When the flier came in the mail, I was sure we would not go. Large groups of people are not generally my thing. I read it anyway and thought about it for a few days. If reading the line about bringing something of your child’s to share reduced me to a sobbing mess how would I ever be able to sit with other parents and talk about Kevin? But the more I thought about it, I came to the conclusion that maybe this is exactly what we need. To spend time with people that not only sympathize with what has happened, but truly understand. I talked to Matt about it and we decided to go.
Emily was nervous. I think she thought she would have to talk about Kevin and it would be sad. The more I talked to her about it the more she got on board. She took her crinkled up photo of Kevin and his Little People cow that he loved so much. I thought it would be good for her to be around kids that had also had a sibling die. She could see that they were okay and in time she could be too.
On Saturday morning we headed to Iowa City. I was nervous. The tears were already welling up just thinking about what I would say. As we got closer I looked off to the left and on one of the exit ramps there was a truck pulling a giant (fake) cow on a trailer. It made me smile. When we entered the room it was quiet. We saw so many people who came willingly, but you know would give anything not to be there.
We split up into two groups, and we went to the one where I knew there was another heart family. I was good until the grandfather of the little boy with the heart defect started talking. The tears started coming, then a sob. I stepped out so I did not interrupt them. It was just really close to home. I came back a short time later and listened to the rest of the couples tell their stories. There were some that had older children die from cancer, a five year old died from a blood disorder, a 16 day old baby boy who never left the hospital, one tragedy after another. We each took turns telling our story and the story of our child who died. We also shared our special items - we brought pictures of Kevin and his book, Goodnight Baby. There were a lot of tears as everyone told of their sadness, but also smiles as the parents talked about the child they lost and the happy memories they have. It feels good for parents to talk about their children who are no longer with them.
We took a break for lunch and met back up with Emily. She was having such a good time. They painted flower pots and were going to plant forget-me-not seeds in them. She got to pick out a beanie baby as well. I was so glad that she was able to relax and have a good time with the other kids.
After lunch I got a chance to talk with the other heart mom in the group. Her son was actually in the hospital recovering from surgery when Kevin was life-flighted there. He died just a month after Kevin. She is also expecting a little girl later this summer. It was so nice to talk to her and go over our experiences.
At one o’clock we broke into different groups. One group for parents that had chronic terminal illnesses, and the other for those that lost their kids suddenly. I was torn as to which group we belonged to. I guess Kevin’s heart disease was technically terminal- I never thought of it that way though. I thought we had a good 10-15yrs of good health before we had any major health decisions to make. He was happy on Monday and dead on Friday. So in a way it was very sudden. Even though he had complex heart problems he was a happy and healthy little boy. We chose to go with the group that had lost children unexpectedly.
There were some new parents in the groups so we briefly went over our stories again. In this session we talked about the different aspects of grief that we all struggled with, including the problems we had with family, friends and the general public. It was nice to hear that I was not crazy that other moms had the same feelings and problems. We didn’t have to be afraid to admit some of the angry, bitter and jealous thoughts we have experienced. There was no judgment and no one telling us how we should act or feel. You could see it in everyone’s eyes that they understood what we were saying. It was an emotionally exhausting day, but I am so glad we went. I think it is great that the U of Iowa Children’s Hospital started this program. I think it will help so many parents.
Matt and I have wondered what we should do on May 2nd. We wondered if we should do something formal in remembrance of Kevin. After going back and forth we decided to have a quiet unplanned day at home. We had so many of those days with Kevin. No plans, just hanging around the house, playing outside and going with the flow. What better way to honor him than to spend the day how he would have. We will have a few friends and some family around and look forward to a calm, relaxing, peaceful day.