Strength, Beauty, and Resilience: A Journey of Friendship and Hope

Strength, Beauty, and Resilience: A Journey of Friendship and Hope

I first met Kym when my own daughter was diagnosed with a rare genetic disorder called Hurler Syndrome. I found Kym online, a name picked at random from a list of names emailed to me by the National MPS Society, an organization that provides family support and advocacy, raises awareness and funds research for the broader family of MPS disorders (of which Hurler syndrome is one). I was told my daughter might not make it until the age of ten. Kym responded right away. Her daughter, Maddy was five. We met a few weeks later at Duke Hospital, where they were going in for follow-up for Maddy’s stem cell transplant, and we were going in to start to plan Caterina’s own stem cell transplant. She gave us hope that there might be a future at a time when we were filled with fear facing the unknown.

Our daughters have survived insurmountable odds to get to where they are, including bone marrow transplants, corneal transplants, spinal surgeries, a kidney transplant, and bouts in the ICU where their frailty tested our hearts and minds. They’ve come back from all of these challenges with a strength that inspires us, and a beauty that can only come from a strength of spirit.

It’s been twenty years since that fateful first meeting. We have traveled similar paths, and have kept in constant touch during the best and the worst of times. On May 4th , Maddy graduated college, one of a handful of kids with this disease to graduate college. What a privilege to witness Kym and Maddy’s journey, and to know these beautiful women. They give me hope and fill me with strength.

 

What does 'beauty' mean to you? 

My idea of beauty has evolved as I have aged. I had a traditional view when I was young and focused on physical beauty. Now, I believe being beautiful is more about what you project to the world. The adage that beauty comes from within is true!

 

Do you think there is a relationship between beauty and wellness?

Yes, the most beautiful people I know are those who project strength, positivity, kindness and joy.

 

How has raising a special needs daughter changed your understanding of beauty? 

I now fully embrace that beauty comes from a strong spirit. Not that it's easy, raising a daughter in the glare of social media and society's traditional view of beauty is difficult. Add any sort of physical or social differences to the mix and you have to guard their heart (and yours).

 

What would you tell the 20-year old version of yourself about your relationship to beauty and/or to wellness?

I would tell her to stop fretting about the size of her thighs, and stop attempting to make herself smaller -- in all the ways.

 

How do you find time for wellness?

I make exercise a priority. Moving my body is essential to managing my anxiety and mood. I have found a wonderful community at my gym, great for my body and spirit. I do some form of exercise everyday, even if it is only a walk with our dog. I also try to fit in walks with friends, it's like therapy with steps, Clau and I do it often. I also love to garden, I find it meditative. I am completely calm while working with my plants. The occasional facial or massage also helps!

 

What image best captures the essence of beauty for you?

Maddy, with a friend, in a library or her favorite bookstore.

 

What is the essential quality of your being that has gotten you through challenging times?

There are two, tenacity and resilience. After Maddy's diagnosis I quickly learned that I had to become her advocate. First, for the best medical treatment and early intervention therapies, and later for her education. Ensuring Maddy received the services in school that she was entitled, was at times, a battle. I armed myself with information and with a smile (usually) and cajoled, prodded and nudged school administrators into meeting Maddy's needs. And I did it on repeat. Maddy recently received her BA in English Literature.

Back to blog

Leave a comment

1 of 2