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 belated Thanksgiving with my family, but is currently dozing so she can cover the next half of the night in a rested manner.)
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.
That answer, however, put my family on a whole other journey of this disease, which brings with it countless appointments, dozens of doctors, even more unanswered questions, and an even stronger dose of gaslighting by the medical community, as well as the multitude of other systems that I have been thrust into. It has altered virtually every element of my life, filtered out negative relationships and people that were not serving me and/or my children well, brought in phenomenal people and relationships to me and/or my children that were precisely what we needed, and has inspired me to create an even bigger, closer, and more resilient nest that is our home than I ever imagined that I would. This is critical because these children are unlikely to stray too far from our nest as they grow. Their needs will continue to be such that they will always need this level of safety and protection, and they will need this home, this nest I have created for them, even as we move from one physical home to the next.
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.
In these difficult times, those additional aforementioned phenomenal people that surround me have also added to this nest of security, giving me strength, encouragement, and support to keep moving forward, knowing that I, too, just like my children, will need ongoing safety, protection, and unconditional love as I navigate this unknown path of life. To say that I am grateful doesn’t even scratch the surface. The best part is that I know they’re not going anywhere and will continue to be here for the kiddos and myself, throughout time, distance, and circumstance.
Lastly, I am going to give myself a little bit of credit. The nest I have created for my children is one that I have built and rebuilt, over time. Though it is solid and strong and warm and loving and all those good things, it has been hard. I nearly lost myself a few times in doing so, letting past events, trauma, self-doubt, and certain relationships weaken some parts and toughen others. However, all that is changing. I am finding new tools, greater resilience, confidence, and a creator in me that I never knew existed. I am welcoming back into my life all of the incredible people surrounding me that have been there all along, in a deeper, more meaningful way, as well as inviting new ones in, by being vulnerable, open, and asking for help. I am finding my way home, and that feels fabulous, but also incredibly necessary.