Fighting ALS, Fueled by Faith

It’s been over a week since I last posted and I’ve missed writing down my thoughts and reflections. It’s been a busy time and I’ll do my best to transfer some of what God has been doing in our lives into this post today.

For the last eight years in a row, this timeframe has been beautiful and challenging at the same time. College drop off. I don’t really think anyone can prepare a parent for the emotions you feel when you drop that first child off that first time, for us it was a double whammy because our oldest are twins. I remember our first drop offs eight years ago for my twins like it was yesterday. We had an emotional good bye outside of their dorms and then drove away, well not really. We got about a couple of blocks away for each and I had to pull into a parking spot because I thought I may wreck the car. All of us were wrecked with emotion and cried until we could actually collect ourselves and slowly drive away. It’s been a story similar to that with each child, each time. Well this last week was our final drop off for our youngest. There are always challenges with lasts and this is one we are still working through. Especially since her presence this summer has been an enormous strength to us as we have dealt with my diagnosis and major health issues and decisions with family in the area. God provided her to be at home at just the right time. For all of you reading this that are experiencing this – allow your kids to see your heart as you go through this. In the long run, they won’t remember the “stiff upper lip” you put on but they will remember your vulnerability and just how much it hurts you to separate from them.

God has been alongside us in a mighty way. His provision of support, information about ALS, development of the right connections, and opportunities for us to share Him with others have been amazing. I have been feeling well. ”Well” means that I have reduced energy that comes with ALS but am learning to manage my actions and rest accordingly. Maybe most importantly I have done a reasonable job of managing my mind, which is not easy. I have the help of my wife and family and an amazing support system, who love and inspire at just the right times. On the harder days I have learned to give myself a little grace and be ok with being restful. Giving ourselves grace is something we all need to stop and meditate on. Since my ALS journey began in my legs, I am particularly focused on slowing the progression in my lower extremities and so far, what we have been doing has worked. I will share a bit more detail about that in the near future.

This morning God has put on my heart Ecclesiastes 3:1. It’s time to develop a new rhythm in this new season of life. This summer basically everything has been turned upside down and we have had no routine whatsoever. We have prayed, adjusted, reacted and are now very desirous of getting into a rhythm. For those of you that operate better with routine you know exactly what I mean. If you want a way to pray for us, that is a good one.

I also wanted to take a moment to thank all of you for your love and support, it has been amazing and we are overwhelmed (in a good way) by the cards, texts and innumerable offers of help. We love you all and you have made this journey much more bearable by knowing you are with us. It has helped our world from shrinking into self pity and reminded us to keep focused on the broader perspective; to live in the victory we already have. Off to live the adventure He has for us today!