A Woman of Valor–Carrie Bergeron-Desai

This weekend I had a choice. I could spend May 1, 2010 in Las Vegas, Nevada with my colleagues and friends at our spring meetings to discuss advances, issues, and controversies in otolaryngology. Or I could spend my weekend in Lancaster, New York (a non-descript suburb of Buffalo, a not very exciting city) talking to the parents and guests of the Western New York Down Syndrome Parents Group.

Whether out of lack of energy to travel yet another weekend this season or from my unwillingness to renege on a promise to participate in this event long before I realized there was a conflict, I can now say with certainty that I learned much more about medicine and my patients staying in Buffalo than I ever would have at the meeting. Don’t get me wrong. These medical meetings are essential to advancing knowledge and keeping abreast of medical progress. And what I imparted in knowledge to the 100 parents who face raising a child with a lifelong developmental disability paled in comparison to the insights I gained from listening to a very special group of brave people. Parents who wanted to know how they could bring a better life to their children.

We began by listening to the key note speaker, Carrie Bergeron-Desai. Carrie is an accomplished, charming and beautiful 33 year old woman with Down Syndrome. She is also a daughter, a sister, an aunt, a godmother, a graduate of Herkimer County community College and (sadly) the former wife to another person with Down Syndrome. She works, she is fluent is sign language, performs music with sign, and gives back to her community.

Carrie had a choice. The choice of how to live her life. She told us about her journey from dependence to independence. This is a journey all of us must make, but think how much more difficult and frightening it would be for someone who we look at as different, less able, and as disabled. But Carrie was blessed with an incredible family, a wide, diverse group of friends, and caring therapists. They all believed in her so she could and did embark on this journey of self-determination.

After being accepted into the program, they required that she set goals and identify her valued outcomes. Her four valued outcomes, which she works on every day, are to live independently, be employed, maintain good health and fitness and give back through community involvement. Are her valued outcomes any different than mine or yours? I think not.

After this life changing one hour introduction to this woman of valor, I moved through the day of workshops. I heard how parents need to find and maintain services. How they secure educational and recreational programs. I listened to the fears and challenges they face when they had to “let go”—first in pre-school and later as some would try to live in group homes or, as Carrie has, more independently.

Before lunch, I spoke about the identification and effects of obstructive sleep apnea, a problem that is almost ubiquitous in children and adults with Down Syndrome. The room remained full well beyond the allotted hour. Their questions were interspersed with their stories. Through this discussion I gained a growing understanding of the enormous challenges and frustrations faced by these parents. Just completing tests or complying with therapies creates an additional burden to the already incredibly difficult times these families have when interacting with the healthcare system. And what made me most sad, and angry, was how many had been told not to worry, for after all, their child had Down Syndrome, and so what could they (or should they) dare to expect.

I am sure that my day was more than worth the missed trip to Las Vegas.

So by the end of the day, I really did believe what Carrie so charmingly told us during her talk, “We are more alike than different.” If you think this is just another catchy feel good phrase, I assure you it’s not.