October 10, 2018

From Emily Fern Dayton, MS

After weeks of monitoring my high-risk pregnancy, at 8.5 months I had a procedure called amniocentesis. An extremely long needle draws amniotic fluid for genetic testing, luckily they found results. A genetic counselor gave us a packet on the baby’s diagnosis and advised us, “We don’t do abortions here, but I can direct you where to go . . . I know most people don’t say the ‘R’ word anymore but the medical term is ‘mentally retarded.’” I was mortified, it was as if my child was viewed as not worthy to be alive and considered a burden.

My daughter was born with a rare de novo chromosomal deletion known as Wolf Hirschhorn Syndrome. Contrary to genetic advising, she has been a wonderful gift to our lives. We continue to learn and grow along with her despite regular crises from medical emergencies, ambulance rides, seizures, and our continuous fight for her survival. We have a large team of professionals who support our daughter’s ongoing medical needs, but there is often a lack of emotional support and care. As an educator and former social worker, I have had to continually advocate to get informed consent, compassionate communication, empathetic support, and understanding in a setting that feels dominated by ableism.

For example, after a brain MRI the neonatal intensive care unit (NICU) doctor reported unemotionally stating, “essentially she was born with holes in her brain, and she will never be normal.” Prior to this assertion, she walked in the room with a medical student and without asking, proceeded to take off my daughters diaper and show her genitalia to the student. “You see this is what can be observed in such patients  . . .” she proclaimed.

Trauma informed care (TIC) is an important aspect of a successful medical facility. From a client’s perspective, soft skills are equally as important as medical knowledge and intellect. A clinician who takes the time to communicate with my daughter in a humane manner, and check in with how our family is coping, gains our family’s trust. When children have a rare syndrome, it is important to listen to parents, who are often well versed in their child’s unique needs, daily concerns, and complicated medical history. Children who have frequent emergencies and hospitalizations can present with symptoms of PTSD and bodily stored trauma. My daughter in particular is often anxious when in doctor’s offices and with new specialists. She will physically go limp in my arms once we enter a facility. Once we are outside, post appointment, she will sigh and become herself again.

I recall a stay at the pediatric intensive care unit (PICU) with my daughter. We arrived at 4 a.m., Juniper was not cognizant, and I was exhausted, triggered, and visibly shaking. This time the nurse and hospitalist entered calmly. I recall the doctor bent down to smile at my daughter and gently touched her foot. She calmly explained the next steps, asked if I agreed with the process, and asked what our needs were at that moment. She was attentive, empathetic, and extremely caring, she was following a client-centered, trauma-informed approach that assisted in making my family feel safe and secure while Juniper was in her care. My hope is that medical facilities will transform into centers for healing and support, and follow a model that honors client’s diverse needs in a gentle, loving, and empathetic manner.

Summertime Blues

July, hot dogs, ice cream, sunburns, swimming and fireworks.

Giggling, giddy children racing down searing sidewalks, squirt guns in hand.

“Don’t worry, Summer is just around the corner, life will ease, cheer up”.

Purple lips, tiny trembling hands, eyes wide, fear, grasping for air.

Birds chirping, neighbors laughing, charred meat sears the air.

Dichotomy of lives lived outside these walls.

Sweat, saliva and vomit slide down my arm, my child is back. Gazing in gratitude at my presence she collapses into a deep slumber (postictal our neurologist states).

A sort of comatose sleep that scares the shit out me. So silent, so still.

I grasp tiny pink toes, movement, I exhale, life resumes.

July brings sadness, seizures, sickness.

For 4 July’s we’ve had hospital stays, ambulance rides and frantic numbness.

I can’t seem to scrub the hospital smell from Junipers clothes and body, just permeating, awaiting…

Sirens blare, others unaware.

Clenched fists, knuckles white

Reaching for an unforeseen miracle, a transformation to bring relief for this fragile 19lb frame.

If you understood would you listen?

Listen and accept that life may not get easier.

Help and assist without being asked

Love for the sake of loving

Be here in the now, no matter the challenges, defeats and joys.

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Emily Fern Dayton, MS is an educational facilitator, and a fierce advocate for her daughter Juniper who teaches her daily life lessons on patience, ableism, and living fully in the present moment.