by Maria Colon
Doubt pours in with every decision that I make. It is the utmost, permeating emotion in my world, second only to guilt. On good days, I feel guilty about the little things—the split time between my two children, the not-so-organic dinner choices, and the less-than-attentive stay-at-home mommy they are lucky enough to call their own. On bad days, the guilt runs deeper, causing me to question every decision I have made. I worry about the decisions I have made, past and present, big and small, which have the largest and most lasting impacts on my children. I often wonder if I have made the “right calls” when it comes to my children who are medically complex.
Is growth hormone the best option for my four-year-old daughter? I hate giving her nightly injections, especially when she fights, as has become the norm in our home these past few months. Will they make a lasting difference in her projected growth?
Is holding all enteral feeds, causing my son to rely solely on Total Parental Nutrition, really what is best for him? This is a question that haunts me, as his intestines fail to process and absorb nutrients, and parental nutrition poses risks to his liver.
Should I spend more energy advocating for him and her?
The doubt I feel on a daily basis has found its way into my heart, my mind, and my soul. Nestled somewhere between my heart and mind, it has taken hold, giving way only to the guilt I feel in its absence. I have found myself doubting everything; care plans, treatment options, and my choices of each. I have found myself doubting doctors, medical professionals, and my own abilities as an advocate. In more recent days, my doubt has shifted, giving way to guilt, as I have begun to doubt my resolve on this journey as a parent to children with medical exceptionalities.
With the birth of my daughter in 2012, I was hopeful, shiny, and new, ready to take on the world of medical complexity with fervor and passion. When we adopted my son in November of 2015, I remained optimistic, hopeful, and eager to tackle his medical challenges. After his adoption, the road was supposed to be one of forward momentum, which has not been the case. Multiple and lengthy hospital admissions mark our two-and-a-half years together. His most recent stay, a twelve-week admission at our local children’s hospital, has left me guilt-ridden, doubtful about his future, mine, and that of our family.
As the days have turned into months have turned into years, I have become less shiny. I have become jaded and guilt-ridden under the pressure of raising children with exceptional needs. I hate to admit it, as admitting my deficits further feeds my self-doubt, but here I am, writing away about all the ways I have failed.
Each and every day presents a new set of challenges; yet, it is unmistakably similar to the day before. My life has become the movie Groundhog Day. I rise each morning, scurrying through morning routines with my daughter and rush out the door to be at the hospital with my son. Fast forward through six hours of rounds, medical protocols, and limited interactions with adults later, and it’s time to return home to my eldest child.
While at the hospital, I am devoted solely to him, yet find myself worrying about her. How is her day going? Did she eat enough for lunch; what did she have for lunch? Does she miss me? I know she does, as she has taken to asking me to stay on my way out the door each morning.
After an exhausting day at the hospital with him, I will return home to her. Exhausted and emotionally wearing thin, I will do my best, which is nowhere near good enough, to parent her, to be there. All the while that I am home I miss him, and wonder…What is he doing? Is he lonely in my absence? What if he needs me, and I am not there?
I am torn, divided between home and the hospital, my son and my daughter. I am exhausted, trying to dedicate myself completely to each child, yet failing to maintain my ability to advocate for either. I am guilt-ridden and full of self-doubt, my decorum faltering.
I reassure myself I am doing the best that I can, but I wonder deep down, in the darkest of hiding places in my soul…Is it good enough? Am I strong enough?
Only time will tell.