April 29, 2011
10:00am - 2:00pm
The Radisson Hotel Sacramento
500 Leisure Lane
Sacramento, CA 95815
Jillian Sommers was born with several heart defects that were detected shortly after she was born. At the age of 6 years old, she has already had 3 open heart surgeries. Below is Jillian's Story, in the words of her mother, Dina.
Being given the opportunity to talk about Congenital Heart Disease seems so ironic to me. I became familiar with the American Heart Association in 2004 when I was 8 months pregnant with my third daughter. I had no idea that inside of me was a little girl with a very broken heart.
When I was asked to speak about Jillian and how congenital heart disease has affected our life, I was excited. Excited to be able to educate and enlighten others about this disease that affects so many babies. Over the past 6 years since Jillian has been born, I have worked hard to try to live every day to the fullest, appreciate my circumstances and the gift that I have been given. In doing so, my anxiety about the real possibility of losing my daughter to CHD has lessened, the tears are not as quick, the heartache is not as sharp. But then I sat down and tried to organize my thoughts, and I couldn't think of what to say. And the tears came.
My struggle in telling our story has been: What do I say? How do I fit all of the emotions, feelings, thoughts, experiences, and situations into words? How do I convey the raw emotion that comes with being told your daughter's heart cannot ever be fixed? Being told her future is uncertain? How do you make strangers understand what it is like to live with the knowledge that your daughter has had to endure open heart surgery not once, but 3 times, could need more, and may need a heart transplant in the future? How do I translate the feelings of appreciation and gratitude I feel every morning when I wake up to another glorious day with Jillian? The grief I feel when another heart family we know has lost their precious child? How do I explain the heartache that exists every day, and if I should lose her to this disease, the complete and total devastation I will feel?
Everyone has their story. This is my story, my reality. And at times, it is awful and has scarred my soul in more ways than I can begin to explain. But I want people to know there is hope. Hope that at one time I did not have. I once had a doctor tell me that if Jillian lived, her quality of life would be horrible. He took my hope away from me. And I could have given up right then. But I didn't. Jillian's surgeon has given me a gift. Since he could not fix her heart, he has given me the next best thing...time. Time with Jillian that 15-20 years ago I would not have had. And although that time is uncertain, it is time that I have because of a medical community whose passion is to research and develop new techniques that allow children with CHD an opportunity at life. And with support from the American Heart Association, they can continue to look for solutions, pioneer new surgeries, educate...give other families like ours hope.
My hope is that I have given you a glimpse into a club membership that no one asks to join. But I also want you to know the sheer joy that is Jillian. The happiness she brings our family, the sweet kisses she gives freely, the way she lights up a room, the way she makes people's hearts melt with her sweet disposition, and the mark she has made on my life unlike any other person. And, dare I say, the awesome quality of life that she has. All of this has made the whole journey...past, present, and future...totally worth the ride.
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