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, after dozens of clueless doctors, after countless accusations of my overreaction and that he was “fine,”….I had my answer. “Giacomo has tested positive for myotonic muscular dystrophy.” Those words are forever in my ear. I had no clue what that meant, so headed to Google and landed at www.myotonic.org (which is the best website to check out if you want an understanding of this disease and a great place to donate if you’re looking to support our cause!) Two months later, the day after birthing my fourth child, I would get the news that my daughter, Gianna, and son, Luck, also had myotonic dystrophy, and two weeks later, Isadora’s test results would come back positive as well–four kids, each with the same degenerative neuromuscular disease, with no cure. The disease affects nearly every single organ system in the body, interrupting the electrical currents that communicate with the muscles of the body, as well as causing deficit of the frontal lobe of the brain, impacting cognitive functioning, memory, and emotional intelligence. While it changes many parts of their normal functioning, presents daily challenges, and compromises their health in many ways, these four children are the most amazing humans on the planet. What they may lack in brain functioning, they more than make up for by having the biggest hearts, full of love, laughter, and kindness. They are wise beyond anyone’s years, and have taught me things that I could never have learned in any classroom, read in any book, or listened to in any lecture. They are my heart, my soul, and the lifeblood that runs through my veins, my every inhale and every exhale. They are proof that angels exist, and they are the thing that I am, and always will be, most grateful to have in my life. They are my home, my family, and my reason for everything that I do. Thank you, to whatever higher power exists, for giving me these creatures to call my children.
“If you’re going through hell, keep going.”
For last night’s midterm, I needed to memorize the definition of the word “trajectory,” as it relates to one’s life, stated as “Relatively stable long-term processes and patterns of events, involving multiple transitions.” As I
The Coronavirus Slide
About five minutes before Gianna shot these pics of our spontaneous dancing to the Cha Cha Slide, (which I’m clearly not very skilled at, but do have the ability to laugh at myself whilst doing,)
Life Imitates Birth, As Per Usual
Nine months ago today, a new life was conceived. Nine months ago today, I began my day by walking my son into an operating room, for a pseudo-routine jaw surgery, as much as any surgery
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
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
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