For the next four weeks I am going to share some letters that I wrote to David near the end of his life. One of the greatest struggles I faced as David lost more and more of his cognitive abilities was my inability to communicate to him my how much I loved him and ached for him. I decided to start writing him letters that allowed me an opportunity to share what I was feeling and experiencing. He never heard them or had the ability to understand them. They were more for me than they were for him. Writing became a way for me to vent the emotion and pain of watching my boy slowly leave me.
Today we are going to Rochester with you to see Dr. Mink at Strong Memorial Hospital. He sure is going to see some major changes. I have to be honest that the hardest one for me has been your inability to enter into any type of give and take conversation. I wonder what you are thinking that you can’t express. I wonder what funny thought or joke passes through your mind. I wonder how many times you have wanted to ask a question or ask for something but you can’t get it out. I wished I could help you son but there nothing I can do. Your Mom and I have feared this step in your disease for years, and here it is. I get some peace knowing God understand everything that passes through your mind and that Battens does not limit his ability to communicate with you. I pray when your hear Mom and Dad say we love you that you understand that. I pray that God would protect you from the hurt of people slowly backing away from you because they don’t know how to talk with you. I love you David. I love your impact in my life and in many others. Hope you have a great breakfast with Dan Edsall. Don’t forget to pray that Daniel does well on his math final. Love you Buddy! Dad
(This is the letter I wrote him the next day.)
The trip to Rochester was long wasn’t it? I sure am glad we had a good dinner together with mom at Carabas. The meeting with Dr. Mink was hard for me David. Since our last trip you have lost so much. You tried your best to follow the doctors requests but you couldn’t. He would ask you to open your mouth and you would put your finger in your mouth and suck it. I was proud you tried your best but so sad you couldn’t follow his instructions. You didn’t seem bothered by it which I thank God for. We talked openly before you about your loss and the changes we have seen and you were unaware of what we were talking about. You played with the little fuzzy worm Dan Edsall gave you saying over and over again you were hungry, where are the girls, and when will we be done. The doctor said you will see most likely the same amount of loss over the next 4-6 months. That sure hit me and mom. Don’t worry though David, I rest knowing God will give us everything we need to love you, take care of you, and walk you through your journey with Battens. David, mom and dad have never told you that there is no treatment for Battens and that it is going to take your life. I hope we made the right decision. Sometimes we would wonder if you knew. I guess we can talk about that in heaven. You have lived your life to the full David and you have taught me so much. I hope you have a great day Buddy! Love Dad.