I remember one year ago very clearly. We had appointment for Peter at Cleveland Clinic with a Retina Specialist. We were hoping for clearer answers on why Peters visions was disappearing so quickly. We planned to get lunch in Cleveland and go to one of the beaches by the lake afterwards. I had trouble finding parking and had to back out of several interesting places. In the waiting room between test and appointments we were reading “Odder” to him. It is a book about a sea otter that gets lost and details his adventures getting back to his family.
We were in the room with the retina specialist when we first heard the words Battens Disease. He found the diagnosis when combing through his myChart file. Our genetics specialist had buried the diagnosis in his file while she confirmed the results, her call would come the next day. The doctor at Cleveland clinic said that the Batten’s diagnosis was consistent with what he was seeing in his retina. He apologized to us. He printed off a paper explaining more about Batten’s disease. His look and demeanor told me it was not a hopeful diagnosis.
I skimmed the first few pages of the paper while we drove to lunch and then the beach but didn’t really look at it in depth until we started our drive home. Peter was in the back seat oblivious to what was going on. He was listening to an audiobook. I remember reading the phrase life expectancy late teens early 20s. I remember throwing the paper into the console between Joe and I and sitting in silence. I did not know how to process what I was reading. My son had a life expectancy. He would likely pass away before he was fully an adult. Not only that, but in the years to come he would progressively lose all of his abilities. His vision loss was just the first in the series of things he would lose until the disease ultimately takes his life. Tears fell silently down my checks. I was thankful that Peter could not see his momma face when he asked a question from the back seat. Eventually I picked the paper back up and continued reading about this disease that would slowly steal my first born from me. The paper detailed all the different types of Batten’s disease I started skipping over the parts of paper that described those, I couldn’t process it all. The disease was genetic I learned. Both Joe and I apparently carried the same mutation that when joined together has a 1 in 4 chance of resulting in an Batten affected child. Peter had lost the genetic lottery.
We arrived home and went through the motions of eating dinner. Keeping up appearances or least at the sounds and motions of normalcy for Peter. I still hadn’t been able to share with Joe the full scope of his diagnosis. It was also the 2nd Thursday of the month which for us meant our monthly board meeting. I had already texted and asked for it to be moved to our home. So we busied ourselves with preparing for that. Trying to forget the new reality we now lived. After the meeting was over and Peter was asleep I remember falling into Joe’s arms and again feeling the weight of it all without the distraction of busyness or the strong face of parenting. I was 6 months pregnant at the time so my emotions on a normal day were heightened, that evening I was a mess. That night I searched the internet for more information on Batten’s Disease CLN3. There was not a lot of information but what there was gave no relief to the anguish. No treatment, No Cure, Progressive, Degenerative, Seizures, Dementia, Terminal were all words that screamed at me from articles and stories I was finding. I remember going to sit in Peters room and I just stared at him.
Fast forward one year later, and the evening of May 12th I found myself sitting and staring at Peter again while he slept. It has been a full year. We have tried our best to cram as much life as we could into that year. There have been moments of happiness, laughter, and joy. There have also been moments filled with questions, fear, frustration, tears, pain, and sorrow. As much as we could we have tried to make the most of each moment that we have. We have tried to do little and big things to enjoy the good times we have together. With the help of our community and other organizations we have built a tree house, we went to Disney, we went back to Tennessee, we tried to fill as many days as possible with laughter, love and fulfilled dreams.
One of those dreams was to write a book. In first grade Peter started talking about being an author. He has several stories he recorded or dictated on his iPad. We thought it was a bit a fad that would pass but he continued to say he wanted to be an author. So we started talking about what he would write about. From there emerged the idea of telling the story of some of the adventures Peter goes on from the point of view of his white cane, marshmallow. We worked on the story over a few weeks. Peter took his story to school and people loved it. Peters TVI connected us with a children’s book publisher. And Peters dream of being a published author became a reality. May 12th, 2022 was a dark day filled with questions, uncertainty, sorrow and fear. May 12th, 2023 was a day filled with hope, with community support, with joy and excitement.
Over 200 people filled the downstairs of the Loudonville library. Each book got a stamp of Peter signature from 1st grade and a Braille sticker that said Love, Peter. There were pretzel rods decorated to be like mini marshmallow canes, there were braille and tactile resources for people to explore. There was lots of conversation, laughter, and pictures. It was an uplifting event where many from the Loudonville Community and beyond came out in support of Peter and his book. It was wonderful to focus on making dreams come true and reminding people that differently abled doesn’t not mean unable. Peter got to be a published author, have book signing, be on TV and will be in the newspaper. May 12th 2023 was filled with moments we will always remember. When his Battens disease causes him to forget we will be able to remember for Peter and tell him all about that awesome day that it was.
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