My Wonderful Wally,

When you were born we had no idea that the birth of you would set us on a journey that we never could have anticipated. A journey that has not always been easy. A journey that has been difficult and challenging, and at times impossible to navigate. A journey that has changed our lives. Upside down. Inside out. A journey that has changed who your daddy and I are. Not just as parents. But people as well.

When you were just seven weeks old you contracted RSV. Little did I know than that this virus would save your life. You see, RSV led us to the diagnosis of dilated cardiomyopathy, what your brother Henry died from. It would follow with an even bigger diagnosis, and more answers we had been desperately searching; Barth Syndrome. At the time, it felt like my world was ending and my hope was dwindling. And I was sure I was going to lose you. I was mad. Angry. Screaming to who ever would listen. Why you? Why us? Why? Why? Why? The answers sweet baby boy never came. But I believe now, looking back, that it was all to prepare us for what was to come.

We always knew with dilated cardiomyopathy that there was a chance you would have to receive a heart transplant. But we blocked that aspect of Barth Syndrome out. We refused to believe that would have to happen to you. We were indeed naïve and in denial. And because of that, the last thing we expected was for it to happen just one year after your Barth Diagnosis. A little over 60 days after your first birthday. But that’s exactly what happened.

A year ago, today, when you were just fourteen months old, your life was saved by a little boy named Carter. Who unfortunately you’ll never get to meet. You were given a second chance at life. A gift, the most perfect heart, from complete strangers who knew nothing about you or us. A gift you or I can never repay. The day we received the call is a day I will never forget. After being in Chicago for over a month, you being extremely sick, us almost losing you more times than I can count, two open heart surgeries, A BIVAD, and a berlin heart, we received the call at 7:30 am on February 28th that there was a heart available and it was perfect. I remember facetiming your Nonnie and I could barely get the words out from crying so much. Your Nonnie was panicking because to her it seemed like something bad had happened 😊. But it was a bittersweet moment. Because I knew what this moment meant. It meant so many lives would be changing in such a short time.

Our lives.

Your life.

His life.

Their lives.

His heart would become your heart.

Their hurt would become our hope.

And I cried. And I cried. The relief, the pain, the fear. The excruciating pain on behalf of another mother saying goodbye before she ever dreamed, she’d have to. We were rejoicing, and they were grieving. It is almost impossible to try and wrap your head around.

What made it better was you were so happy that morning. It’s like you knew. I think you could sense our happiness. You were smiling and laughing. Your crazy hair was sticking up all over the place. And when we handed you over (after many hugs and kisses) … as they wheeled our sweet, very smiley Wonderful Wally down the hallway, and we were told it was time to let go, I said goodbye. You see I hate saying goodbyes and I had never said goodbye to you before any surgery until this one. It was always “See you later”. But this was different. Goodbye in this moment seemed fitting. The reality was … I knew this would forever change you. That you would no longer have the infected heart you were born with. Not only that, you were essentially going to die on that operating table. They were going to take out the Berlin and stop your heart. It would than be removed from your chest, and a machine would take over. Until that is, your new heart arrived. By helicopter I might add. These amazing, trained, gentle skilled surgeons would than place your new heart where your old heart resided. “Welcome to your new home little heart.” That’s exactly what was said as Dr Backer placed your new heart into your chest cavity. The skill, compassion, and steady hands of these surgeons and medical team were making you whole again. Your new heart would once again beat inside a human body. Only this time… It would reside in a boy named Wally, who I just know is going to change the world someday. So yeah Walter Joseph. I said goodbye. I watched them wheel you into the elevator, praying and anticipating our next hello.

And when you did return, after twelve hours of not seeing you, you were completely whole again. But the only difference that seemed adamant was, you weren’t 100% yourself. You were still ours most definitely, but now also theirs. Two lives wrapped up in one single body. Your life doubly meaningful. You are living a legacy my dear son. A tribute to sacrifice and selflessness. And just thinking about the gift you’ve received knocks me to my knees every time. We will celebrate this gift and Carter each year because we are so very blessed to still have you with us. Yes, the future is unknown. But because another family made a difficult decision in a time of distress, you will have a future. There will be more chapters in the book of Wally.

And for that…. I am forever grateful.

Happy Heart Anniversary my sweet boy! I pray that you always remain humble and kind. I hope you always know how loved you are and how very special you are. Your dad and I will always make sure you know not to take a single second for granted and to remain grateful for this beautiful life you have been given. You are brave. Strong. Determined. Our wally. Our miracle boy. We love you to the moon and back and back again.

To our donor, Carter, and his family. We will never forget the decision you made or the selflessness you showed in your time of grief. I promise you this, Carter will forever live on in our sweet Wally. We as a family will never take a single moment for granted. Because we know all to well how short life is. Every day and every night has and will continue with a prayer for Carter and for all of you. We love you and cannot wait for the day we can hug you and show you what a gift of life truly means.  

#wonderfulwally

#organdonationsaveslives

#thegiftoflife

#newheart

#oneyeardown

#fearfullyandwonderfullymade

#allbecauseofaboynamedcarter

#ourhero

#barthsyndrome


#team barth

5 thoughts on “A letter to my son on his first heart anniversary

  1. So many tears flood down my face! We are so grateful for you, Wally! We are grateful for your parents, the donor family and sweet Carter. Kelsey, thankful for continuing to share your journey and all that comes with it! You are a genuine testimony of God’s goodness, love and mercy! Hugs to all and many more years of that precious, beating heart ❤️

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  2. So many tears being shed right now reading this. Thank you for sharing your journey with us, Kelsey. We love and honor Carter and his family today and every day for giving this gift to sweet Wally.
    We continue to fight for treatments and a cure for Barth syndrome and we will never stop!

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  3. Wow! What a beautiful tribute! I am completely amazed at your ability to put into words all of these feelings and emotions. Wally is truly an amazing little boy and you are amazing parents. May God continue to give Wally a wonderful life and give you the strength to continue on a fun journey with him and never forget his generous donor family. I am sure Carter is watching from Heaven and enjoying Wally and his happy life. Continue what you are doing and God will hold you close. Love you, Wally.

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