Silver Lining

Cindy is in Washington D.C. this week with Corbin on his 6th grade field trip, so she asked me to write a “guest” update. My family and I have been friends with the Ziemkes for years, ever since my oldest son Jacob attended elementary school with Cayden. Cindy’s only instruction to me was to make this update inspirational, and so I’ll try.

If there is one thing I’ve learned from Cindy’s brutally honest, and heart wrenching, weekly updates is that transparency reigns supreme. At a time when some might retreat to the confines of their home and shut-off the world in bitterness, Cindy has allowed us to enter the holy of holies and partake, even if only vicariously, in the profound sacrifice for which they have been burdened. In other words, Cindy has chosen to lay bare her soul to us during the trial of her life. That to me is incredible.

I’d like to follow Cindy’s standard of transparency and share a troubling thought that for me materialized soon after Curt’s diagnosis. The phrase can be said in many ways, but this metaphor conveys the idea succinctly:

“Every dark cloud has a silver lining”

It comes in many flavors like: “God has a plan”, “God is in control”, “everything is going to be fine”, “things work out for the best”, “out of tragedy will come good”, etc. They are the phrases I first thought of when I heard about Curt, and the ones that surprisingly were least consoling to me. I had grown accustomed to relying on them as the catch all answers to counsel friends during troubling times, yet now they just seemed trite, at best. I couldn’t shake the fact, ALS shows no mercy. The endgame is known, it breaks apart families. All those phrases that were once a comfort were now troubling me.

The thought became even more haunting as I realized that if I couldn’t, in good conscience, offer such comforting words to the Ziemkes then how could I ever rely upon these phrases during my times of despair. Knowledge of Curt’s diagnosis brought to light how my, nicely wrapped world view, was flawed. Cindy’s request for me to write this update forced me to dig deep and wrestle with that which I would rather repress.

The insight I am about to offer you isn’t worthy of a drum roll, and there is no Heavenly revelation, yet I find it to be my source of hope and inspiration amidst this situation. I realize my problem with those phrases wasn’t in what they were saying, just the incorrect interpretation I superimposed on them. I looked to them as some sort of explanation as to why God would allow, or dare I say cause, such an event. I was wrong. The mysteries of God will always remain mysteries. Those phrases, and the concepts they represent, aren’t supposed to shed light on understanding the ways of God during a tragedy, but our response to it!

Now I realize why the Ziemke’s story has been both a source of great sadness and also one of deep inspiration, a unique blend of emotions I must admit. Curt’s illness is one of the saddest events I’ve ever experienced, and the Ziemke family’s response to it one of the most inspirational. Through it all Curt has remained the most positive person I have ever met. I have never seen him display a single emotion of anger or frustration. He has allowed his kids to throw him in the pool and lift him into bed...all the while grinning from ear to ear. If there is one person who lives life to the fullest, and extracts every last ounce of life out of every moment, it would be Curt. Clarissa, Cayden, and Corbin have stepped up to pick up the slack in all the things necessary to keep a household running. They don’t mope around feeling sorry for themselves, but follow Curt’s example in remaining consistently positive. Cindy has allowed all of us friends to not feel weird during any of this, but free to talk, laugh, and cry with them. She is a pillar of strength, the glue that binds them together.

The dark cloud is oh so real, yet the silver lining just as real. Curt, Cindy, Clarissa, Cayden, and Corbin...you are the silver lining! Your display of strength, courage, openness, closeness, hope, compassion, honesty, and love inspire me in ways you don’t even know. There it was, all along, the silver lining right in front of my eyes, it was you guys.

Love,

Steve Gallie

"The most important thing in life is to learn how to give out love, and to let it come in."
Morrie Schwartz (who passed away from ALS on November 4, 1995)

from "Tuesdays with Morrie"

Cayden and Jacob, August 2007

Jacob and Cayden, August 2008

The Ultimate Friend

Dear Friends & Family,

Curt has a lot of friends. Many people notice this fact and compliment him on it. I have been thinking about how and why Curt has so many friends. Here are a few of his attributes:

He listens more than he talks.
When he says he will be there, he shows up.
If you drop something he picks it up.
If you break something he helps you fix it.
He notices tires that are about to go flat and warns people.
He is ALWAYS cheerful.
He says “hi” to everyone.
He offers personal advice only when asked for it.
He is generous.
He doesn’t keep score.
He remembers names.
He is always fair.
He notices friends collections and when he sees something they may like, he buys it for them.
He takes time to teach what he knows if you want to learn.
He is always encouraging.
He takes time to notice things; new earrings, new haircut, a new flower blooming, etc.
He offers practical knowledge.
He doesn’t gossip or talk bad about others.
He doesn’t lie, cheat or steal.
He remembers friends favorite drinks, desserts, etc and always has them on hand.
He never judges anyone on their stance in life.
He works hard whether or not anyone is noticing. 
When he talks to you, he looks you in the eye.
He doesn’t expect you to agree with him.
He is not jealous.
He is loyal to his friends.
He rarely complains.
He takes time to talk to children.
He takes time to talk to elders.
He takes time to greet strangers.
He ALWAYS SMILES!

To have friends, you have to be a friend. I think many of you will agree, Curt is the ultimate friend!

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

Saturday Night - hanging out at the Wards!
Thanks for having us, Bill & Rae Lynn, we had a great time!
Lori, Al, Cristina, Bill, Larry, Bernie & Rae Lynn

Mushrooms

Dear Friends & Family,

I don’t like mushrooms. I never have. I think it may have something to do with the fact that mushrooms grow in dark and damp places. It doesn’t seem right that something should grow without sun. We don’t eat mildew, moss or stalagmites, why should we eat mushrooms? I have spent a lot of time picking mushrooms off of salads, pizza (I hate when they hide them under the pepperoni), and out of pasta dishes. Curt loves mushrooms, so luckily there is always somewhere to discard those nasty things; right onto his plate. One of our favorite “mushroom” memories was a time we were invited to a neighbor’s house for dinner, we were young and newly married, the hostess was a single older woman. We sat in her formal dining room as she served us mushroom soup, beef stroganoff with mushrooms and green beans with mushrooms. Curt looked at me like “How are you going to handle this dilemma?” I pushed the food around my plate until she would get up to go to the kitchen, which thankfully she did several times, then I would scoop up portions of my food and quickly place it on Curt’s plate. We were laughing in our hearts the entire meal. Another mushroom story takes place each time we go to one of our favorite restaurants; The Bottle Inn, in Hermosa Beach. We have been dining there since we were in high school. My favorite dish is chicken imbotito, which is chicken stuffed with prosciutto, swiss and mushrooms. The waiter has been there for over 30 years and he knows our standard orders. When it is my turn to order he says “Imbotito with extra mushrooms" (meaning he remembers no mushrooms) we all laugh. Then he brings the salad and usually forgets to forgo the mushrooms, so I patiently pick them off and add them to Curt’s plate, all the while laughing.

Yesterday an early morning phone call woke Curt before his usual time. He lay awake in bed while I was gone taking Corbin to school. He said he tried to move his foot for 30 minutes. Not for any reason, he just wanted to be able to move it. He tried and tried with all his might, strength and will. He could not move it. As he told me this story last night, I felt so sad for him. He used to be the strongest man, full of determination and able to do anything he set his mind too. Now all he wants to do is move a foot and he can’t. I wish I could give him some strength. All I could do was assure him that I will always be here and happy to move anything he needs moved. He thanked me for being his cheerleader. I wish there was more I could do to ease his struggles. We snuggled in his hospital bed for awhile and I went to bed feeling sad.

This morning I watched him as he slept. His breathing was shallow and quiet, his mouth was slightly open and chin was dropped back; he looked fragile. His frame is tiny, his shoulders and torso are barely protruding under the blanket. He seems so small. My man is slowly fading away. Shrinking before my eyes. I think about the last two and half years (since his diagnosis) and how amazing and brave he has been. I have always felt blessed, but now more than ever. I can’t imagine life without him, even in this state. I wonder if denying a ventilator and feeding tube (which would prolong his life) was the right decision. But I know he is suffering, he doesn’t want to be trapped in bed hooked to machines. I bring myself back to the moment and remind myself to make the most of today. I wake him with a kiss and thank God for another day together, being together is what is most important, mushrooms and all!

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

Thanks Jeanno for the giant sourdough Crab bread! We invited our neighbors
Larry & Debbie over and had a soup dinner while we tore into the crab!



Saturday night with Bernie & Lori!



Enjoying a beautiful day outside Sunday!

Cayden spent all day re-vamping this mini bike that was given to him. Looks great!

Clarissa, Stephanie, Jessica & Julie off to the Zac Brown Concert!

Video: A glimpse of our Sunday afternoon!

The 1980s

Dear Friends & Family,

The '80s music channel was playing in the background as Curt and I were sharing some intimate time the other night. Tears rolled down my cheeks as I lay beside his lifeless body. I took his arm and put it around me. I laid there thinking about when we began dating in 1982; walking together through the halls of West High arm in arm. In 1984 we graduated high school together, our families gathered in the stands and friends were all around us on the football field. There was never a dull moment in the '80s; friends, weekend trips, parties, hanging out at the beach, we were young and free.

In 1988 we were married in front of 300 friends and family. We moved into our first house that same week. We worked together each evening and weekend and renovated it room by room. Although we both worked full time we always made time for parties, trips and future plans. We both had tons of ideas and the energy and strength to get them done. We were a team and nothing could stop us. The 1980's represented fun, freedom and dreams. Here we are 30 years later, the cool songs are still playing but the fun, freedom and dreams are gone.

Thanks for praying.

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

We were all so excited to go to lunch with Lynn who was here for a visit from New Jersey!
Me, Margie, Lori, Jaime, Carolyn, RaeLynn & Lynn

A little get together at the Melanson's in honor of Lynn's visit!

We're all together again!

A fun dinner at El Taco with Mark, Kelli, Mike and the El Taco Man
we found hiding in the kitchen!

Easter Dinner at Barbara's

Clarissa & Cayden spent Easter Weekend at Lake Nacimiento with my Dad & Mom

Lunch at Buca di Beppo, Vans Skate Park and movies with Landon & Trevor today

 Corbin is really loving his daddy and taking it all in.

For Richer or Poorer

Dear Friends & Family,

During the planning of our wedding, Curt & I often joked about changing the line of our wedding vows from “For richer or poorer” to “For richer or richer”. Our 22 year-old minds were telling us that we would never be poor. We had boundless energy, determination and were committed to our goals of working hard, making time for fun and saving for the future. We also knew that our lives would always be rich, whatever our financial state. Being rich or poor is a state of mind.

Now, more than ever, we are experiencing richness beyond belief. When facing death, life becomes more real. While some people with a terminal disease may choose to give up on life and shut down; Curt has chosen to make the most of it. The words “poor me” are not in his or our vocabulary. Living while dying is not fun or easy; but it is rewarding. The clarity of the love between the kids and us is something we would not take time to notice or dwell on if we were living our normal life. Our world seems to stand still when Curt is telling stories of his past, giving advice or talking about how something around the house works. We are all like vacuums, sucking in his knowledge, his memories, his actions, his smell. This gift of time allows us to mourn in slow motion. Each day we mourn the loss of a physical function, an emotional connection and one less day Curt will be on this earth with us.

In the end, we left the vows alone and our wedding ceremony included the words “For richer or poorer.” We knew all along, no matter the amount of our income, we would always enjoy a rich life together.

Please continue to pray for our family. We are slowing down, enjoying our time together and taking one day at a time. The kids are sticking close to home; we are having more family meals and less activities. Curt is tired and wears out easily. We are thankful for our comfortable home where Curt can rest quietly or sit in the sun or visit a bit with neighbors stopping by. We are thankful for our Moms who help care for Curt during the day, friends that help get him in and out of bed, and more friends that help fix things around the house and all the meals that are brought to us. We could never do it all alone. Thank you, thank you.

Love,

Cindy, Curt, Clarissa, Cayden & Corbin

Corbin's Drama Performance