Who Gives A Shit Weekends

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In 1980 we left our five-month-old baby Chad for the first time with Mark’s parents to spend the weekend with friends Jim and Kathy Sterritt and Al and Melanie Jensen. We drove to Baldwin to stay in a friend’s rustic one-room cabin with no electricity or running water and an outhouse but we didn’t care because it had a big family-size table where we could catch up on life.

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Being young parents of a five-month-old Mark and I felt many emotions about leaving Chad. I remember feeling excited about having time to ourselves but guilty that no one could possibly care for Chad like Mark and I could, but we were wrong. Spending a little time away from our baby boy was good for all of us.

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Over the years our friends and us began to call these weekends away from our kids “Who Gives A Shit Weekend,” or WGASW. We continued WGASW at different locations from 1980 to 2000 and we were joined by more friends in later years, including the McKenzies, the Rosemas and the Babcocks. We skipped a few years along the way but pretty much every spring on a Friday morning we would meet at someone’s house and caravan to our destination with a stop in Pentwater for lunch and a beer.

As I write this story I’m smiling because on these weekends we laughed a lot and acted goofy. We shared our lives with one another and some of our secrets. We drank a lot but no one gave a shit because it was our WGASW. We were content being friends and just sitting at a table having fun.

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Each year we tried to choose a different location up north. We usually rented a big house but the only requirement was that there had to be a big table where we could sit together for meals and conversation. We prepared our meals together and always looked forward to Al and Melanie’s fish dinners. Our weekends almost always included a hike in the woods, the guys fishing and the girls shopping.

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We kept a diary of the funny things we did and talked about. Recently we pulled the diary out of storage  and one of the things we wrote in 1996 was what quote we would want on our headstone.

Kathy S. – Seize the day! She did live! She was blessed! She loved and was loved!

Jim S. – He loved family and friends!

Al – Born 1955 to Died 2055

Rosemary – Appreciate every day of your life! Enjoy life!

Mark – Life has been very good to me!

In the book I also found a beautiful note from Melanie that I can’t help but share.

I often mention to my other friends & family members that when we (our I don’t give a shit family) get together it seems like just yesterday all over again. We’re so comfortable. So at ease with each other no matter how much time has passed since we last saw each other. I think that means we are all darn fortunate to know each other and stay friends all these years. It is remarkable.

Relationships

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My friend Denise Ryan commented on a blog post last month and her comment has stuck with me because it’s so true, I do feel sustained by all of you.

Rosemary,

I’m humbled by your strength and the out pouring of loving kindness that has accompanied your journaling. We collectively hold you and Mark and the family in our prayers. I am so thankful that you continue to remind all of us that life is a precious gift and that our faith in God and the relationships that we form during this journey on earth is ultimately what sustains us all.

with love,

Denise

Searching for the Light

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Nine years ago my family and I dealt with tremendous sorrow. Easter was the first holiday after my brother Mick died. We wanted to make sure everyone had fun so we all pushed ourselves to make Easter full of love and joy. We played silly games and had a beautiful meal and tried to set the darkness aside.

Last week I received a beautiful email from my friend Karen Gardner reminding me of that same Easter. Karen said that it was the first family event of ours that she had come to. Karen’s daughter Nina was studying in Europe so Karen was happy to join our family. She probably knew that we were struggling, but now what she remembers about that day was how she saw a welcoming family that was sharing all kinds of love and she was happy to be a part of it.

Although we’ll never forget the pain, time has helped take the edge off of our sorrow.  I think maybe those dark days have taught us to alway search for the light, at least I hope that’s the case.

I’m wishing you all a blessed Easter.

Cole’s Kindness

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Last month while our grandsons were visiting we tried to get them involved in my care by letting them help me and they both tried their best to help in certain ways.

Cole, for instance, helped by feeding me apples and giving me my medicine.

Since I was confined to my chair, he tried to involve me in his card game by putting the game board on my lap and teaching me the rules. Even though the game board was too big and I didn’t understand how to play, he sat there and played with me anyway. After a while Peyton came along and played my cards for me.

Later I asked Cole if he would help me learn a speech app on the iPad. First he tried to tweak the voices to get one that matched mine but you had to pay extra so he decided not to do it. To help me use the app he would put my hand on the iPad but my hands didn’t work right so he tried to problem-solve by putting a blanket under my elbows. I still couldn’t keep my hands on the keyboard so we both just laughed. Sometimes he didn’t understand what I was saying and he would say, “I’m sorry, Grandma. I don’t understand. Could you please repeat?” And then we would laugh some more.

I should mention that Peyton was awesome too, he just had other things going on.

My goal for their visit was for those boys to grow with my illness and they seemed to adapt perfectly, just like they always do.

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The Storm Is Passing

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It’s been one week since I had surgery to place a feeding tube into my stomach. I thought it was going to be an easy surgery but it has kicked my butt. The doctor and my friend Rose said the procedure was flawless but shortly after surgery when I got home I was experiencing a lot of pain. I don’t know if it was due to the muscle spasms that are a symptom of ALS or not but I was having severe pain at the site of the tube. It felt like contractions.

We called Rose to see if this pain was normal. She offered to come over and check me out. By the time she got to our house she had already talked to Doctor Fox and he suggested I head back to the emergency room for a CT scan to make sure there were no internal problems. Rose stayed with us until we got the CT results. The scan showed no internal issues and I returned home. The spasms started to decrease, maybe due to the morphine that I was given in the emergency room. It was welcome relief.

After a week of sleeping on the couch and Mark sleeping in a lazy boy nearby, I feel like I am almost pain free. Now I am hoping that I can regain some of the strength that I seem to have lost since the surgery. It feels good to laugh again without the sharp pain in my belly.

As far as the feedings go it’s really easy for all of us. Instead of taking an hour to feed me, a meal in my feeding only takes 10 to 15 minutes and saves me the exhaustion of having to chew and the struggle to swallow. All of my medications can go in at the same time. I have managed to eat peaches, cheese cake, soup and popcorn the old way just so that I could taste them.

As we continue on this ALS journey the feeding tube will help to ensure that I get enough nourishment in a more efficient way.