Adonise as an infant in the NICU, held upright by his parents, who have expressions of pure love and joy on their faces. Adonise wears a bright green and yellow outfit, accentuated with red trim. He is connected to the usual NICU supports, such as a pulse/ox and a breathing tube.
There was a time while I was caring for Adonise as an infant in the NICU when people tried to apologize for things they did not understand about my son. The unknown and the undescribed. He spent 361 days in the neonatal intensive care unit (NICU), where he received a tracheostomy to help him breathe, and was diagnosed with cerebral palsy.
Adonise is now 5 years old, and he loves flying, attending school, and spending time with his family, especially our large family gatherings. Adonise dances and lives in joy. Since the NICU, in addition to his tracheostomy and cerebral palsy diagnosis, he has also been identified as Autistic. He lives a blessed life, with many adventures and full of love, but the nights from the NICU still stay with me.
Many days I listened to medical professionals attempt to describe the life my son would lead with all his “challenges,” as they called them. I once asked an ICU attending physician, “Who gets to define what a ‘challenge’ is?” These complex medical elements may be part of Adonise’s life, but we shouldn’t describe them as “difficulties” or “challenges.”
That first year, Adonise spent time in two NICUs: one in New York City, and one in Columbus, Ohio. In Ohio, the staff did a better job aligning parents with parent advocates who could speak to the very specific lived experiences our family was facing. Although this helped us, I often think how much more powerful it could have been if we had built more relationships with adults with disabilities in the NICU. Neurodivergent adults provide a different perspective on what life can be for our children. We can learn from hospital staff about tracheostomy life or G-tube care, but my adult friends who have trachs constantly provided perspectives that helped me navigate my son's disability as a partnership.
These partnerships are important to our children’s futures. Medically complex children are socialized as if they will have less fulfilling lives, and this socialization often starts in a medical setting. Most of the time we can assume that medical professionals are not living with medically complex needs, they are ‘clocking in’ to them. They evaluate scans, they assess your child, they bring you into a room, and they ‘med-splain’ a diagnosis or condition that will become part of your child’s life. There is so much gloom and doom instead of focusing on the rich opportunities associated with a new diagnosis. Is it fair to provide “information” on a diagnosis as if it is a disease? Is that the way we need to frame life changes?
Ableism has always taken a front-row seat on these journeys. Medical professionals assume they can explain what life will be like with a diagnosis or medical intervention. Why do doctors and nurses feel they have the right to illustrate a life they only understand through the lens of a professional, not a personal context?
Adonise lies in a hospital bassinet while his dad stands over him, holding a Dr. Seuss book so Adonise can see the pictures and reading aloud. Both look content.
Adonise was constantly confronted with ableism I wasn't then prepared to advocate against. Since he couldn’t speak up for himself as an infant, we as his parents had to deal with medical professionals and their fear-based advice masked as expertise. Every time we were given any instruction, the tone was always pity, and it frustrated me. It was truly all gloom and doom to them.
Then one day I met a neurologist who taught me a lesson I will never forget. Part of advocacy is coming to terms with who you were before you had the right education. After all these doctors gave us their opinions on Adonise, I asked to speak to a neurologist because, in my limited view of children's development, I assumed a neurologist would have the answers.
I would encounter this doctor twice. The first time would be at Adonise’s bedside where she said, "I do not have a crystal ball, Anne. I cannot and will not tell you what your child’s future will be." I remember being so upset with her. I remember thinking to myself, you left your office to come and tell me nothing and still bill hours?
A year later, we had our scheduled neurology follow-up by phone, one-year post-hospital. We had adjusted well to our new lives. We got on that call, and I immediately recognized the neurologist from Adonise’s bedside, and I burst into tears. I now understood why she refused to tell me about my child's future: nobody can tell you what your child's life will be like. No one should have that authority.
Life is truly what you make it. Adonise would not be defined by anyone, and he has grown into a remarkable boy. His life is a testament to the fact that we all have the power to shape our own destinies. Words cannot express how thankful we were to everyone who worked around the clock to save his life. However, if more staff and physicians were exposed to more medical complex journeys from various disabled adult perspectives, maybe they could help inspire children and families to think beyond their diagnosis. How can we get such policies in place to empower our families?
Anne Louis is Adonise and Adriande’s mom. Anne is a family advocate representing Harlem, NYC. She is a digital technology professional who currently works for Charter Communications. Anne speaks several languages, but aspires to become more fluent in disability policy. She is passionate about her Haitian heritage, and is eager to be a bridge between complicated policy paperwork and the quality care everyone deserves regardless of their education or ability to speak English.
