Our Family's Journey: Grandchildren and ALS

I was blessed as a child to live within a couple miles of my grandparents home in Susanville CA. With my buddy, Suzie Miller, who lived next door, we would walk uptown always making a stop at my grandparents house for cookies and milk. The world was a little different back then and we had more freedom than children do these days.

Patrick and I have four wonderful grandchildren (Anthony, 10, Christian 6 11/12, Sofia 1 9/12 and Elizabeth 6/12) that live within the same distance as I did to mine growing up. Although, I doubt they'll ever be able to walk over for milk and cookies we still see them on a regular basis.

They are funny to be around and make us laugh with the way they see the world. So how do you explain ALS to a young child? With the initial diagnosis, our daughter Corrinne, spent a considerable amount of time trying to decide how to, how much and when to tell them. At that point she only had Christian and Anthony and they were 8 and 5.

When you are first hit with an ALS diagnosis, it's difficult to manage, so initially time is necessary to gather yourself and think through your own feelings. At this point you're still trying to figure out what ALS is and what the diagnosis means. Generally, with ALS you do have time to ponder - there is no surgery or treatment to start, the progression doesn't happen over night and grandpa won't look any different a couple days later. So, Corrinne took her time before telling the boys, she and I had a number of conversations and she told them a couple months after his diagnosis.

When my grandmother died, Corrinne was about 8 years old. This was quite difficult for me and a tremendous loss. At the time I didn't understand it but Corrinne would ask questions about my grandmother's death for a number of years after her passing. It was not my favorite conversation as it seemed to tear open a wound that I found painful. Fortunately, I read an article about children and grief and it described how children can only understand grief to the extent that their brain is developed, so it's common for them to ask questions as they get older based on their level of comprehension. This was certainly true with Corrinne and it helped me to see it from her perspective and help her through the process of grieving.

I think the boys understanding of ALS with its losses and changes is similar to Corrinne's in the journey of understanding. They comprehend as they go and manage information to the extent that they can based on their own development. The initial news was quite painful for Anthony, he cried and asked quite a few questions on ALS and what would happen to grandpa. Christian had less of an understanding due to his age, but still understood that the news was not good.

Let's be honest, ALS is a weird disease, even from my perspective I don't fully understand some of the symptoms and challenges that Patrick faces. I am just an observer. I know the boys don't totally understand things either. When the lift was installed, Christian asked why can't grandpa take the stairs. I don't remember the explanation we gave him, but I suspect it wasn't sufficient because in an effort to be helpful he decided to show grandpa how to go up the stairs. "See grandpa, just put one foot on each step." Justin whispered to Patrick - you can slap him anytime you want. Which gave us all a good chuckle.

Patrick used special silverware to feed himself for quite a while and we had two sets. At every Sunday dinner, the boys would fight over who got to use the second set - they were cool and different. It's the perspective of a child. At Christmas dinner this year Anthony and Christian both wanted to use the special sets for dinner. At dinner Anthony realized that grandpa wasn't using them anymore, and asked why isn't grandpa using them. We explained that grandpa can't use his hands for eating anymore - a well of tears filled in his eyes. The realization of the loss and ALS progression hit him in that moment and it was quite sad to see his face acknowledge the understanding.

We took the boys out for clothes shopping recently- it was one of our Christmas gifts to them. Since they go to a school that has uniforms - buying clothes is pretty straight forward but we always make the event fun going to the mall, letting them select a shirt of their choice to wear at home and going to dinner. They both selected a funny sweatshirt... and we went to one of their favorite dinner places, Black Bear Diner.

On this outing, I started teaching them how to latch grandpa's chair down in the van and Patrick has them push the buttons on his chair when he needs assistance. They like to be helpful and Anthony and Christian both expressed pride in helping grandpa.

I think the outing got Christian thinking because at dinner he said, "I remember when mom told me grandpa had ALS, I went to my room and cried all day. I'm sorry you have ALS grandpa." It really came out of the blue, but in hindsight I think it was his observation of Patrick and being helpful that led him to thinking about it. I wish my grandkids didn't know what ALS was, but they do. I am pleased, however that they are learning compassion, kindness and empathy for others. These are the unexpected gifts of a horrible disease.

Since the outing was such fun with the boys, I'll leave you with these photos... (a reminder to myself that the world is different from 4ft tall)