The leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society
8 E 41st Street, 8th Floor
New York New York 10017
[email protected] 

Two Hearts
Dylan and his loving big sister Cass
Dylan and his loving big sister Cass
Two Hearts

At 8:30 in the morning, on November 4th, 2008, we handed our 4 month old baby, Dylan, over to his cardiovascular surgical team. Dylan was about to undergo open heart surgery. What was meant to be a complete AV canal repair, wound up being quite a bit more complicated than everyone had anticipated. And thus it began. The journey of how two broken hearts were repaired. Two and a half hours into Dylan's open heart surgery, we were told that an additional defect called an AP Window was discovered. We were told that this was unexpected and would create both a longer surgery as well as a more challenging recovery. We later found out that they had never before seen an AP window with an AV canal defect before. That night, they let us see him. They finally let us see him and it was amazing. He was amazing. Nestled in with wires and tubes and machines, was Dylan. He did it. There he was. My baby did it. Later, as we sat in our hotel room across the street from the hospital, I wrote: My head hurts, but my heart is so full of love. Dylan has absolutely, positively, 100% blown me away. He is so courageous and so strong. As I was leaving the Intensive Care Unit, the Physician's Assistant said, "Don't worry about Dylan. He's leading the way and I'm pretty sure he knows exactly what he's doing". That was it. That was when my thinking began to change; when my feelings began to change. That was when my fears about Down syndrome began to fade, and my love for Dylan began to evolve into something far stronger than what I had thought possible. My son was fighting for his life. His life that is worth living. And I was realizing that there was nothing more that I could possibly hope for than to be a part of it. Nothing else mattered. Dylan began to recover. His heart began to heal. And all the while, my heart was recovering and healing as well. As it turns out, mine was also in need of repair. See, after hearing my newborn baby's diagnosis of Down syndrome, my heart broke. Not completely in two, but indeed it was hurt. And just as Dylan's heart wasn't working properly, wasn't working to its fullest potential, neither was mine. It needed perspective. I needed perspective. His heart and mine. Healing together. It has been two years since the surgery and while Dylan's heart is not perfect, it is stronger than it has ever been. And my once damaged heart? It is just as Dylan's is. Not perfect but repaired. Strong. And full of love. I have been given the gift of perspective and Dylan the gift of life. And because of this, we have both found love.

Vote for your favorite story! Each month, the two stories with the most votes will be featured in the NDSS E-Newsletter.*


Your email address will be used for voter tracking only, and will not be used for future NDSS emails.
Click here to become a fan on Facebook.
Click here to follow us on Twitter.

*Votes will be reset at the end of each month.

Full Name
Comments (1,000 character limit)

Mary Woelfel, United States, MA
12/1/2011 2:56:15 PM
Laurie you are such an inspiration for all mothers and have been an incredible advocate for Dylan!! Your posts have been so well written and touch the heart...Your kids are so lucky to have you!!

steve irving, United States, WY
12/1/2011 2:59:20 AM
They are both fighters. Dylan,Cassidy,and Laurie will move forward

Wanda Wyman, United States, ME
12/1/2011 1:31:41 AM
Dylan is a blessing he will be a shining light to his family on their darkest days. I beleive God gives us people and situations in life to make us stronger and to appriciate his love for us. Dylan has shown his mom how strong she is and how much love she

Kimberly Duplessis, United States, ME
4/8/2011 5:39:15 PM
What an inspiring story. Dylan has touched so many hearts and is truly a blessing. He is smart, kind, funny and very handsome. Dylan has been through more than most adults go through and he has come out stronger, and always with a smile on his face. Dy

  • Buddy Walk
  • NDSS Yourway
  • NDSS DS-Ambassadors