Trust (Continued)

Dear Family & Friends,

There was so much more I wanted to say last week, but the words just weren’t flowing. I wanted to say that trusting in God, your spouse and your decisions makes life smooth. I have total trust in Curt; he has never done anything to cause me to question him otherwise. Mutual trust means we have no jealousy issues. He has never lied to me about anything, he makes trusting easy.

The hard part is trusting a situation that is out of your control. I have no control over Curt’s disease. I have no idea why this is happening to our family. I have no idea how we will get through each day, let alone how we will get through life without Curt. I tell myself over and over, “You can’t worry about what you can’t control” and “Everything works together for those who love God” and so on. Sometimes these affirmations are not enough.

Weeks had passed as my heart raced inside my chest, stronger and faster with each day. My heart was racing day and night. Beating so fast I couldn’t sleep. I couldn’t eat. I couldn’t control my moods. One minute happy the next raging out of control. My gums were full of blisters, painful and raw. Four nights in a row I slept less than 3 hours per night. I was a mess; physically and emotionally. But no one knew any of that, not even Curt or the kids (apart from the mood swings). I carried on as normal; work, home, Blog, friends, I just didn’t talk about it.

On Monday morning, April 2, 2012, I called the doctor’s office with my symptoms and I was told to go straight to the emergency room. I waited for Barbara to arrive to take care of Curt and left “for work” as usual. Headed to the hospital down the 605 freeway my chest began hurting and tightening, then came the shortness of breath. I thought I was going to die right there on the 605. I had to hold on, I thought, I can’t die where the kids have to pass everyday. I wondered if I should have told Curt my symptoms. I called a friend and gave a quick update, just in case something should happen to me.

At the hospital I was admitted quickly, given some medication to calm my anxiety, a chest x-ray, EKG, blood work and an emergency psych evaluation. I was overwhelmed from days of no rest and constant anxiety. The doctors (medical and psych) were instantly engaged and concerned hearing about the impending loss of my 46 year old husband. They were surprised that I had lasted this long without an anxiety attack and called me a hero. They said my love for my husband and family was apparent. They promised to not only get me through the day but through this ordeal assuring me the road ahead will get harder as Curt continues to decline. Everything checked out fine and after a heavy dose of Ativan (for anxiety) and a prescription for antidepressants, I called my friend Carolyn to pick me up. She took me to her house to sleep for a few hours, then back to my car at the hospital and I was home by 5:00 just like a normal work day. I later confessed it all to Curt who made me promise to tell him how I am feeling no matter the circumstances.

So back to last week’s post and how I said that people compliment me all the time on how well I am handling our situation. I want people to know that it isn’t easy. Curt and I have chosen to concentrate on the bright side, the sunny days, our wonderful children and time with friends. We somehow trust that this is all going to work out. We talk about emotions and what’s to come, but it’s not easy. Most of our feelings are held in, pushed down and ignored, until they come out through anxiety, gum blisters and sleeplessness. It has been eight weeks since that emergency room visit. My symptoms are getting better each day although my heart continues to race. The war inside me will continue on as my emotions, mind, heart and spirit battle. I will continue to recite my affirmations. I will continue to concentrate on making each day the best it can be for Curt and our children. I will trust that God will somehow work this out.

This post is dedicated to all the ALS spouses whom I have been privileged to meet through this blog and the ones who follow silently. I hope it helps to know you are not alone and that this journey is not easy. And I am not as strong as I may seem.

Cindy, Curt, Clarissa, Cayden & Corbin
Memorial Day Weekend

Dad & Mom & Clarissa & Cayden & friends at Lake Nacimiento

Danielle, Courtney, Emily, Corey, Clarissa and Paige

Shane, Zach, Cayden, Jacob, Alan & Corey

Corbin had a busy weekend at home with friends!
Landon, Jay, Trevor & Corbin

Hanging out on Sunday with the guys!

What a great day!

and the girls!
and the kids!

Jacuzzi Time!

These guys are so gentle!

Curt loved it!

We all loved it!


Dear Friends & Family,

Imagine a relationship without jealousy, a life without fear and decisions that are not doubted. Trust in your spouse trumps jealousy, trust in yourself trumps fear and trust in your decisions trumps doubts. Knowing from the bottom of your heart that God is in control, allows complete trust that everything is meant to be. When you have complete trust, you have a peaceful life.

People compliment me all the time on how well I am handling our situation. Although it may look like that on the outside; inside it is a constant war. My mind, my heart, my emotions and my spirit battle. On one hand I know I need to trust that God has a plan for our family and this will somehow all work out. On the other hand, I am scared of facing a future without Curt. I tell myself over and over to just trust, believe and have faith. Sometimes it’s hard.

Cindy, Curt, Clarissa, Cayden & Corbin

It's always fun when Mark & Kelli & Mike visit!

Happy Graduation Jessica!
Cal Sate Fullerton

Cayden & Paige ready for Prom

Clarissa spent the weekend at The Colorado River with Grandpa & Grandma & Lindsey!
Happy Birthday Dad!

Happy Birthday Dad (again)!
at the office today!

The employees at American City Pest have been so supportive of Curt. Many dropping by to visit, sending notes or emails of encouragement. Just wanted to recognize all the special employees we have and how thankful we are for them.
Photo taken: October 2010

Our Children

Dear Friends & Family,

From their first smile, to their first steps, to their first words; watching children grow is a rewarding experience.  It goes on to their first day of school, sports, music, art and then jobs and college. Guiding them as they grow and make decisions is scary yet rewarding. It is especially great when they make good decisions and choices. The hardest part is standing back as they grow and giving them room to make mistakes and learn from their decisions.  We are super proud of our kids! With the journey we are on, they could have chosen to "check out" of their schooling, sports, jobs, etc.  Instead they have continued to do their best at everything and have rarely pulled the "my Dad is dying" card.

This past Sunday was Mother's Day. Clarissa wrote me the following letter:

I sat down multiple times to write you a Mother's Day note/card, do I put into words everything you are? I read the blog each week and wonder how you put everything into words and make it sound almost pretty. There are not enough words to describe you! How can you be so loving, giving, caring, selfless, helpful, patient, down to earth, happy, funny all at once through all of this? Someone needs to write a book about you so more people can learn to be more like you. You are such an example to me and everyone who knows you.

I know we put you through the ringer sometimes (me & the boys), thank you for letting us show you we can be trusted and for trusting us even after we have made mistakes. I am so thankful for everything you do for us and all the privileges we have. I am so incredibly lucky to have a Mother as awesome as you! I love you so much, no matter what, always & forever. 
Love, Clarissa (19)

Not only does Clarissa write amazingly, she is super intuitive and smart. She is my "go to" person about feelings and dilemmas. She knows how to get things done and works best when she is busy. I rely on her more than I should at times, but she always comes through for me. She is an angel that knows where and when to have fun and her smile brightens our days!

On Mother's Day, Cayden (17) was up in time to help get Curt out of bed and ready for church. He situated him in his wheelchair for the drive to church. He is always ready and willing to "manhandle" Curt to make him more comfortable. He drives our family like a pro and lets people know Curt's needs. Whether it is a Doctor, nurse, waitress or friend, Cayden always speaks up for Curt. He fixes things around the house and always lends a hand where needed. He is stronger than most his age and can figure out anything electronic, mechanical or technical. He is Curt, through and through. His passion for getting things done, his ability to speak to anyone and his heart for those he loves makes us so proud.

Although he is only 12, Corbin is wise beyond his years. He has figured out every angle in life. He knows compliments will get him places, studying will ease his schoolwork and a little bit of effort will go a long way. Like his brother, he has the gift of communication; he can talk to anyone. He orders flowers, pizza, fruit arrangements to be delivered complete with my credit card number. He can find a store clerk to locate items and order products over the Internet with no help. He is thoughtful and considerate, especially for those who need it most. His heart is pure. We are so proud of him and all he brings to our family.

Curt and I have always been proud of our kids. We think they are each special in their own way and couldn't imagine life without them. Their true character shows, now, in this most awful time of our lives. They are strong, compassionate, loving and patient. They are amazing children and we are so blessed!

Cindy, Curt, Clarissa, Cayden & Corbin

Corbin was so excited to buy a 5LB Hershey Bar for Landon (and Delaney) in Hershey.
He couldn't wait to deliver it to his best friend!
The Schultze Family - Kenny, Cheryl, Haley, Kelsey, Landon and Delaney have made Corbin so welcome in their family. He loves visiting their house and they make him feel a part of their family We are thankful Corbin has a place to go where he can have a sense of normalcy with an awesome loving family! Thank you Schultzes!

Mark, Jim, Curt (Larry, Debbie, Kelli, Jessica-not pictured) Friday night dinner, thanks!

My mom & I went to lunch and got pedi's Saturday for Mother's Day!
Have I mentioned that I have the best Mother on earth? Love you Mom!

Curt & his Mom at lunch on Saturday.
He loves his Mom with all his heart!

Mark taught Corbin how to mow a lawn! Awesome!

It takes a lot of effort to get up and out the door in time for church. Curt and I have really been wanting to go lately....we finally made it this Sunday as a family. We were rewarded with a great message (as usual) and my favorite guest singer James Brown!

First Baptist Church of Lakewood on Mother's Day

Mother's Day garage cleaning time! Yay! I love a clean garage!
We also washed 4 cars and did 3 loads of laundry! All in less than 3 hours. What a great family!

Saturday night a commercial came on TV for Frosted Mini Wheats. I mentioned to Corbin that its been awhile since we have had those and they sounded good.
The next day he went for a bike ride (to Target) and came home with Mini Wheats and a card.
 He said he wanted to make Mother's Day extra special!

Monday Night at Ferraro's Italian Restaurant for my Dad's Birthday.
Happy Birthday Dad!

A Place For Heroes

Dear Friends & Family,

I am sitting on a hill overlooking Arlington National Cemetery in Washington DC where there are 240,000 service members buried. People who were courageous and brave in life then buried here in honor after their death. As Corbin and I continue to tour Washington DC, we visit many monuments and memorials. The Vietnam Memorial honors 58,000 veterans who lost their lives during the war. The World War II Memorial honors 16 million Americans who served and 400,000 who died in the War. The National Law Enforcement Officers Memorial honors 17,000 officers who were killed in the line of duty. The Air Force Memorial honors millions of men and women who have served our country. Washington DC is filled with memorials, monuments, museums and buildings honoring heroes. It was an honor to visit these sites and remember the people who served and/or died for our country.

While touring the city, I often wondered, shouldn't there be a place for the regular guys to be honored after death? A place for the men who are great fathers, great employees, great sons; the heroes among us. These are the people that make life worth living too, they smile when you are down and lend a hand when you need help. I picture a memorial site high on a hill so people could continue to look up to them. It would be open to men, women, and children; anyone who has touched the life of another would be honored. The memorial would be filled with stories of friendship and inspiration and surrounded by the greenest grass with trees shading the sometimes intense sun. It would be peaceful; no airplanes flying over or trains roaring by. Families would sit together or play together, peace and harmony would abound throughout all the visitors as they shared stories of the “everyday heroes.”  This memorial is simply a thought of mine and may never come to be; meanwhile I will continue to honor my everyday heroes by thanking them personally, now, while they are here with us on earth. As you all know, Curt is my #1 hero, always has been and will forever be.

Being away from Curt last week was really tough. I missed him so much and knowing that the time we have left together is limited, made it even tougher. But the trip renewed my energy, allowed me to spend precious one on one time with Corbin and gave me a chance to really miss Curt. My thoughts were on him constantly and as they say “absence makes the heart grow fonder” (if that is possible). I was surrounded by wonderful caring friends on the trip as Curt was at home. I will never forget the places, people and memories of Washington DC with Corbin and his 6th grade class, nor will I forget the feeling of being away from my everyday hero; the guy who lights up my life each day.

Curt's health continues to steadily decline. He is in bed more than he is up. His appetite is pretty non-existent and he is limited to soft foods, pureed foods and soup. He has no strength in his legs and can barely move his hand to drive his wheelchair. His speech is barely intelligible in the morning, when he is tired and if he has had a drink or two. Although we try to listen carefully, we often have to ask him to repeat himself. He rarely wants to leave the house, if he does, a quick lunch out or errand will send him home to nap for a few hours. Still, his attitude is positive. He is cheerful most of the time and continues to be a great father and husband. The kids are doing fine. They are great to help wherever and whenever needed. They bring joy to Curt and provide life and energy to our home. We are so proud that they have continued to be great students and keep active social schedules. As a family, we are cherishing our time together more than ever. We also cherish our friends and prayer warriors. Thank you for supporting our family. And thank you Steve Gallie for writing the blog last week, you are very inspiring and your compliments were so nice, we apprecaite all you do for our family.

Cindy, Curt, Clarissa, Cayden & Corbin

Secretary's Day - Thanks for working so hard for us, you guys are the best!

Cayden asked Paige to Prom with a big homemade sign and flowers. She said "Yes!"

While we were in DC Curt spent a few days in The Hospice Home. He said it was a nice break from home and he was well taken care of.
 Jim, Colleen, Chloe and Paige visited him and brought a nice dinner (and a nightcap)!

Kelli, Larry, Debbie and Mark visited Curt for Sunday Fun Day at The Hospice House.
Dinner and drinks (what's in those red cups)?

The guys stopped by when Curt got home. Larry, Bill, Bill, Cayden & Ray
Is Curt's smile awesome or what?

Before meeting up with Corbin's 6th grade class we spent a day in Hershey, Pennsylvania with Carolyn and Lauryn. We toured Hershey's Chocolate World!

Corbin, Lauryn, Lucy & Ethel got to make custom candy bars!

Touring the Amish Country. We visited the cities of Intercourse and Bird In Hand.

Every house had massive clothes lines!

Corbin's Classmates at the Lincoln Memorial

Although the schedule was packed with touring in DC, Corbin & I had a lot
of tender moments, he really opened up and shared his feelings about Curt.
It was great to have quality time with him in the midst of the trip.

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 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.


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