ALS · Big Daddy · Faith · Family

Bit by Bit

We do a lot of things in our lives bit by bit like riding a bike or learning to read. We take small steps forward until we have mastered the task or gained a new skill. We celebrate these accomplishments. We document them as parents for our children. Even the smallest of children learn that when we take life bit by bit we will eventually experience success. But what happens when bit by bit means the progression of loss instead? We get to learn how to live with it as we experience it and sometimes it’s ugly and hard to talk about.

We have had the opportunity to meet many amazing people who are living with ALS and other neurodegenerative diseases. Some we have embraced in person and they have become part of our family. Others we have embraced virtually as we have watched their own stories unfold. One man in particular, Steve Martin, shares regularly glimpses of faith and family amidst the chaos of this disease on social media. He can no longer uses his arms and legs and cannot use his voice to communicate. Bit by bit he has lost the use of his physical body.

Recently he shared, “I choose to focus not on what I can no longer do, but on what I am still able to do; not on the things I have lost, but on the things which I can never lose.” I know that this perspective was forged through losing control of his physical body day after day and like a diamond under pressure, his faith has been magnified. He went on to say, “The things that I still can do, and the things I can never lose, are so much greater than what has and will be stolen by this disease.” He doesn’t have to say that this disease sucks. That it is brutal. That it impacts husbands and wives, children and parents. That is obvious. Instead, he chooses to focus on the bits he gains even though he loses.

I wish that I could say life was peachy over at the Barrus house. That somehow we had found a magic cure or that one day Ben woke up and could walk again. Instead, just like Steve, he is losing bit by bit. These past two weeks have been especially hard as we have navigated new waters marked by loss of function. It’s devastating and horrific to watch your husband sob in the shower as you wash his hair because his arms and hands can no longer do it on their own. I am sure it is equally horrific for Ben to wake up each morning and wonder what he will lose next. We have cried many tears and have uttered many prayers. And, at times, we have focused on loss instead of progress. It is so very hard not to!

Today I watched my husband tutor some of our children as they did math factors and play Fortnite with others. I watched him have a tender conversation with a dear friend. I heard him say, “I love you” even though I made him eat atleast one time today when he did not want to. This disease does not get to take away these things. They will sit in my heart forever and hopefully in the hearts of our children and friends. Tonight I’m choosing to take Steve’s advice and focus on the things greater than disease and loss…family and faith. And for that, I will always be grateful bit by bit. I love you Ben. Forever and always!

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