Thursday, January 28, 2010

There Really Are Just No Words

I had to get up super super early this morning to take Lilly to her Cardiology appointment. We both had ECHOs today to make sure we don't have any form of CHD. I am very pleased to say that we were both cleared. Healthy hearts for us!

But that's not what I wanted to share...

Afterwards, I was so tired. So me and the kids decided to turn on the TV and lounge on the couch for a little nap together. Noah and I slept while Lilly, and her never ending supply of energy, did her tinker stuff all over the livingroom.

When I woke up, Noah was cuddled next to me under the blanket. He loves to lay under blankets with me. If I ever sit on the couch he will go grab a blanket and come sit next to me. He then woke up and went on got a small ziplock baggie of Kix.

He laid there all snuggly, opening his little baggie, and snacking on Kix while we watch Curious George and giving me kisses over and over and watching him about made my heart explode.

He's 2 1/2 and more monster and monkey than little boy but he is the sweetest thing in the entire world.

To remember seeing him a sick teeny little baby and then try to match that up with the big boy I see now almost doesn't make sense in my mind. I am filled with this overwhelming Mommy Pride when people ask me how he is doing, after everything he has been through, and I can tell them he is doing fabulously.

But you know, I still get very emotional when I think or talk about the experiences we had when Noah was born. That wound is still tender and I am still very sensitive about it. It hurts me to think about this precious boy ever being sick and in pain. I try not to think about it too much. Life moves on and we have been given this huge gift of life and time together and I refuse to squander it in the what-ifs and has-beens.

Each new day that we have makes my thoughts about Noah's donor family even more tender. From the moment I received the call that Noah was getting a new heart, I have grieved for them. I think about their loss every day. I think I grieve for them more now than I did in the beginning. Back then, my joy was so profound over the life given to my son. Now that I have had time with him, gotten to know him, and experience the joy he has brought into my life, I realize even more profoundly exactly what they have lost. I continue to be amazed at the courage it must have taken to make the decision to donate right in the midst of their sorrow.

Really, there are just no words. No words to adequately describe my gratitude. No words to adequately describe my sorrow. It's been an experience like nothing I could have imagined. And yet, I wouldn't trade what I have been given for anything.



  1. I still remember the day you got the call from the doctor telling you Noah got his heart. You didn't even have to get off the phone and tell me, I just knew he did. I'm also very greatful for his donor family. If it wasn't for them I wouldn't have my special little guy.

  2. As they get older and accomplish so much it gets better. I know exactly how you feel. I look at Kayden and I am just amazed at how far he has come and I too am proud. Don't ever feel bad for being proud of your son. I remember a day that we went hiking and Kayden was climbing all over the rocks and I started crying because I was seeing my little boy accomplish something that I never thought I would. I tried to stop him so that he wouldn't get hurt but then I also realized then that sometimes I am the person holding him behind and not himself. I made a promise then that I would let him try anything he wanted even if I was nervous because HE needed to do it to have the accomplishment himself over my selfishness. Don't think that I am calling anyone selfish it was just something that I realized that day. Believe me when I say that I know EXACTLY how you feel right now.

  3. God is so good. His grace is so amazing. Thanks for sharing..


  4. Hi!
    I came across your blog today. Noah is a beautiful little boy. I have a 2 year old daughter, Cassidy, who was born with Tetralogy of Fallot w/ PA & MAPCA’s.
    I think blogs are a great way to get the word about about CHD’s and I commend you for what you’re doing.
    My wife and I are also on a mission to spread the word about CHD’s. We just started a jewelry company called Lucky 10. All of our products are handmade and pertain to Heart Defects and the Heart Community in general.
    Please check out our site when you get a moment. If you could help us get the word out about our new business we would be very grateful. It’s a project that’s very dear to our hearts.
    Thanks so much and we look forward to reading more on your blog!
    Vito Lisa

    P.S. If you want to keep up with Cassidy’s journey here is her Carepage info: , Page name: cassidylisa


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