Learning about a child’s rare diagnosis is kind of like being thrown into a stormy sea without a life vest- it’s a cold, dark place, and there is a real potential for drowning. Drowning in grief. Drowning in worry. Drowning in stress. Drowning in exhaustion.
Often the first things that are learned about a rare diagnosis are the seemingly inevitable challenges, struggles, and clinical labels. When both society and parents interpret these labels, the result is often perceptions, stereotypes, and limits on what can be achieved by a child. Coral received her diagnosis of Dup15q at 3 weeks old; in many ways, this was when she was put into an achievement box by society.
With Dup15q, some of the first things I learned were: Many kids have seizures (often difficult to control ones). Gross and fine motor challenges can be significant. Intellectual disability can range from mild to profound (depending in part upon the type of duplication). Many kids are on the autism spectrum and experience speech and language delays. It is not uncommon for expressive language to be absent or poor.
Translated into clinical labels this would be: epilepsy, global developmental delay, intellectual disability, autism spectrum disorder, and language disorder.
After learning all of this, I had several questions: Will Coral ever be potty trained? Will Coral ever talk? Will Coral ever read? What will Coral understand about the world around her? Will she need supervision and assistance for her whole life? What will her life look like? What will our family’s life look like?
To top it off, I learned that it is not uncommon for kids to lose previously learned skills (walking, talking, eating), as a result of severe seizures and the side effects of the accompanying medications. That was when this rare diagnosis looked me in the eye and said: How do you like them apples?
Now I will pause…Just think about looking into the tunnel of that diagnosis with a newborn at 3 weeks postpartum.
So, this is how it all started. Labels, perceived limits, and grief. To start to move forward on this totally unexpected path, I chose to be cautious in my expectations. (I mean look back at that list of labels Coral was likely to acquire.) I did not want to dream too much. I could not handle being crushed again. Of course, I wanted Coral to have the best outcome possible. But I didn’t say it out loud. I kept it to myself- in fear of making myself too vulnerable.
Now, inspired by the article, “Parents of Children with Developmental Disabilities Aim High,” I have decided to write down my hopes for Coral’s future. I know that my vision for Coral’s future is only my vision. Coral’s life is her own. Her path is a result of what we do as a family, but it is also a result of what she pursues and whether or not she faces certain medical issues in the future. Her path will also be a result of what society can or cannot accept about difference- the place there will be for her in the world.
I am dreaming big. I have big hopes for Coral, our family, and all of society. So, here it goes…
I have always said that I want Coral to be able to communicate, no matter what that looks like for her. And that is true. But I still hope that one day she talks using her own words. I can see her talking to communicate her preferences and her desires. Sometimes she talks to just be her happy and silly self- to share a part of herself with us. I cherish the sound of her voice and take no word for granted.
During her school years, Coral is happy and proud of her accomplishments. She is included and valued at her school and in her community. Coral’s class is diverse- full of both typically developing kids and kids with special needs. Every child has different abilities and disabilities. Teachers are granted the time and flexibility to guide kids in learning how to relate to other children who move, think, and act differently than expected. The academics come behind the humanity. I don’t expect typically developing kids to abandon all things typical to share every moment with Coral, but I see them taking some time to share in moments with her in her way. I see them taking time to get to know her. I see these kids learning as much from her, as she learns from them.
Coral loves the water and the beach. As she grows up, she learns how to swim. She plays, happy and carefree, in the sand and the water all summer long. Yes, she surfs (maybe tandem) with Tom, Tate, Aaron, and me.
As Coral becomes a young adult, I see her living somewhere where she has friends (maybe even a best friend). She has people who live with her who help her to accomplish her day’s goals. I see her working at something she loves- maybe with animals or around the water. She is involved in the community on a daily basis, not hidden away in the back of some business but in the front, meeting people and forming relationships. I see her attending college, if it is something that interests her.
Medically, if Coral’s seizures return, CBD oil and diet modifications work to control them. Also, Coral has access to a life-changing treatment (the result of the Dup15q Alliance’s research) focused on one or some of the specific genes that are duplicated.
As a family, we are unified, patient, mindful, and loving. Tom and I grow stronger, as we learn how to communicate effectively with each other through the stressful times. We have faith. Tate is a resilient, compassionate young man and a caring big brother. Aaron is a wonderful example to his little brother and sister. Everyone in the extended family loves Coral. She has her place at all family gatherings.
When I read over my hopes for Coral I find they are similar to what Tom and I hope for Aaron and Tate- health, happiness, and fulfillment through following their dreams. Coral may take far longer to accomplish some things, but ultimately if she learns to do something (even if it is marked by her own style), that is what matters. It is not a race.
Already being two years into the path, I also know that accomplishing these dreams will be the result of massive time and energy investments. Helping Coral to achieve whatever level of independence she can will take more work than most parents could fathom.
At the same time, I know to achieve this vision, I must release this vision and accept what comes to pass each day. Struggling against what is present in order to help her accomplish skills on my timeline takes away from the beauty and peace I envision for Coral and our family.
I also know that society has to step up to help make this possible. My vision has no space for fear and discomfort around disability. Parents, doctors, educators, therapists, and business owners need to be examples to the next generation of children of how to include and value people of all abilities.
The key to reimagining Coral’s future free from limiting labels is living as a family and a society with open eyes, open hearts, and mindfulness.
It truly takes a village. Let’s make this happen!
Please consider donating to the Dup15q Alliance on Giving Tuesday (November 27, 2018) or on any day. They have made a positive difference in not only Coral’s life but also our family’s life. (On Giving Tuesday, donate through the Dup15q Alliance’s Facebook page to have a chance for Facebook to match your donation.)
The Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2 – 13.1 duplication syndrome.
Donate to the Dup15q Alliance here