You may remember me blogging back in October when i participated in the Heart Walk festivities at Tom Brown Park. This Friday I get to participate again at AHA‘s Annual Heart Ball. The proceeds from this shindig benefit the American Heart Association and the research and programs they offer.
Mostly I want to share a letter from my sister that she sent out to all of her friends, family and coworkers telling the story of the last 7 years with her amazing daughter and the struggles they have been through and the hurdles they have leapt. If you can come out to the Heart Ball, come! If not, consider sending a donation to…
American Heart Association
Greater Southeast Affiliate
ATTN: KIM ROOKS
2851 Remington Green Circle Suite C
Tallahassee, FL 32308
Subject: My daughter, Taylor Madison
Good evening! Some of you may have heard me talk about my daughter so I wanted to give you all an update, but here is a little bit of her history and what's to come.
Seven years ago last Wednesday, a miracle came into our lives, Taylor Madison. Life changed completely, and for the better. If someone had told me back then that Taylor would need nine heart surgeries by the time she was 3, I would have fallen apart and said there was no way I would be able to handle anything like that. After she was born, I wondered how I would manage to go on with life if I lost her. But God was watching over her.
We knew Taylor would need at least one, major open-heart surgery to repair her many, complicated problems. We never dreamed she would have to have nine surgeries by the age of 3. She was born with congenitally corrected transposition of the great arteries, which includes not only transposed arteries but ventricular inversion, too. She also had a ventricular septal defect and complete heart block. Outside the womb, Taylor's heart was 60.
Born at Shands Childrens Hospital, Taylor needed an operation that few pediatric heart centers were capable of doing. One Florida hospital offered a palliative procedure that would keep her going until she could have a transplant. Childrens Hospital Boston said it could perform a relatively new, but promising procedure called the double-arterial switch, which would not just be a hold-over until transplant, but a correction that would allow Taylor to live a normal life. We chose Boston and Taylor was the 29th patient to undergo the double-switch procedure at Boston.
Taylor's procedures did not always go well. At times, it seemed as though Taylor couldn't get a break, she would go into the operating room to correct one problem and come out with another one. She suffered from life-threatening infections and pleural effusion. Complications from her surgeries left her with no function in her left ventricle. We often wondered if she would even survive, and if she did, how would all those surgeries affect her physical and mental development. But Taylor is a fighter. She survived every surgery and every hurdle in front of her. She has thrived, physically and developmentally. She is an extremely bright, exhaustingly active, incredibly independent and captivating little girl.
Watching her on her 7th birthday was a miracle, and I feel blessed that God has given Robin and me this precious gift. All birthdays are special, but the birthdays of heart children are especially remarkable and wonderful.
Now, after several years with no invasive procedures, we must prepare for Taylor to undergo surgery to replace a pacemaker lead to her heart and to replace the pacemaker itself. Pacemakers work off generators, batteries, and Taylor's pacer batteries are due to run out in the next six months. It's been such a blessed and peaceful few years. It's very hard, knowing she will go into the operating room again. Her surgery is scheduled for March 30th at Wolfson's Childrens Hospital in Jacksonville at 12:30. Maggie Bartlett has offered to let us stay at her house while we are in Jacksonville. She ROCKS: THANK YOU MAGGIE!!!! Children are so sweet and unknowing, it's difficult to watch any child undergo such grueling procedures. While I know in my head that pacemaker procedures should be routine, I simply cannot forget how hard Taylor's previous pacemaker surgeries have been, and I worry and I'm afraid. But I also believe and have faith that she will come through this well. She will bounce back like never before. This will be Taylor's 6th pacemaker and her 10th surgery.
I know that God has a plan for Taylor, and all his heart children. We may not understand what his plan is, but our special children are here with us for a reason. Taylor is an inspiration to me because of everything she has been through, because she has fought so hard to be here with us. She is an incredible child and even though I think she acts like her father, everyone else tells me she acts just like me. And if that really is the case, all I can tell you is: Look out, world!
To all of my co-workers: I want this to be an inspiring message for you. I know fundraising is not easy with the economy but the money your events raise helps save children's lives too! Research saved Taylor's life and from having a heart transplant at 3 years old. Please continue doing a great job and if you get frustrated just think of the children and adult lives that AHA has saved.
Have a great day!!!
Assistant Director/Executive Assistant
American Heart Association