Living with ALS: Finding the meaning and the impact

Today’s post is authored by Joan Sucher, who was diagnosed with ALS in early 2013. Joan and  her husband, Tom – married for 46 years — have three children, Craig, Kate and Kristen, and seven grandchildren ranging in age from 14 1/2 months to 16 years.  Joan insists that despite ALS, her life is “full, rich and blessed.”

By Joan Sucher

 

Sucherfamily2
The Sucher Family (minus Harper)

Each of us faces challenges in our lives and it can be very hard to see the goodness in those challenges. But to make our lives meaningful and impactful, we must be willing to look harder.  And, as my decline has become much more apparent thru this past year, I think I have found my goodness, and it is in our grandchildren.

I would love to not have ALS.  I would love to not be reduced to being an observer of my grandchildren as they witness my physical weaknesses and the realization that the things we used to do together are no longer possible. I would love that our youngest granddaughter, Harper, not remember me as the grandma who could not do Grandma things with her. But, I do not have the luxury of choosing this.  What I can choose, is to believe that these children are learning positive lessons from my journey. How I am living this life is impacting them. Harper Jane is only 14 months old, but with our 6 older grandchildren, I have experienced real compassion, care, love and unselfishness. If nothing else, that is success. And, are these not the very qualities we want instilled in our children from the get go?

Mackenzie, our oldest, silently watches over me when we are together, she is quick to lend her arm but she never asks.  She accepts what is happening and is there for me. Shortly after my diagnosis, Mackenzie and I were sitting at mass together, and as luck would have it, it was day of the blessing the sick.  Our priest asked all who were sick or hurting to gather on the altar and he would pray over each of us. Well… I didn’t budge.  My pride was not about to let me walk up there for all to see. But, Mac looked at me and said: “Grandma, you need to go up, it will be ok, it will be good.” Can you imagine the emotion I felt? Here was my Granddaughter telling me as gently as she could, that I was sick, I needed the help and it was ok.  She was right of course, and so I did as I was told.  Mackenzie accepts, she sees, she is impacted.

I have learned with Tyler, our oldest grandson, that still water runs deep. As a class assignment this past December, he was asked to write a Grown Up Christmas List. I was blown away. He wrote, “….When given this assignment, I knew what I wanted placed on top of my Christmas list, it is for my Grandma who has ALS.”  As I read his paper, I wondered, how many times do we think our children are not listening, when, in fact, they are absorbing everything we say.. He concluded his paper by saying, “My Grandma would want us all to know we have all been blessed. She said life isn’t always what we want it to be, but what, in fact, it is.  Her goal now is living life with a purpose.” Ty accepts, he sees, he is impacted.

Joseph, our third grandchild…. never speaks to me about my ALS, but he opens the door for me and holds out his arm for me to grab whenever near me. During the 5 days we recently spent together on vacation, I couldn’t help but think more than once, what a young gentleman!  And, what really hit me hard…. He designed for himself a new, bigger, better baseball glove  and had the ALS emblem sewn on it. He didn’t tell me, I just saw it one day on his glove. Joe accepts, he sees, he is impacted.

Abigail, our fourth grandchild….has a creative and artful mind. It is obvious she did not get that from her Yallaly/Sucher grandparents, so it is a treat for us to observe this in her. We were together with Abby as well a couple weeks ago, and though she never speaks of my ALS, she was a big help…helping to prepare meals, cleaning up and picking up. I didn’t ask and she didn’t say, she just did. And as a service project for school, she and her friend have taken it on themselves, to hold a lemonade sale stand and bake sales at different sites (like here today) with proceeds going to the ALS Association. Abby accepts, she sees, she is impacted.

Ali Catherine, our fifth grandchild, is probably the most active. The busier she is, the happier she is. She is a great big sister to her new baby sister, Harper. As with most children these days, she loves to read and I am amazed at how well she does for only 7 years old. When I want to talk to her, I will write on my iPad, but instead of pressing “talk”, she will read out loud what I have to say. A few months ago, while staying at our house overnight, she said: Grandma, I wish you could talk again, but since you can’t read to me, I will read to you. And, she did. Ali accepts, she sees, she is impacted.

Sydney is our sixth grandchild, our flower child…always happy, always smiling, always seeing the good. When she sees our car drive up in her driveway, she will run to my side.  She reaches out her hand and walks with me into their house. Syd is four, and can read only a few words.  But when I was putting her to bed one night at her house, she got out her favorite Dr Suess A B C book, and she started to try and “read” to me. When she would get stuck, she would say, “Grandma, write it on your iPad…” I would, she would press talk, hear the word, and then go on. I love these little people! I have to share one more story about Syd…  As you all know, with my ALS, my tongue, mouth, and lips are unable to do their job managing my saliva.  In short, I drool. Recently, Syd was sitting on my lap while playing Yahtzee with the kids. My drool got away from me and landed on her arm. She said: “Ewww, Grandma, yuck, your wetness got on my arm!” Then, she proceeded to get a napkin, wipe my drool off of her, then looked up at me, smiled, and proceeded to dab it off my shorts. Syd accepts, she sees, she is impacted.

And then there is sweet Harper, 14 months old…She and I speak the same language…we, coo, and, ah at each other. I have definite limitations with Harper, but I can hold her when I’m sitting, I can rock her, change her, feed her, and cuddle her. Harper accepts my limitations. I see, I am impacted by her innocence, and her unconditional love.

Harper and grandma
Grandma Joan and Harper at 4 1/2 months old

More than a few times, I have read Lou Gehrig’s speech as he announced his retirement from baseball.  He shared some awesome thoughts, and I can relate to every point he made. I am not, however, a famous baseball player or a famous anything.  But, what I am, is one proud, and lucky wife, mama, grandma, daughter, sibling and friend. So, I would like to quote Lou Gehrig, because he said it so perfectly:

“I might have been given a bad break, but I’ve got an awful lot to live for”.

Thank you all for listening, and walking this journey with us. God bless you!

4 thoughts on “Living with ALS: Finding the meaning and the impact”

  1. You are an inspiration to all! The way you take everyday and make the most of it is incredible. God bless and my prayers are with you and your family.

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  2. Joan, your essay is such a strong, beautiful tribute to your family. I admired you as a mother to your children and feel honored to have this glimpse of you as a grandmother. What a legacy you and your husband have given to our world. As all of you continue your journey as a family, please know that you are in my prayers.

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  3. You are such a wonderful wife, mother, and grandmother!! Your family is so very blessed by your beautiful outlook on how to live with passion and love no matter the circumstances. God bless you and your family through this journey.

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  4. You are such a wonderful wife, mother, and grandmother!! Your family is so very blessed by your beautiful outlook on how to live with passion and love no matter the circumstances. I have personally seen how loving your family is – you have done a wonderful job teaching them over the years as mother and grandmother. God bless you and your family through this journey.

    Like

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