) in a funk. I’ve considered medication, tried meditation, sought relaxation, but ended with frustration. Why? I think I figured it out and I just need to write it down and let it go…

My dad died August 17th, 2013 and I think I’ve finally worked through it. It wasn’t really a surprise event, he’d been sick for a long time; well his body was sick anyway. We were fortunate that he was almost always able to talk. I could write pages and pages about my dad and the awesome conversations and meaningful moments and honest comments and genuine love we shared, but none of those are why losing him was so difficult.

Dad was really sick the Christmas of 2012. I took my family to see him when we came home for the holiday and it was awful. He kept bundling up his blanket and patting it like he was keeping a baby safe. He was mumbling to himself, but couldn’t converse or make any meaningful connection. I went back and sat with dad after the Christmas hoop-la, before heading home. I talked about the kids and their activities and my work and my marriage and some of my best memories. I asked him about death and God and the meaning of life. I apologized for not coming home more and not calling everyday and not doing all the things I thought I should have been doing. Then I promised him I’d make the drive home to see him every Sunday. Then I left.

The next morning my mom called and dad was awake and eating. By the weekend he was better! I went home Sunday to a perfectly typical father. He didn’t remember being sick, didn’t remember Christmas or our conversation or anything about his previous condition. He was back! I went home the next week too…and then never again. Someone had a tournament, someone else had practice and Mike was out of town and friends were coming over – life got in my way, and I allowed it to happen. Dad was better, all was good, back to normal. I don’t know that I can ever regret anything as strongly as I regret my choice to break that promise. I will always struggle with that, but I can accept it, it was my choice.

Fast forward a few months…two strokes in succession and dad was unconscious. Hospice was there, and most of my immediate family. I went home. We talked and laughed and reminisced and ate and watched and cried. Random people came and went. Nurses stopped by. Someone sang Amazing Grace. We ordered pizza, said a prayer, paced, made plans, counted breaths…

(And this is where my breakdown starts...and this is only my take on it – I hesitate to write it down because others don’t share my perspective and I don’t want to stir up emotions for my family that don’t exist for them, but this is my reality and I need to let it go…)

The Hospice worker suggested, several times, that we leave for the night, and said she'd call if anything changed. We looked around at each other, someone said it was a good idea. The nurse explained that in her experience the sick person usually slips away when no one is there, or if people are there, they go when no one is watching. Dad was barely holding on. Then someone said that dad told them he wanted to be alone, and someone else said that he never liked being the center of attention. And somehow, we all said goodbye and walked out. I was numb. It didn’t feel right to me, but I didn't say anything. Thirty (or so) minutes later we got the call that dad had passed. He died alone in the room with someone he didn’t know at all. A tiny part of me wondered if the hospice nurse smothered him (terrible, I know, but it did cross my mind). I’ve heard it is as much a miracle to watch someone leave this world as it is to watch them enter it. I may never know.

Most of my family feels that it was a perfect exit. They know that dad needed us to leave so he could let go. And I accept that a little bit. I understand that my dad loved his family more than anything else and while we were all there laughing and talking and telling stories, it was hard to leave. But, seriously, we just let him go. I struggle because I wish we had sent him off! We could have stood around his bed and prayed the rosary and sent him off with prayer; we could have sat quietly remembering our best memories and sent him off with good thoughts; we could have put hands on him and sent him off with love; we could have gone to the chapel as a family and prayed for his salvation. But we didn’t. We all just left him there to figure it out on his own. And he did. And I know that it’s easy to look back at what you'd do differently, but we would never have left on our own, and we’ll never have the chance to do it again and stay.

My brother snuck rum (I think it was rum) in to dad's room and we had a celebratory drink for dad. I loved that! It was a happy event, he was ready to go; I just wish he went surrounded by family, that’s all.

Death is a funny thing…it affects everyone differently and no one as they expect it will…or at least that’s my experience.

Margaret



Wednesday, January 1, 2014

Let's Talk...

I ate lunch with an old friend over the holiday. It’d been years since we’d seen each other and I was anxious, excited, and eager to catch up. We’d carved out three hours to sit and eat and drink and chat. I arrived early, picked a quiet table, and waited. When she slipped into her side of the booth, we both squealed a little, hugged over the table, threw out a few compliments, and then settled in for a good old-fashioned girlfriend lunch.

It was perfect. Except…

We’d only covered one vacation and a tiny bit of family before her phone buzzed. She apologized, put it upside-down on the table and continued…we’d just reached a grade-school spin-the-bottle memory when her phone rang again. She sighed, held up a “wait-a-sec” finger, punched out a quick message, and got right back to the story. And that’s how it went the whole three hours; a bitter-sweet symphony of chatter, laughter, and phone banter. It reminded me of the conversations I had when my four kids were all small – trying to finish a thought while slicing grapes into slivers, pouring juice and putting out all kinds of fires. Don’t get me wrong, I loved seeing my friend and I’m looking forward to our next get-together, but it made me realize just how attached adults can be to their phones.

It could be part of the instant gratification theory, or maybe just a byproduct of everybody having a phone with them all the time. I mean, I keep my phone close to me and answer it when it rings and return texts when I get them (most of the time anyway). I don’t have my phone on ALL the time, but when I do, I use it. Face it, when we’re bored we check Facebook; when something’s funny we Instagram it, when we’re lost we pull up Google maps. Our phones store numbers and addresses and messages and reminders; they hold schedules and notes and pictures. We need our phones, we just don’t need them all the time!

Everybody knows that a phone call or text or picture or vine is NOT as important as face-to-face communication, but (do we even realize?) we don’t always show it. When we’re engaging with other humans in any way – having lunch, shopping, talking, meeting, whatever – let’s remember to turn our phones OFF or at least put them on silent, and offer our undivided attention to who we’re with.