Our Journey

Four months ago, on January 24, 2017 our son Graham entered his forever home. Graham was diagnosed with an incurable rare disease – Alpers-Huttenlocher syndrome and the prognosis is poor. The disease caused Graham to have uncontrollable seizures, brain atrophy, and liver impairment which caused his liver to fail. Alpers’ disease is caused by an underlying mitochondrial metabolic defect of POLG. Prior to his diagnosis, we were naive to mitochondrial disease, epilepsy, and other rare diseases. Now, these terms are a part of our permanent vocabulary and our lives are forever changed.

After four months, our hearts are still broken, but we are healing. I will always be Graham’s mom and he will always be a part of our family. This is why our life will never be like it once was, but we will find a new normal for us. We know that whatever this new normal looks like, Graham will always be a part of it, just in a different way than we originally planned. When thinking about God’s plans for us, I know God chose us to be Graham’s parents. He gave us the most perfect son, who was also very, very sick. God chose us to care for Graham and to love on him. And when Graham became sick, and it became clear that God’s plans differed from our vision, we had a choice. Do we blame God and turn against Him? Do we doubt God’s plan for us and ask, “Why?” Or do we praise Him and trust Him? Do we pray and ask for Him to show us a meaningful purpose to His plan?

Every day we face this choice. And every day is different. There are days when we feel God’s presence with us and know everything will be okay. But then there are days filled with tears and questions. On those days, it is a difficult to remind ourselves that God is good when the unthinkable happened to us. It is a struggle to see His goodness because we are flawed. Our human flesh is weak and it can prevent us from accepting God’s plans. On those days, I remind myself of God’s grace. “Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow.” (James 1:17) God gave us the most perfect gift – Graham. And even though our time on earth with him was short, we will be reunited one day. And God will continue to shower us with gifts of His love. His love for us is everlasting and it will strengthen us when we need it.

When Graham was hospitalized I started a Caring Bridge page to communicate with family and friends about Graham’s condition. When Graham passed away, I stopped writing. Since my last post on Caring Bridge, many people have asked me to continue writing posts. I never envisioned I would create a blog, or share my story so publicly, but it’s been on my heart these last few weeks. I do not know what God’s plan is with this “blog” but once again, who am I to question Him? I will continue to trust Him to lead us on our journey. I must warn you, I am not a writer, and I am definitely not a expert on anything, but this is my attempt to keep Graham’s memory alive and to provide hope for others who need it most.

I envision this blog as an outlet to share our grief, but also our hope for a brighter future. I see it as an opportunity to raise awareness about rare diseases, but also as a way to keep Graham’s spirit with us every day. As his mother and his #1 fan, I want Graham’s memory to grow & impact as many people as possible, hence our title #growgrahamgrow.