Seasons change, seasons come and then they go. Spring is springing here in Ohio. Ahh-choo. Colors are popping up everywhere. A fine green dust covers everything between the rain showers. Watching new life emerge on the trees, hearing the birds song through the open windows, reminds me that we did it. We survived another winter. As we gear up for summer and all that means for our family, I have to remind myself that where we are now is just a season and soon it to will pass.
I have been a bit hesitant to write it down (i.e. type it out) because even though I don’t really believe in some magical power that changes things if you say it or write it, I am afraid putting it out there will somehow jinx it. How is that for a run on sentence?
Peter is doing good, he is doing great even. He is doing great at school. He is growing by leaps and bounds in his reading ability. In his recent testing he did well and continues to learn new skills, facts, and ways of doing things. He is loving being a part of both the Ashland University and the Special Olympics Track and Field team. Over our Spring Break we went back to Tennessee where we had what we call our COVID year from June of 2020 to June of 2021. During that COVID year our lives were kind of on pause. We had no idea what the future held in that year. Some of the struggles we had with Peter in that year we know now were due to Batten Disease. But at that point we had no idea it even existed. Our focus was on returning to South Africa and then switched to focus on finding out where our new home would be.
Fast forward through a few season changes, we are now finishing our 4th year in Loudonville. In our four years here we have welcomed a dog and Jacob into our lives as well as numerous friends. We have added a number of diagnosis to our myChart lists. We have added a family moto of Choose Joy into the mix as well. Sometimes life is great, fun, and exciting and sometimes it is heavy, hard and exhausting.
There was some time in the fall where we all struggled. Peter was not sleeping well, he was dysregulated more than he was regulated, he was having trouble controlling his emotions and his body, there were lots of tears and frustrations, things were hard. After a bit of this we realized this was not going away and I began mentally preparing that this was our new normal. Around that time we reached out to his team at school and at Nationwide to involve them in the process of how do we adjust to this new normal. We changed some things, tried some things, the school team changed some things and tried some things and Peter began to do better. We also made some changes in his before bed routine and a few other adjustments and his sleep improved, which meant our sleep improved. That in and of itself was a game changer for everyone. I am relived to write that where he was this fall was not his new normal. He has been doing so much better, he is able to ask for help or ask for a break, he is being creative and thinking of new ideas, he has returned to being kind and empathic (for the most part…he is still a 9 year old boy J ). We are very thankful that where he was in the Fall was not our new normal. In fact our now new normal find us trying to help him be more independent in his daily activities, to do more to further his skills in academics and athletics. For that we are grateful. There are still struggles don’t get me wrong, however struggles are a part of life. It is up to us to Choose Joy when things are going well and when things are a struggle.
So today whatever season you are in remember this to will pass and change. If the season is good be thankful and soak it up, if the season is hard look for ways to choose joy and know that this will pass.
