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My-Vida. 

This is my life. This is life with Myotonic Muscular Dystrophy. This is truly living your life—that dash of punctuation that defines your existence, from the beginning of your life, until the end. This is THRIVING in your dash. This is My-Vida.

Home is Where Your Nest Is

It's 1:49 in the morning. I am keeping watch over my son while he sleeps to ensure nothing happens to compromise his breathing and/or health. (These duties are shared by the nurse, who so kindly agreed to join us to travel back to my childhood home in order to spend a...

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Ooh Child…

Today, but a sheer stroke of luck, I had a break in my schedule. Instead of filling it with an appointment request, I took the time to go to a yoga class led by one of my favorite yogis, a class I haven’t been able to attend in probably close to a year, due to work...

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The Light at the End of the ICU Tunnel!

For over three months, I have looked at that white board in his room at the “Anticipated Discharge Date.” Blank. Empty. No ideas. (Save for Gianna who wrote a while back, “We don’t know.”) No end in sight. No clue when we would actually get out of here. Well, that has...

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Four Things to Know

For those of you who don't really know me (and those that do but want a reminder), here are four important things to know about me.... I don't take "I don't know" or "Maybe" or "I don't have an answer" for an answer. Translation: I am not satisfied with the fact that...

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This Is Terrible. Keep Going.

Late last night we got some preliminary results of the MRI: no tumor, no aneurysm, no bleeding, no stroke, no surgical damage, no traumatic brain injury (the last three of which we already pretty much knew.) The only apparent thing was what appears to be an infection...

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No Sprinkles On This Donut

I couldn’t go all the way back into the room as they prepped G for the “big donut” (without sprinkles on it, as he told me.) Instead, I directed them from about 15 feet away, saying things like, “No, you can’t start this until he’s fully asleep or he will freak out,”...

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Two Truths and a Lie, Oregon Trail Style

If you were in elementary or junior high school sometime in the 80's, there is a pretty strong likelihood that you played one of the most intense games ever (or at least of its time,) "The Oregon Trail," that would leave you dying instantly from some calamity or...

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Awareness

I have been accused by many of focusing too much on my children’s disease, of creating a self-fulfilling prophecy of weakness, inability, and demise in them, and of assuming an identity solely centered around being a mother of disabled children. Today, July 27, 2019,...

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The Whoopie Pie Kind of Mom

My mom is amazing. She is generous, kind, loving, dedicated, and a million other inspirational things. She goes out of her way, deprives herself of sleep, and extends herself to great lengths to make sure that a lot of other people around her, including her kids feel...

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A Non-Minnesotan Request for Help

As you may have heard, we’re in it for the long haul here at the ICU. Due to this becoming our new normal, and needing to try to maintain some of our old normal for these kiddos and our family, to whatever degree possible, I am doing the thing that I am terrible...

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A Blessed Birthday

A couple of days ago, I celebrated the big 3-9. I knew quite a while ago that while this year's aging was bound to be memorable, and my suspicions were quite spot-on, as it turned out to be both a blessed and a blessed day (see my earlier post on this dual-meaning...

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The Emotional Maze

So, there's a lot going on right now. A lot. I've had just about every metaphor for this excessive goings-on tossed in my direction--I've got irons in the fire, balls being juggled in the air, plates spinning, my hands full, as well as my plate full. On the whole, I'm...

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My Son is Alive

My son is ALIVE. We've been in the ICU for a month. At this point, I assume that nearly everyone in the unit knows the story of why we're here because: A. People talk and word gets around, B. I have shared this story so many times that I just figured word had gotten...

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Cocktails and Safekeepers

The last few days have been a bit volatile, to say the least, with some of the biggest highs followed by some significant lows. All of these events have been due to the ongoing very non-linear and sometimes messy place that we are at, as we work towards getting...

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A Big, Loud Exhale

When I'm supporting someone in a labor, I teach them to take a big inhale through their nose followed by an audible exhale through their mouth at the beginning of every contraction.  This is a sign to everyone in the room to stop talking, to not take their blood...

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Withdrawal Sets In

My heart is aching tonight...and not because my guy had a bad day. It was quite the opposite, for the most part. We started with a very early morning rise to a blown IV, the IV that replaced the PICC line he had partially pulled out, which was now carrying all his...

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Delirium in the ICU

Fifteen, going on sixteen days ago, right around this time, I shed some of the only tears that have left my eyes in any large volume since we've been here. These were the tears of frustration and pleading to the doctor formally known as Giacomo's pulmonologist to not...

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The Sibling Support Group

Without a doubt, these last couple of weeks have been tough on all of us, but I just can’t describe how amazing it is to see my four children together during this time. They each bring their unique personalities and immeasurable love to the healing space here in...

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Vida

Vida. It means “life.” I found this “Vida” sticker on my banana the other day and knew I needed to add it to our ICU decor. The ventilator seemed like the best place, given that it has been keeping G alive for the last 11 days. As soon as I stuck it on, I saw this...

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Blessed

Blessed. There are many definitions as to what that word means, subject to personal preference, spiritual or religious context, or slang, and oddly they can be completely opposite, ranging from ultra holy to damned. When I picked up this shirt at my neighborhood...

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The Word of the Day

How was the day? Well, if Giacomo could speak, I’m fairly sure he would turn to one of our favorite apps, the “Word of the Day,” and call out this word: incommodious. He was stable but clearly not loving the day, as I think his 8 days here is starting to wear on him,...

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Dress for Success

I put this shirt on this morning in the hopes that it would be a good omen and prophecy, after a couple of long crazy nights with high temperatures, multiple antibiotic changes, and sedation-medication-tweaking. I don’t want to curse the night, but so far, so good. He...

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Our Recipe for Healing

If you have recently looked up a recipe on the internet at any point in the last five years or so, you will notice that you have to scroll down through lengthy amounts of text of a back story, intermingled with photos of elements of the cooking process, ingredients,...

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Light in the Darkness

After the debacle on Tuesday, we have been finding the moments of happiness by looking for light in the darkness...the last 24 hours have brought new sedation medications that have given us very occasional glimpses of the G that we know and love, who opens his eyes...

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The Price of Being Right

I like being right. A lot.  However, being right sometimes comes with a high price tag, as I found out yesterday. Here's the scene: In preparation for Giacomo's surgery, I was told to anticipate a 2-week ICU stay to stabilize his breathing, amongst other things. At...

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Hope, Ten Years in the Making

Over ten years ago, I first walked into the craniofacial and cleft palate clinic at the Univerisity of Minnesota, with my dear, sweet boy, Giacomo. At that time, I was well-entrenched in his medical mystery journey, still about two years away from a diagnosis of...

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Dying Laughing

In our household, we have a problem with excessive laughter at the dinner table (hence the “Laugh” sign over the table.) While this might not actually seem like a problem to most, when you have four people with swallowing dysfunction that could lead to aspiration...

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You Needed It, Mom

At our nightly bedtime check-in of the "Best and Worst of the Day," I was not surprised that a couple of the kids cited the best part of their day as me playing on the Wii. For many years now, some of their greatest joy has been me putting my best effort forth (with...

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A Hidden Treasure

Without a doubt, there are many challenges to having a child who has a much younger emotional intelligence than their chronological age. However, it also means that every once in a while, you find little treasures like this tucked into the book you're reading, a note...

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My Day “Off”

Those that know me, know that I have a habit of having multiple beverages going at any given moment, and today was no exception. This morning I had: -Throat Coat tea to remedy a hoarse voice from teaching all weekend, while pretending not to have a cold, with ears...

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The True Face of “Resalire”

Resalire. It means "to spring back" and is the Latin root of the word "resilience." It is the foundation of My-Vida. Resalire. It is the crux of what is necessary when you or someone you love lives with a chronic illness or disabilities. Resalire. It comes in many...

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My Little Hope for Today…

Without prompting, suggestion, or knowledge that anyone was watching, he wrote this in the sand—“My-Vida”—as he felt the warmth of the sun on his cheek, the earth underneath him supporting his body, the calm constancy of the ocean in his ear, and, I can only hope, the...

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Saying “Yes”

Earlier today, I was many thousands of feet above the ocean below me, a couple of hours away from arriving in what I can only imagine will feel like paradise—a week on the island of Oahu with my wife and four kiddos.  This week will be filled with hula lessons, a...

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Key Experiences

I am very fortunate to have all four of my children attend one of, what I consider to be, the world's greatest learning environments, a little gem called Great River School, which is a Montessori school, for grades 1-12.  If you are unfamiliar with Montessori...

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Introducing…G’Bot!!

In the world of heroes, you may have heard of the greats, like Luke Skywalker, Wonder Woman, Captain Underpants, and the like.  However, all of those characters can consider themselves relics, now that G'Bot has arrived. What or who is G'Bot???  Well, it all started a...

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Who Will Get A Tissue for ME?

Today I attended the most tragic kind of funeral--that of a child, a child who only graced the world with their presence for a mere two months.  There are just no words that one can really offer during something like this--just lots of "I'm so sorries," extra long and...

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Embracing Imbalance

(A shared post written for Enlightened Mama) Balance. What does that mean anyway? Most of the time, it feels like some sort of enigma, a unicorn, or a that four-leaf clover we seek to find. Yet we talk about it, long for it, and strive to make it happen. We want the...

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The Anniversary of a Family

"I, Elizabeth, take you, Angela, to be my wife, my partner, my person, and my life.  I promise to be faithful, loving, loyal, and kind.  I vow to you and to our children to work together towards a life full of happiness, health, laughter, balance and color.  I promise...

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Food is Love

I've said it a million times--Food is love.  Food is what we do to show our love, to celebrate, to join together with friends and family, and the one thing that unifies us all as human beings, given the fact that we all eat, and across cultures, food plays a...

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20,531 Steps To Become a Hero

Over the last two days, we have walked. And walked. And walked.  It's been hot, humid, and we have brushed shoulders, elbows, and umbrellas/parasols with more people than I even imagined seeing in a lifetime.  We checked out Tiananmen Square, The Forbidden City, The...

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Lessons Learned from Two Days in China

Thus far, we are about two days into our adventures in Beijing, China.  While we still have a lot of traveling to experience, we have already learned many important things... First Class really is all that it's cracked up to be, at least on long international...

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Have Myotonic Dystrophy, Will Travel…

When it comes to my kids, like most parents, I want what is best for them.  Granted, all parents have a different definition of what exactly that means, but, for me, part of the “best” is giving them every opportunity to explore the world and experience new things. ...

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What Doesn’t Kill You, Makes You Braver

Today was like any other day, at least any other day for me. Okay, so maybe having one of my kiddos undergoing surgery is not something I do every day, but living with their ever-increasing medical needs, finding balance between work and caregiving, as well as trying...

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A Little Back Story…

On November 29, 2010, I was sitting alone at my kitchen table, drinking my coffee and checking my email, much like other mornings. Then, I received a phone call that would change my life completely. After 4 1/2 years of trying to figure out what was wrong with my son,...

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