Wednesday, February 9, 2011

Share your story

By now, you know Keegan's.  If not, you can click the "about" tab above. 

So today, I want to offer all of you the opportunity to share your story.  Are you a heart patient/mom/dad/sibling/grandparent/anut/uncle/etc?  Are you the parent of a sweet CHD angel?  Even a friend who has watched and supported another through the difficult battle? 

Please share your story with us in the comment section below.  I can tell that many web friends out there are reading this blog anonymously, and this is your chance to speak out.  Maybe your story will touch or change the life of another. 

I know Keegan's has.  And I know my life has been changed for the better just by knowing I'm not alone. 

So, thank you in advance for speaking up.  If no one does, it's okay.  I know you're out there, and I'm praying for you anyway!


Sheradon said...

I am a proud CHD patient! As One of Keegans "home health nurses" this is one thing we share. My defect was much simplier than his, an atrial septal defect. I was repaired 23 years ago NEXT week!

Beth said...

The only CHD story I have is Keegan's... and I suppose I don't even really "have" that? But, I share it anyway, with everyone who will listen.
I just wanted to let you know how much his story has touched my life and the lives of my daughters. In November, when Keegan was at Children's, I started reading your blog daily... to myself, and then to my girls who are 7 and 9. (they are the same ages as Bryan and I were when we lost our dad) So while I understand they are still too young to fully grasp the situation, it was a chance for us to look at and celebrate the blessings God has given to all of us. I needed that, Maddie... we all did!! The night I finally sat down and was blessed with his life story was so healing for me. Not in a physical way, but spiritually. It made me realize how good God is and how much of my life I was wasting. How much time with my babies I was taking for granted. I cried and laughed and celebrated his successes. My girls and I prayed for his recovery. And we, as a family, walked that road with you guys. Silently, but not a day went (or goes) by that the four of you are not in our thoughts and prayers. You are an amazingly strong woman, and I admire your ability to simply put one foot in front of the other and trust God has a plan for Keegan's life. So thank you!! He has touched more lives than you could ever imagine!!

scrippe1 said...

I remember the day well, early that morning I drove to the hospital to see Keegan and his parents - after very strong convincing from Mom's and Dad's, Maddie and Grey had gone to get a shower and much needed rest. There was one nurse in the room, she said "are you a relative"? I said "yes, I'm Keegan's Great Aunt". She said he was resting well. There were so many things coming off of him - he was still on the ECMO machine, (it happened to be his last day on it - but no one knew) he was so peaceful. A wonderful young lady came in - I can't remember her name now, but she was the transplant coordinator - she said are you a relative, I said yes. I remember saying that I thought today would be a really good day for Keegan and she agreed. I went on in to the office, not knowing the chain events that would occur after I left the hospital. I remember my brother "Big Daddy" telling us that he had to stay by the phone "just in case". And, then just a handful of hours later - the biggest, heartfelt scream - WE HAVE A HEART! The happiest feeling ever and the saddest knowing the hardest decision ever to be made by a family. God blesses all that choose to open their hearts to him. Keegan is truly a gift from God. I believe there are wonderful things in store for him in his life. And, he has been blessed with the smartest, most gracious parents that I know who will continue to encourage him, nurture him and help him turn into a wonderful adult.

Love to all,
Aunt Stephanie

Elisa Foster said...

Hi Maddie,

Thank you so much for keeping everyone informed about CHD, your advocacy is inspiring. My cousin, who is exactly our age, also has a child with multiple CHD. Although her son Carter did not have a heart transplant, he underwent multiple surgeries as an infant and now has a hole in his heart to allow his blood to flow properly. He has also fought off diseases caused by a weakened immune system so your worries about keeping Keegan safe and healthy really hit home. But Carter, like Keegan, is a fighter and a true miracle in our family. While I cannot possibly imagine what you go through everyday, I think of you and my cousin often - your courage is inspiring and humbling. Please know that Keegan is in my thoughts and prayers.
All my best,
Elisa Foster

motherto3girls said...

I have not been to you blog for a while and was just checking it. I thought I would respond to this post. My daughter was diagnosed at 3 months old and had her heart transplant at 18 months. I keep her carepage updated as needed. You can check it out here....