Ask the Advocate: Time for Reflection

Published on in Trisomy 21 Update

You are your loved one’s best advocate.

One of the things we learn intimately as parents of children with Down syndrome, is that sometimes our “plan” is not the same as our “journey.” We also learn quickly that achieving balance in our life — especially among all its demands — greatly mimics a juggling act.

After lots of prayerful consideration, I have decided to step down from my role as program manager in the Trisomy 21 Program.

I am so thankful for the knowledge and experience I have gained working with what I consider to be one of the best healthcare teams I have ever encountered. Those who know me well, know this type of praise doesn't come lightly.

As the parent of two patients cared for by this team, I know firsthand the benefits and positive effects in my children as a direct result of the care provided by the Trisomy 21 Program team. I am honored I had the chance to work with them and expand my experiences, both personally and professionally.

I am equally grateful for the opportunity to meet all the wonderful families who are part of the CHOP Trisomy 21 Program. You have enlightened me and blessed me in more ways than you know. It is through listening to your stories, your courage, your passion — and yes, sometimes your dismay — that I was able to draw strength for my own journey.

Knowing you and your children reconfirms that this world is a better place with our loved ones in it.  It can be an uphill battle at times, but it is always worth the effort. 

Although my position with the Trisomy 21 Program will be changing, my work will not. Because of how much I love and value my children, John and Sara, I will always advocate alongside them. They are strong, valuable, compassionate, smart, and loving individuals who — with the right support — are developing fulfilling and meaningful lives.

I encourage you to continue to use your voice so others will appreciate all the beauty that we see in our children, and to help us create services and supports to address the challenges that stand in the way of our loved ones achieving their full potential.

Until we meet again …