I understand that doctors try to give families an honest warning in a prognosis, yet it only gives us one potential outcome. Parents share the discrepancies between prognosis and reality all the time. We learn later that prognosis will not give us the big picture of what is possible. We emerged from a standpoint of being braced for the worst, hoping it wouldn’t be that bad. Like many micro preemies, my daughter, Zoey, emerged from hospitals with the idea of “challenge accepted.”
Over the years, I met with many specialists to advise me about the severity of my daughter’s medical issues and her variety of special needs. Like so many parents getting news about disabilities and developmental delays, I wondered, “What does this mean for us?” There was no one to give me a picture of how physical or cognitive disabilities would impact our family.
I worked in mental health as an art therapist with children. What I knew was trauma and resilience. People have problems, hope for change and seek creative solutions. Everyone seeks love and acceptance. In my work with brain injuries, I knew that the brain could remap itself with fun activities. My hope in the NICU was that her brain would spark over the dark areas. I had an idea of what she would need to overcome medial trauma.
I had no clear picture of what physical disabilities meant. When my daughter had her tracheostomy, she was the first person I ever saw or knew who had a trach tube. When they rolled in the KidKart, it just seemed like a fancy stroller to me. They meant for it to be more permanent, but it wasn’t in my nature to think that way. The physical care of the tubes and equipment terrified me. Yet I emerged from fear, determined to do my best for her. Zoey seemed happier with her new freedom from intubation. She emerged from the NICU after nearly a year with a list of diagnoses and cerebral palsy that was expected to be severe in form. Our family emerged excited to be home together, but scared too.
I’ve watched my little one emerge from physical paralysis, surgeries and illnesses. I’ve watched her develop an expressive voice after years of no sound. The cerebral palsy that threatened her whole body? Zoey learned to walk, run and dance in therapy. She plays drums with skill that surpasses mine. She still has involuntary movements and motor planning issues. She has emerged from being a frail baby into a strong, determined individual who happens to have disabilities.
We’ve emerged from the NICU and PICUs. I savored sharing the types of childhood experiences that I had: playing outside on a sunny day, roasting s’mores over a campfire, playing board games with our neighbors, watching snowfall and sunsets, naming the deer in our yard, snuggling up for movies. At age 11, her last baby tooth is almost gone. She wants more time to herself and with her friends. We continue to travel. Every few months, I review our goals. We build in time for special events, family, friends.
Zoey forced her own prognosis to be revised from “failure to thrive” to “poor” to “good.” All I have ever known is that the experts didn’t expect her to live long. So we again emerge into the unknown. I have no clear idea how her disabilities will impact her future, as it unfolds. We have come to this place of pushing the limits of what is possible during her lifetime.
In those early days of the NICU, no one told me not to worry. No one told me that in a decade, we would go to Walt Disney World, have a great time and meet other Make-A-Wish families. No one told me how social she would be or how often she would make people smile. No one told me how much I would love being a mom. No one tells us all of the great potential our babies in the NICU actually have. No one tells us that we have great potential as parents to be more than enough. We are often handed an intimidating list of diagnoses and prognoses, and we panic. We do the best we can with that information.
So I can say it now that we have no idea what we are capable of until we try. We can be creative, innovative. We can honor our need for a meaningful life and time to play. I will always have hope that labels will not define who we are but will challenge us to do the impossible. Emerging from fear is the most important thing we can do, because the potential is there for resilience, creativity and love.