by Maria Colon
Recently my therapist–yes, I see a therapist–asked me what, if anything, I would want people to know about me. Not what I want them to think, but what if, in a perfect world, free of judgment, I would want people to actually know and understand.
As the mother and primary caregiver of two children with medical needs, this was a loaded question to me. I often censor my words and thoughts to give people the most positive view possible. But after careful consideration, it dawned on me that if I was being truly honest, there were a few things I need people in my world to know.
I am exhausted, every minute, every day. I might not look it, thanks to some serious makeup, but I am. There is no such thing as downtime in my world. From the time I wake up until the time I go to bed, I am in a constant state of motion, tackling to-do list after to-do list. My phone ringer is never off, even when I am at the gym, just in case something, somewhere goes wrong, or a specialist calls. I am on call 24/7.
I am overscheduled. As the mother of two children with medical needs, the list of things I do during a week is long, repetitive, and unpredictably predictable. Monday through Sunday my world is scheduled. We have twelve hours of early intervention services each week, and countless skills we need to work on outside those hours. Between therapies and doctor’s appointments, my refrigerator calendar looks like a color-coded nightmare. Maiya’s schedule is in purple; her brother’s is in orange. My husband’s extracurricular activities are written neatly in black, symbolic of the gloom and doom I feel on the days where it’s a solid 14 hours of just me and the kids. (I’m kidding, kind of). Travel dates, his–not mine, appear in green, marking the weeks he will be lucky enough to sleep alone, uninterrupted for eight hours, while gone for business.
Every few weeks my color, magenta, shows up. It’s never anything fun, more often than not a therapy appointment, or if I’m lucky a quick trip to the grocery store kid-free. I know, I know. I have been told dozens of times to take some time for “me.” But to be honest, I don’t even know what that would look like. Between the stay-at-home mommy duties, and the constant barrage of medical interventions in my life, there are days when I am barely able to keep my head above water. Thank god my mother made me take swim lessons when I was five. Who would have thought treading water was a skill I would need?
Do I need a break? I sure do. Do I feel guilty over asking for one? Absolutely.
I am anxious and irritable, guilt-ridden when I shouldn’t be. I worry about things that I have no control over, obsessing about undiscovered variables that I will never be able to change. Like how much of my almost three-year-old daughter’s body will calcify in the next ten years, or what hormone will she develop a resistance to next. I will lie awake at night, worrying about my two-year-old son wrapping his feeding tube around his neck in the middle of the night, or wondering if he will have gained weight at his next weekly home nursing appointment (he won’t do either of these things). I yearn for answers that I am never going to have, all the while pretending I am okay with the uncertainty.
I don’t want you to remind me that I am blessed. I know that I am. Both of my children have battled for their place on this earth. Both of my children have overcome the challenges of prematurity, infection, and bleak life expectancies. Both of my children are miracles. Of this I am well aware. But that doesn’t mean I need to walk around spouting sunshine and rainbows while riding my purple unicorn. I try to, but there are days when it’s just not in the cards.
I am not alone, but I am lonely. Believe it or not, medical practitioners and therapists don’t make the best company. (Sorry folks). Neither do two toddlers under the age of three. As much as I love my children and cherish my time with them, I miss having contact or a life outside my home. Actually, what I miss is adult conversation, conversation that doesn’t require me to decipher my daughter’s speech in order to figure out the point or determine what my not-yet verbal son needs from his screaming. Yet, as much as I yearn for adult conversation, I find myself avoiding it at all costs for fear I will blurt out the theme song to Doc McStuffins.
For everything that I share, each detail of my life I give you, there are a hundred more that I cannot. It’s not that I don’t want to. But if I shared every thought, every worry, every question in my head one of two things would happen. 1) I would be shipped off to the funny farm and seriously medicated; or 2) I would depress you into never returning to my world. I am well aware that I can be a Debbie downer, so I slap a smile on my face, a cape on my back, and take my world head on like superwoman, all the while praying you don’t notice that’s a facade (secretly I am hoping that you do).
But above all else, what I need you to know, what I need you to understand is that as resilient as I am still beautifully human. Nothing more, nothing less.