Medical diagnoses and conditions are not life sentences; they are secondary to the beauty and magic of the unwavering human spirit. This is just one lesson that my son Jonah has taught me.
The Dream and the Diagnosis
From the moment I knew I was pregnant, I dreamed of holding, playing with, loving unconditionally, and nurturing my child. I dreamed of Jonah’s eyes, his first steps, his voice, play dates, his first day of school, and what his personality would be like. I even dreamed of him graduating from high school and college, moving out on his own and him falling in love.
I was home alone on the day the test results came in; when I learned he had 18q- syndrome (a small deletion on his 18th chromosome). I Googled the diagnosis because I had no idea what this meant for his future.
Numerous articles focused on the things individuals with 18q- syndrome couldn’t do, and the countless dehumanizing photos of listless individuals left me grieving the loss of all my dreams for my son in a matter of moments. It was like someone had pushed me off the most beautiful mountain and into a dark, cold pit of despair.
Photography with a Mission
It was not until I found Positive Exposure and Rick Guidotti’s photography of individuals with genetic conditions that I found hope – in seeing the Jonah I knew. In Rick’s images of chromosome 18 abnormalities, I saw joy and life. This is how I wanted the medical community to see my son.
But how would I get others to see Jonah the way I see him? Keeping in mind the few positive images that had imprinted hope into this diagnosis, I began sharing personal photos of Jonah at home, happy, and making progress.
These photos captured his spirit beyond this array of various medical diagnoses, which include moderate conductive bilateral hearing loss, nystagmus, strabismus, reflux, farsightedness, dysphagia, hypotonia, non-verbal, severe growth hormone deficiency, developmental delay, congenital birth defects, asthma, eczema, pragmatic language disorder, autism, and anxiety, among others.
Beyond these diagnoses, Jonah is just Jonah: Happy, loving, smart, funny, hard-working and, most of all, determined. He NEVER gives up. Maybe if people look at him in a picture as just my son, the way I do, they would look at his future and prognosis differently.
Navigating the Healthcare Landscape
It was Jonah’s pediatrician who helped me realize I was going to have to become my son’s expert, informing healthcare professionals and the community about how this rare condition affected Jonah.
Our doctor promised me that I could count on him to help me advocate for my son. His deep respect of Jonah and I gave me the foundation of strength that we needed to fight this fight. He sees Jonah first, despite knowing all of his challenges.
By raising Jonah, I’ve learned the importance of successful advocacy, but also how overwhelming and unknown that territory is when you don’t have the proper support or tools to be successful. The language itself is very foreign and intimidating when you are not a trained professional.
The early intervention my son received from his dedicated therapists at ProMedica Total Rehab, as well as our pediatrician and our myriad of specialists, was incredible and life changing.
As a team, we all focused on his unique strengths and explored ways to help him overcome his challenges with the same goal: Jonah’s health and well-being. The relationships formed between physician, patient, parent, therapists, and students were educational, genuine, positive, inspirational and, most importantly, empowering.
I am beginning to hear Jonah’s voice and there is no doubt that he is going to determine his own future. No medical textbooks tell you that about genetic conditions.
Relying on Patient & Family-Centered Care
As years of advocacy went by, I met more families facing similar challenges, and I realized how immense this misconception was of children living with genetic differences and special healthcare needs.
As Jonah’s mom, I had the ability to educate and enlighten our immediate community, his healthcare providers, family members, neighbors, teachers and classmates for them to value his worth.
But what would happen to him if I was not around?
Who will help others see his beauty and potential?
I don’t want my son to be a victim of bullying, solitude, decreased self-esteem, and a stigma attached to his challenges throughout his life. I want him to live happily in this community and enjoy all that life has to offer! This is a reality MANY families face and often feel defeated by. How do we get our community to see our children as beautiful talented human beings that deserve to be treated with respect and dignity?
Then I discovered ProMedica Toledo Children’s Hospital’s Family Advisory Council – the voice of patients and families. Toledo Children’s Hospital has a mirrored healthcare initiative called Patient and Family-Centered Care, which involves the concepts of Respect and Dignity, Information Sharing, Participation and Collaboration. It involves all the great things I have experienced in advocating for Jonah. This council is a partnership of families and staff who promote patient and family-centered care and enhance the delivery of health care at Toledo Children’s Hospital.
Being Well-Connected and Seeing Beyond the Frame
Beyond the Frame is a way of showing our shared humanity and the beauty of individuality. ProMedica is a community made of individuals with stories, and I think it’s time we all see how amazing our patients, families, and staff are.
Let’s see the talent, creativity, strength, and perfection in uniqueness. Let’s steady our gaze, smile at one another, and have compassion for one another’s stories.
To me, being well-connected, means we are collaborating in positive honest partnerships supporting one another and OUR children to build a stronger foundation for OUR community.
There is a quote by Rick Guidotti of Positive Exposure: “Change how you see. See how you change.” Let’s all change how we see and see one another Beyond the Frame.
Mary Borucki has served on the ProMedica Toledo Children’s Hospital Family Advisory Council since 2007 and is currently the chairperson. She is a hospital volunteer and a parent mentor. Mary and Jonah are subjects in ProMedica Toledo Children’s Hospital’s Beyond the Frame photo exhibit, on permanent display inside the ProMedica Toledo Children’s Hospital main entrance hallway. To connect with Mary and Jonah, and other participants in the Beyond the Frame project, please use #BeyondTheFrame to share positive words of inspiration and encouragement.