It takes a village....

It takes a village and we are beyond grateful for ours. 

Our village, the community of Loudonville over the last week has literally cheered us on. On May 10th High School and Jr High School athletes and elementary students spontaneously ran behind Peter and Joe as they made a lap around the track. But as a friend said my eyes which were already leaking started pouring when I watched what was happening. Several days prior Peter played the drums with the Loudonville High School Band and received a standing ovation. In both occasions tears flowed and the moments were captured to be recalled on the tough days. 

 Three and a half years ago Loudonville Ohio was someplace I had never heard of. I didn’t know there was a Nazarene Church here. Nor did I know that it had the best public Library around. Or that there street fair is pretty amazing. 

 Two years and one day ago (May 12,2022) I had no idea that the CLN3 could be combined to write a death sentence for my oldest son. I knew nothing of Batten disease or that genetic, progressive, neurological , and terminal were synonyms for the disease. 

 Over the last three years Loudonville has become more than a place where I am a pastor. Loudonville has even become more than a home. Loudonville and the people that make up this community have become our people, our village, our tribe. 

 Over the last two years we have ridden the roller coaster of emotions of learning that our son has an incurable, terminal disease. Most days we have settled into choosing joy, trying to make the most of every moment all while trying to lead lives as close to normal as possible. We still butt heads over rules, attitudes, boundaries, and all the normal stuff parents and an eight year old boy disagree on. We just have the added factor of his diagnosis. How important is whatever we are butting heads over? We offer snuggles, give the choice of going to his room to snuggle his animals, we compromise a little quicker, we distract from the argument and try to find easier and happier ground. 

We have the privilege and curse of knowing his days are limited. The question mark is when will the next decline happen. The other question mark is will science and clinical trials beat that next decline or will our sweet little boy continue to slowly slip away, losing abilities, and memories as cells die off. 

As I watched the community rise to clap for my 8 year old percussionist Batten disease was the furthest thing from my mind. As elementary students raced behind Joe and Peter and cheered him on, delayed clinical trials and symptoms were not on my mind. In those moments overwhelming gratitude for the village I knew nothing about filled my heart and mind. In those moments my tribe (both those present and those I know are cheering us on from afar) lifted us up and will continue to carry us on the tough days.  

Thank you Team Peter for cheering us on. Thank you Team Peter for lifting us up. Thank you Team Peter for causing tears of joy instead of tears of grief.

 A couple of important shouts outs – Mrs. Syler his amazing para-professional. She has been a part of Team Peter before it began. She has been Peter’s eyes at school. She is his school mom. She deals with the pendulum swing of his emotions day to day while trying to get him to do his work. Mrs. Abbie has been his TVI from the beginning as well. She is a champion for Team Peter. She helped make the connection to get Peters book published. Mrs. Syler and Mrs. Abbie push Peter to work hard and give grace on the days that he can’t. There are so many others who have been a huge part of Team Peter, our church congregation, his classroom teachers, the LHS cross country team, to name a few. These and the other members of Team Peter make the hard days a little less hard and the good days even better. 

Team Peter, today and everyday choose joy.