The road is often challenging when navigating life with a heart condition. Campers Miranda, Ashlyn, and Eddie were all awaiting heart transplants when their moms Melanie, Angie, and Chris discovered powerful sources of support, for both themselves and their children, in one another. Below, they each provide a bit of insight into their shared journey…
Miranda’s Mom Melanie
We met Chris and Eddie in the summer of 2017. Both Miranda and Ed were inpatient, both waiting for transplant. They had been there for a few months already and I kept thinking how scheduled and organized Chris was. I knew I had to figure out how to make hospital life work because we were in it for the long haul. We started having weekly dinners with a few of the other heart families. The support came just when we needed it. I learned what being a part of the heart family was all about. I learned how to be a heart mom. These moms, they got me, without me saying a word. These families became my family. These kids became my own.
Our stories are all a bit different, but at the core it was about these Warriors. They gave us strength when we didn’t think we had any left.
After another long stint in the hospital in the spring of 2018, our transplant team suggested that we get evaluated at the Children’s Hospital of Wisconsin so that we could continue our wait under a Pediatric Transplant team when the U of MN lost their surgeon. We had just learned about another teen that was also listed for transplant, but didn’t know anything else. I started following her Facebook page, Ashlyn’s Army. I knew she had gone to Milwaukee and only waited about a month and had been recently transplanted. I sent Angie a message telling her who I was, our situation, and asked how she felt about Milwaukee. In true heart mom fashion, Angie told me everything she could to help me out.
Ashlyn was back home before we went to Milwaukee and I don’t think we actually caught up with each other until August. We met in Milwaukee when we were both there for appointments. Since then we have learned that we only live 20 minutes apart.
The girls are very good friends. They get each other in ways that no one else can. It truly is a special bond.
Ashlyn’s Mom Angie
We first met Chris and Ed a couple of summers ago while Ash was in the hospital and Ed was waiting for his angel heart. For the most part, I’m a ‘keep to myself’ kind of heart mom. I never really reached out to or tried to meet any other heart moms, but when our journey lead us down the transplant road I knew I needed some support from someone who would understand, and Ash needed someone too. We got to know Ed in the playroom in the hospital and followed his journey praying and cheering him along through his transplant journey. Chris was a wonderful cheerleader and support for me while we went through the transplant process.
We had lost our surgeon at our home hospital and that led us to Wisconsin. Shortly after Ash was transplanted Melanie reached out to us. They were in the same boat as we were, and were deciding where to go. Miranda was listed for transplant in Milwaukee and received her heart a couple months after Ash. We met for the first time when we went to Milwaukee for an appointment and Miranda was about a week out from transplant. The girls were fast friends! It was like we had known them forever!
The kids understand each other. They’ve been through hard, scary, life changing experiences that ‘healthy’ kids don’t really understand. They don’t have to feel self-conscious of their scars, or feel weird when they have to stop and take a handful of pills. It’s their normal, and they all understand that. Chris, Mel, and I have been down the same roads, and we understand how amazing the milestones are. We vent when it’s hard and cheer each other on when things are going well. Their friendship has been such a gift these couple years.
Bottom line is, we’ve all been through the same icky crap. It brought us together, and I’m so happy it did! I truly believe God put these families in our path purposefully.
Eddie’s Mom Chris
Eddie’s wait for a heart started in January 2017 as a resident-patient at Masonic Children’s Hospital. After a few months on the 6th floor, some faces were starting to look familiar, but names were elusive. Eventually, Ed and I introduced ourselves to Ashlyn and her mom. We didn’t get a chance to talk often, both kids being on the constant move. In the summer, our paths crossed with Miranda’s family–familiar faces we remembered from Family Camp! Little did we know that both of these families would become so important to us. Ashlyn and Miranda have endured much teasing and joking from Eddie; I don’t think he realizes how lucky he is to have such amazing teenage friends! Even though our kids all came from different parts of the heart world, the fact that they all ended up in the transplant world really brought them together! We moms have been pretty blessed, too, by the friendships we’ve created. We are only ever a text or Facebook message way and have helped each other through highs and lows. The journey we’re on is a wild one, but making friends into family makes it bearable!
Miranda, Ashlyn, and Eddie at Family Camp in 2018