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I decide to make myself some tea and reach for a mug from the cupboard while my water heats up. I almost grab a “World’s Greatest Father” one but quickly opt against it. Though it is just a mug, it belongs to my father, and its faded image of some sort of nondescript animal wearing the dad-status badge is evidence that it has been well-loved, well-used, and is sacred for the man who has earned the title the mug has bestowed upon him. Instead, my hands accidentally, but very much on purpose, find another mug, equally faded and loved, with the most perfect words on it: “Home is where your nest is.”
A nest is a small structure that animals build in order to protect their young from the dangers and perils of life. While this doesn’t always work, and offspring will encounter unexpected tragedy, typically that hardship occurs outside of the nest, as the creature is learning how to navigate life on their own. When these challenges, foes, and less than ideal circumstances present themselves, the little ones will return to the nest– their place of safety, security, warmth, protection, love. Their home.
As I am sipping this tea, I am reflecting on the past nine years of my life, as yesterday it was precisely nine years ago that I received the news of Giacomo’s diagnosis of myotonic muscular dystrophy. At that time, I was just shy of two months away from finding out that my middle two children also have the same disease, and two months and two weeks from learning that my newborn baby, a child who was still cozy and protected in the nest of my uterus at that time, would share that fateful degenerative neuromuscular condition as well. I was at the end of a journey of four and a half years, in which I endured countless appointments, dozens of doctors, unanswered questions, and a heavy dose of gaslighting by the medical community in order to find someone to give me the answer I had been seeking.
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And what about me? What about my nest? My security? My home? Well, for starters, I am in it, quite literally, at the moment, as I sit cozied up under a blanket in the home that I have known for virtually my entire existence. Though things have not always been easy, (okay let’s face it–some things have been positively awful, even during the time spent living in this nest,) I find an enormous amount of peace, comfort, and safety here, with my own parents. The events of the last nine years have brought out the very best in my relationship with them (after dredging out and working through the very worst parts of it,) and they have reinforced the nest around me, as unspeakable events have occurred.
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