Melissa and Al Merrill’s Parent Diary, April 2013

I am writing this to provide some insight to my life as a frustrated father. This is a difficult journey that we are on with no clear cut path to follow. The things we have had to endure are painful and seem to only want to get worse with each passing day. I can only hold onto my faith in God and his will for my family. This is a narrative of my anger, pain, and sorrows that I have encountered to this point in our journey.

To understand some of what I feel you have to have a glimpse into my past. You see I had a very tough up bringing that I was not pleased with. I came from a split home. I spent my whole life mad at God. I felt I always got the short end of the stick. That shaped my life into allowing me to make some of the most awful mistakes I could ever make. My self-centered attitude took me down some of the darkest places one could imagine. The worst part was becoming an alcoholic. That path allowed me to be selfish my entire life even after I became married and blessed with a wonderful family. It wasn’t until 8-26-2012, that I surrendered to one disease only to become confronted with one more devastating than anything I have ever endured. Even as our lives as a family were going well, the unseen damage was already taking effect but I could not see it.

I always used to pride myself on the fact that I was nothing like my own father. I never left my kids; I stayed married and was there. I was there to fix everything that needed fixing when any of my children came to me. That gave me justification I was not my father at all. I retained an ego that enabled me to drink even when we could not get answers to what was wrong with Chelsea. I finally gave up in August of last year and surrendered. I never really knew what it meant to be there for Chelsea until that point.

I still remain angry at my life but have come to realize that it is not about me or what I want. Our journey with this disease has been traumatic, not only on Chelsea but our entire family. Two years ago when her physical symptoms started to show, we had no fears. As things started to progress and her health started to get worse, I became really concerned. As a parent you know when things aren’t right, getting those to believe you and actually listen is and was hard. Having doctors tell you that it is one thing, only to watch things get worse is brutal. We went to doctor after doctor for almost 2 years. We would drag all of our health records and present evidence that there was something really wrong but they just wouldn’t help. It wasn’t until our rejection from Boston Children’s Hospital our first time that I finally got our prayers answered. Of all people, God, the one I was mad at the most, finally opened the door. The answer came in the form of Dr. Alexa Craig and Dr. Peter Morrison. We went to Maine Med in Oct. of last year.

While on our first admission, I read about Lafora disease. I knew then in my heart but I didn’t want to believe. My faith has really been put to the test since this has happened. I have to continue to believe that there is a purpose for this but it is really hard. As our battle continues with this disease, each day brings new frustrations and hopes. I will forever continue this fight to save my daughter or anyone else’s that I may. This is not the last page in our story or anyone else’s but even though we all struggle I know God is with us all.