Sometimes, you can feel it happening within every fiber of your being. Sometimes, it sneaks up on you without any notice or warning. I call it, “the Shift” — that hard- to- describe feeling of self change and growth that seems to happen almost overnight, and you wake up a new “you.” Except, it doesn’t really happen over night, but over months or even years. Tests of strength, personal traumas, spiritual awakenings, unforeseen events — whether big or small, happy or sad, personal or merely witnessed, build up like an intricate maze of dominoes only to be knocked down to reveal something new. In this case, a new sense of self.
Since my son was born, little dominoes of surgeries, procedures, sacrifices, sorrow, loss, and grief have been outnumbering those of pure joy, unadulterated fun, and happiness. With each new diagnosis, each new death, each new sacrifice — I felt myself getting closer and closer to bursting at the seams. My life as I knew it kept changing — without my permission, mind you. With a new diagnosis of a weakened immune system, and no improvement with the first course of treatment, I knew that I would be staying home a lot more than I ever anticipated. To my family it looks like this: everyone who enters our home must wash their hands and not have an inkling of sickness, must be vaccinated (my son doesn’t make antibodies even with vaccines and booster shots. I rely on others to help keep him alive — no exaggeration), everything must be wiped down and disinfected, clothes must be washed if I’ve been out in public before handling my son, and I have to be strategic about where and when I go out with him. Will there be a lot of people around? Will there be a lot of children around? Will there be close contact with others? Are the “others” people we know and trust, and can ask specific hygiene routines of? Or are they strangers? I hesitate to go back to work because I can’t get sick either. What if my client is sick? Or coming down with a sickness and doesn’t know it? What if my client has been around children or others who are sick? As my son’s primary caregiver, if I see someone coughing or sneezing around me — I’m out of there as soon as I can be! I can’t be the reason he gets sick.
I realized the other day that I hadn’t filled my gas tank up in over a month. That’s how much I don’t leave my house. During a recent recording session, my friends were talking about life with such ease and joy, and I realized I had lost my social skills. That, or, my social life is just going to doctors appointments — which I’ve become very good at. Shooting the sh*t with friends on the other hand — not so good at it anymore. My thoughts have been overwhelmed with protecting my kid from illness, ordering medical equipment, filling out paperwork, and quite frankly, with the fear of outliving my child. Our cardiologists (all three of them) have asked what my son’s life expectancy is, having a rare diagnosis and all. And as frustrating as that question is, it’s completely valid. They are weighing the risks and benefits of open heart surgery for a very complicated child. Why do something so risky if the side effects of his heart condition may never be experienced due to a shorter life expectancy?
This is my life. This is my new normal.
I know anything can happen, at anytime, to anyone - regardless of one’s health. I could get hit by a bus. But, that is a naive way of thinking in my world, and one that does not address our reality. In addition to these life changes we’ve had to make, another baby with Oskie’s diagnosis passed away, and a friend of mine lost her babies mid-pregnancy. Although they weren’t my personal losses, I grieved so much for them because I felt the pain of losing a baby in my miscarriage last year, and I have extreme anxiety over losing my son. Seeing these losses so close to home only make that fear more pronounced, and mostly I’m just devastated for these women.
The grief, anxiety, and depression have manifested themselves in some pesky health issues in my own body — I won’t bore you with details (think Peri-Menopause and gut health). Something had to give, and I decided to go way outside my comfort zone and live outside of the box. Key word, live. I booked tickets to Miami for me and my son to live with my parents for a month. I experienced a shift, a new sense of self, who lives by these two very wise words:
Life is short, and unpredictable. In the event you are interested in learning how to live the “F*ck It” sort of life, I’ve made myself a guinea pig. Here’s what works, in my humble opinion.
Step 1: Eat.
Stop counting calories, starting new diets, and looking at the scale. Eat real food and exercise as much as you can without feeling guilty for missing workouts or eating treats. We all know what is healthy and what isn’t. You need calories to survive and thrive, so eat. Like, seriously, stop starving yourself. Skinny isn’t everything. Your genetics play a big role in your body type. So “F*ck it” and eat so you don’t pass out.
Step 2: Get a Tattoo (optional)
Nothing like trying to get away from clinical, medical environments than to have a needle in your arm for three and a half hours, am I right? Ha! I did it. I researched the hell out of artists and tattoo shops, and the design I wanted, but I did it. Sorry, not sorry, grandma! I love my tattoo and what it symbolizes. “F*ck it.”
Step 3: Be Happy for Other People
‘Cause, Karma. Also, other people around you will fall in love, get married, have babies, get promotions, buy new houses, and all that good stuff while you are experiencing your darkest of days. That’s Life. You won’t spontaneously combust for being happy for someone else, so “F*ck It.” Your life sucks right now, but Jane Doe’s doesn’t, and that’s okay. You might even get some relief from your sorrows by allowing yourself the experience of happiness — even if it isn’t for yourself.
Step 4: Love Yourself, Warts and All.
Easier said than done. If you find yourself thinking negatively of yourself, replace that thought with something positive — or at least less negative. I gave up negative self talk for Lent once, and it changed me. I try to practice it full time, but I’m still a work in progress. Love that about yourself, the fact that you don’t know everything, and never will. Love the fact that you have qualities that are unique, and have knowledge that other people don’t, and in turn, love the fact that other people are better trained than you in many areas. “F*ck it”, you can’t learn everything in one lifetime.
Step 5: Ignore Me.
You do you, boo. This is my journey in self love, in life, and in acceptance. If this doesn’t resonate with you, ignore me. No hard feelings. If it inspires you — awesome! I’m glad you find this advice relatable. I’m not trying to have all the answers, and I’m certainly not trying to tell you how you should live. I’m just putting myself out there in the event that my story is the road map for someone else’s dark moments — as others have been for mine.
So, there you have it. I’ve experienced a shift, and I’m gonna ride that wave for as long as I can. I feel more at peace, I feel — dare I say — happier, and I’m not scared. I’m here for it all — the ups, downs, and in between. Who knows how long this might last, but I’m sure as hell gonna enjoy it while it’s here. Plus, I’m half Cuban — so I’m really good at dominoes.