Twenty-two years ago I wrote about the power of writing, journaling, or keeping a diary. I have not stopped writing! It helps me to process my feelings and emotions. It gives me the ability to go back and be reminded of my life story. And it becomes a tool that I can share with others who are still on the journey of loving, caring, and raising children with special needs.
The following is an excerpt from my journal recounting the feelings we had when we heard the doctor say, “David has Battens Disease, a progressing, untreatable, and fatal disease. While it is hard to read, I am so thankful I took the time to jot down my thoughts. While I know you are already busy I would love to encourage you to take the time, even once a week, to jot a few words down about your beautiful, chaotic, exhausting, and delightful life story.
This is the first date found in my journal. It was David’s 11th birthday. A friend of mine gave me the journal after hearing me speak one Sunday on pain. She said I really needed to start recording my journey, thoughts, and feelings. My biggest concern in starting to journal was starting and not continuing. In fact, I jotted down that fear in my first entry. My next entry was 11/8/1999 followed by 06/11/2009! Ten years! I guess I’m a prophet.
Now I write on a daily basis. The counselor I have been seeing encouraged me to start writing letters to David as a way to express some of the things that get bottled up inside of me. I then share my letters with Brenda and we sit there and cry, pray, seek strength to deal with the pain of trusting God with our broken dream, the pain of David’s loss and struggle, and the battle of saying, as Jesus did, “Your will be done, not mine!” I also journal how I am hearing from God as I read his word and other thoughts, verses, or questions that often fill my mind.
The following is an excerpt from my first entry on 11/02/99. It is a tiny glimpse or peak into the first few awkward steps in our journey.
A year ago this Thanksgiving, our second son, David Gregory Pfohl, was diagnosed with a hellish disease, Batten’s Disease. He still doesn’t know the seriousness of his disease. David is legally blind. Two and a half years ago David was a normal sighted kid. He enjoyed reading, coloring, and all the normal things eight-year-olds like to do. It seems as if in the twinkling of an eye David plunged into the darkness of vision loss.
The pit I feel in my stomach as I write these words was magnified when the doctor told us the severity and untreatable nature of Battens. The feeling of helplessness was overwhelming. We walked to our car knowing that our lives had been forever changed. We were numb. We felt betrayed by God. We didn’t want to believe the doctors.
While we knew God was in control there was very little that we saw in those first few days that indicated any sense of control, care, or love from God. We cried daily if not hourly…We knew our thoughts were not clear. The pain was so real, so tangible you could feel it. It felt as if it would never go away. I would read a stupid Readers Digest article in the bathroom and begin to sob. I would lay in bed listening to Brenda cry so hard I thought she would die, yet I didn’t have the energy or knowledge as to how to help her, so I would cover my ears and pray she would stop.
Every time David stumbles or can’t find a toy sitting in front of him you are reminded of his loss. He no longer can see my face, to see my pleasure or anger. He often feels my face telling me I am going bald or I need a shave. I love those times.
From time to time I will share more of my journal with you. While the pain has remained a constant, our ability to see the hand of God has grown. We believe God is good and we believe God’s will is best. Thanks for taking the time to read this.