The New Year always brings a time of reflection on the year that has passed and dreaming and planning for the year to come.
I don’t typically make New Year’s Resolutions; I try not to make promises I can’t keep or set goals that are not reachable. Goals/resolutions like losing weight, being more organized, being late less, and finding a hobby are good goals/resolutions. But I have been on enough trips around the sun to know that the motivation for making those things happen won’t last the month, maybe not even the week.
The New Year is not the only thing that has me thinking about goals and the future. It is time for Peter’s annual IEP again. For those of you not in the disability or education world, IEP stands for Individualized Education Plan. It is a way the school districts help to make sure Peter’s needs are met and that education is accessible to him. Every year we review the plan and the needs of Peter and make plans for the year to come. We have an amazing team at his school, some of whom have been with him since he first started going blind.
Many of the questions are about Peter’s strengths and weaknesses and needs for the next school year. I really struggled to answer the question about his long-term goals. Peter has no idea that Batten Disease is terminal. My hope is that he does not know that it is terminal until they have found a lasting treatment or cure. We talk about what he is going to be when he grows up. If you are wondering, he plans on being a detective, scientist, construction worker, author, electric guitar player, and engineer. He is only 10, so he has no concept that he probably can’t really “be” all of those things or at least not all of them at the same time. I have no desire to tell him any different.
When I read the question, what are our (his parents') long-term goals for Peter? It seems cruel to write to be alive. But sometimes I struggle with how to think about the future with Peter. On the one hand, I want to think about knowing adult Peter. On the other, it hurts, and it is scary, and it feels cruel. Peter is currently on a medication that seems to be pressing pause on the progression of his Batten Disease. Basically (as I understand it), the medicine is clearing away the cellular waste that his body doesn’t deal wit,h and that waste is what kills cells/causes disease progression. So clearing some of that waste is helping to prevent cell death, which means less progression. We are so thankful for the pause that it is giving us. He has remained relatively stable for over a year.
The tricky part is that we do not know how long the pause will last. We do not know if and when the disease will start progressing again. Nor do we know if that progression will come in the form of a sharp drop off. We do not know if it will help to prevent seizures. Because the drug is new in treating Batten Disease CLN3, they do not know how it affects disease progression in someone who starts taking it at a younger age (9 in Peters case). Even while I am writing this, I feel guilty because at least he has access to a treatment. There are so many other families fighting battles against various forms of Batten disease and other life-limiting/life-altering diseases and diagnoses that do not have access to a treatment. For others, the only available treatment is invasive, life-altering, time-consuming, and/or incredibly expensive.
Most days we/I can stay focused on trying to choose joy, trying to make memories but also raise kind, helpful, little humans, for as we are blessed to be together. Other days, the grief of what we have lost and could lose can be a heavy load. On those days, I am thankful for a God who is with us, for all those who make up Team Peter who help us carry the load, and for two boys who find reasons to find joy in simple things and who help us to do the same.
If you are still reading my ramblings…my goal for the next year and for Peter long-term is a life, a joyful and fulfilling life.
