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A Journey Beyond Sound (Jane McCabe)

Jane M. McCabe

A Journey Beyond Sound (Jane McCabe)

A Journey Beyond Sound: Lessons From Kalea’s Path to Strength & Purpose 

Two weeks ago,  my daughter Kalea turned 21.  How did this happen? Each year, as the birthdays of my children approach, I am reminded of those early days and years of their lives, and the dreams and hopes I had for them.

 

A few weeks ago, I had the privilege of spending an afternoon shadowing Dr. Howard Goodkin in the epilepsy clinic at UVA in Charlottesville, Virginia. I love spending time with our PERC members in their work environments, and especially learning more about pediatric epilepsy and seeing first hand the struggles of so many families and children with epilepsy. There was one young couple in the epilepsy clinic with a four month old baby, newly diagnosed with a genetic variant for seizures, not yet expressed. Seeing their concern and trying to understand how to best support their child, brought back a flood of memories of my own family's journey and the fears and worries I had for my own daughter.

 

Kalea went deaf at the age of 5 years old, which started around 3 years of age, caused by a genetic mutation, still not identified. I remember the terror and grief when I was told she would never learn to speak, or attend a regular school, or have a "normal" life. As so many parents that I have met in similar situations,  I became that "mama warrior" and did all that I could to support and advocate for my daughter. I was blessed to have every resource at my disposal: time, financial resources, contacts, good health insurance, and the will to do whatever was necessary for her to thrive, deaf or not. She was one of the fortunate ones. She received a cochlear implant in the fall of 2008 at Johns Hopkins, and because she had access to sound as an infant, has been a very successful cochlear implant recipient. She is currently a rising junior on the Dean's List at the University of Wisconsin at Madison, and is giving her time to PERC this summer as an unpaid marketing intern, working on our new website and social media channels.

 

As I reflect on those early days, weeks, and months after her diagnosis of profound deafness, I remember what sustained me during that time and how I was able to cope, survive, and manage so many challenging emotions. The most important action I took was reaching out to my family and friends for emotional support. Just talking through my fears and challenges calmed me tremendously. Reaching out and networking with other parents of deaf children gave me the support I needed that I was not on this journey alone, that others had preceded me and that I did not have to reinvent the wheel. Taking care of my own needs was also important. I made sure to get outside every day to exercise, to get my sleep, to nourish myself physically, spiritually, and emotionally. That meant hiring babysitters at times and relying on friends and family to watch my kids while I took care of myself. I cannot emphasize this point enough!

 

The best advice I received was from a physician with a deaf daughter. She gave me such a gift. She told me that although at the time I would identify Kalea as “my DEAF daughter” that over time, her deafness would not define her, that it would slowly become a PART of her, but it was NOT HER. And that I needed to accept that this was the journey of her life, that I could advocate and support her, but her life would include this challenge, just like every life has its own unique challenges. And that the best thing I could do for her, was to not feel sorry for her (or myself, for that matter), and let her live as normal a life as possible, without coddling her. Not easy to do at times, but I kept this intention as my “North Star” and I have to say, 16 years later, it has served her well. When she was younger, she would come home from school and cry, and ask me why she had to be deaf. And I would hold her in my arms and tell her that I could not change that for her, but she would find her way in this life and would be ok. And in the end, she is “ok.” She is “more than ok.” She is a beautiful, kind, intelligent and hard working young woman who has overcome significant obstacles to become the person she was meant to be. And when I look around me at all the suffering in this world, I am so grateful that my daughter is “just deaf.” I wouldn’t have her any other way.

 

Jane M. McCabe

Executive Director

Pediatric Epilepsy Research Consortium