It’s after midnight and I just finished having a tender heart-to-heart with my 13 year old. It’s not the kind I expected to be having — we didn’t talk about girls or music or baseball like we normally do. Instead, we talked about pain tolerance, life insurance, and muscle biopsies. We both cried a little and laughed. He’s now sleeping quietly on the floor next to my bed, like he did when he was four. And I keep whispering in the dark “You are wonderfully made”, as the tears fall silently down my cheeks. Perhaps more for me, than for him.
A little over two weeks ago, Boden was diagnosed with musclar dystrophy. It came totally unexpectedly after a routine visit with his rheumatologist. He didn’t like some of the things he heard and saw and sent us downstairs for some additional blood work. Two days later, we received the news over the phone and were referred to a neurologist for more testing. And now, on to the University of Utah for further tests, treatment, and evaluation to determine what type of MD he has. Even though we’ve had a little time now to digest the news and the next steps and the “what now”, I still feel a bit like I’m walking in a fog. Ben and I have spent quite a few nights crying and a lot of time praying. Despite knowing that our sweet, funny, brave boy has an incurable muscle degeneration disease we know he is wonderfully made by a loving Father. We are grateful for eternal families and for the family and close friends who have rallied behind us as we have struggled with this news.
Last month, I never would have imagined answering Boden’s tough questions, let alone that he would need to ask them. Some about life and death, some about time, some about God. But I am treasuring every one of these late night chats. HIs testimony and courage are contagious. His bravery and faith is a testament of his knowledge that his Father in Heaven made him perfectly to meet His purposes in this life. And while we struggle through this storm, we will cling to that knowledge and praise Him.