Tuesday, March 12, 2013

Meeting Heart Dada

I am so sad that it has taken me this long to post. I think facebook has taken away some of the need to post, but I love having this to look back on. On December 31, 2012, we were able to do one of the most special things anyone could do. We met the name that saved my son's life, the man who gave us the give of the last 3 years and many more to come. We met Troy, Landen's donor dad. In December, I told Landen that we were going to met Claire's dad. He thought about it for a moment and said, "Heart Dada." I was surprised he put it together. He knows that Claire gave him his heart. If you ask him what Claire gave him, he will usually lift up his shirt, point to his scare, and say "heart." He has a poster of Claire and her older brother Carson on his wall in his room, just above his bed. Landen wanted to see a picture of "Heart Dada," so I showed him his facebook profile. Throughout the rest of the month, Landen only 2 1/2 at the time never stopped talking about "Heart Dada." On Christmas Eve, since Landen had never met Santa Clause and the idea of him sitting on a Mall Santa Clause's lap about gives me a panic attack, my friend let me borrow her husband's costume and Joe dressed up after work. When "Santa" knocked on the door. I told Landen someone special was at the door. He got a huge smile on his face and said "Heart Dada." I told him it wasn't Heart Dada, but it was someone else special. He started to cry. All he wanted was to see his Heart Dada. He still wasn't excited about Santa Clause, but at least I got a few pictures. Next year I think we are going to have to get another Santa because the kids were not fooled. It might be because Santa usually doesn't have braces. As the date to meet Troy came closer, I was so afraid that I would just be an emotional mess. For those of you who know me I am very sensitive and cry very easily. I thought all I would do was cry. As the day finally came, the emotions turned to excitement. I was so excited to be able to meet Troy and tell him thank you. I was most excited about having Landen meet him. I was not sure what Landen would do. He is really not around other people much. We do not live near family and most of the people Landen sees are doctors, nurses, therapist, and phlebotomists. So, I wasn't sure how Landen would react. On the morning of December 31st, we all got ready for the big day. Joe took Landen to get some pancakes because he is obsessed with pancakes. The other kids and I got things ready for Troy to come. We planned on meeting at 9am in the back lobby of our hotel. As I saw Troy come to the door of the lobby, I was a little emotional, but more excited. I was so excited to have him meet Landen. It was so great to see him. I cannot imagine how he felt. Was it as exciting for him? Or was it hard? I am not sure. I just cannot imagine what emotions he would have felt. Landen came downstairs and ran right past me and right into Troy's arms. On a side note, Landen has never ran before. We have been working on his is therapy for months. He was not afraid at all. I really feel like he knows him. I know that might sound crazy, but I have never seen him so excited and calm. He usually doesn't ever leave my side. Landen brought both Heart Dada and Heart Mama presents. He gave Heart Dada a statue of a Lion and a small lamb lying together. It is the same statue we have above our fireplace. He gave Heart Dada a present to give to Heart Mama when the time is right. He gave her 1/2 of a heart necklace that said "And the Lion fell in Love with the Lamb." My half says "And the Lion" with a lamb charm and her half says "With the Lamb" with a lion charm. Troy had asked if he could bring a stethoscope to listen to Landen. His physician friend who was with him in the hospital when he had to make the decision to donate had given it to him. When he told me he wanted to listen I was so excited. We were planning on bringing our stethoscope, but I wasn't sure who to bring it up. I am so excited that he wanted to do this. He let Landen listen to his heart and then he was able to listen to Landen's heart. But, it wasn't Landen's heart he was listening to, it was his baby girl's heart. His baby girl, Claire, beats inside Landen. This baby girl keeps my baby boy alive each day. As he was listening to this beautiful heart beat, a smile came over his face. It was a priceless moment that I will never forget. I try to imagine how this felt to him, but I just cannot imagine it. Even months later it brings tears to my eyes. After that Troy, Joe and I sat down and were able to talk about the accident, his decision, and "the lamb." We have discussed many these topics by letters and emails, but face-to-face we were able to put things together that we hadn't put together before. I remember the day we found out they found a match for Landen. I remember and to this day still feel the emotions associated with the news. We were so excited for our son. He would have a chance at life. We were no longer going to see him get worse. Days before they found a match, Landen's heart continued to get sick. The monitors consistently went off. He was missing heart beats. He was having "ventricular" heart beats. Later I found out that those are what would have killed him. His ecko was so bad the doctors did not even give us the results until one of the interns gave us the results by accident. The nurses later told us that no one wanted to be over Landen. We couldn't understand why because he was actually a really good baby. They told us they thought he would die on their shift. At the same time we were dealing with this, Troy was dealing with much worse. He had made the decision to donate Carson's organs the night before and now he had to make the decision for his baby girl. His wife was in a coma at the time, so it was all up to him. He not only had to make this decision, but he had to think about what his wife would want. Troy had stated beautifully in his first letter to us about his decision with his son Carson: "regardless of all the hospital's modern medical technology or (his) own willingness to do anything, go anywhere or spend everything (he) had, he would die. The only question was what his legacy would be. Would people remember him as the tragic and sad victim of someone else's terrible choices or would they remember his as a happy little boy who brought a smile to everyone's face, as the superhero and Jedi Knight that he thought of himself as. It was not a easy decision but I came to realize that this was his chance, in death, to be the hero that , in life, he knew himself to be." As we sat there and spoke we were able to here more details about what it was like for him waiting for the match. It took them a long time to place Claire's organs, namely the heart. Troy was not sure why it took so long and why do many tests were ordered. The reason it had taken so long was it had to get all the way to us. Because Claire's heart had been resuscitated it was considered "high risk." Many transplant centers prefer to not do high risk transplants, our hospital included. But, to us, it had to be "high risk" or it would not have made it to Landen. I remember hearing that 17 people higher on the list than us (in different regions) had said no. The reason for this is this was Landen's PERFECT heart. Although it was high risk and incompatible, this was Landen's PERFECT heart. When asked about the stuffed lamb that Troy sent with the heart, he said it was just sitting in her bed as they were taking her to surgery and the idea to send it just popped into his head. He talked to the donation coordinator and they said they haven't heard of anyone sending anything and didn't know if that would be okay. On a side note, at this time, they called our hospital to ask us if it was okay for them to send a gift and would we accept it. Troy said that he thought they were just telling him that they would take it, but he didn't have much hope of it actually making it to us. This beautiful and thoughtful gift meant so much to us. It arrive at the same time at the heart. It was about 3am and Landen had been in surgery for 3 hours already and had at least 3 more hours of surgery. When we saw the gift tears came down our faces. How could he think about us in the middle of everything he was going through? We knew that our donor's family was an amazing family. We ran upstairs and got Landen's matching Lion that had been in his bed since the day he was born. We put the stuffed lamb inside the arms of the Landen's stuffed lion and waited for the news that the new heart, Claire's heart, was beating inside our son. I can still remember the emotion that happened that night. This little stuffed lamb made the idea of someone else's sacrifice so real. We knew that as we were hoping for a new life for our son, someone else would be saying good-bye to theirs. This was a horrible feeling, but we prayed each day for our son, but also for the family that would be giving our son this gift. After our talk, it was time to say good-bye to him. Landen gave him another hug and so did Joe and I. It was a great experience meeting Troy. I was so surprised that I did not cry through the meeting. I think the excitement helped. But after Troy walked through the door and got in his car, the emotions started to come. That day and the nights followed were very emotional. I just cannot imagine the pain of his loss. I hoped that he knew and continues to know how much his family means to us. I worried that it did not turn out how he had expected. But, I hoped that he enjoyed the meeting as much as we did. The last few months Landen continues to talk about Heart Dada. WE have a puzzle of the United States that he loved to do. He calls it "Heart Dada Puzzle" because soon as he finishes it he wants to know where Heart Dada lives. I point to Iowa and he says "Oh, Iowa." We do this puzzle almost every day. He also carried around a picture of him and Heart Dada and shows everyone he knows. I am so excited that we were given this opportunity to meet someone so special. We look forward to meeting again someday.


  1. What a neat and special moment. I love how you are recording all of this!

  2. You don't know me but I have never cried so hard at something so beautiful.