An Excerpt from My Personal Journal

Dear Friends & Family,

This week I am sharing an entry from my personal journal. I wrote this entry after meeting up with an acquaintance who proceeded to tell me how great it is that our family and Curt was given this disease. She said, "If anyone can handle it, Curt and your family can. I know some good will come out of this, everything happens for a reason." I know she was trying to be encouraging but it sent me straight to my journal and this is what came out.

December 14, 2010
Things do not happen for a reason. Things happen because they happen. There is no cause and effect in this situation. God is not looking down saying “today I am going to give Curt this terrible disease and devastate his family.” This did not happen so friends could be closer or people could understand the true meaning of life. It did not happen so others could reevaluate their lives and become better people because of the strong person Curt is. It just happened. We were not “chosen” for this disease because our kids are strong and I can “handle” it and Curt has a good attitude. It just happened. Life happens and we are not always in control. We are all here living our lives and what we choose to do with life and how we react to circumstances is our choice.

“We are here for you.” No you are not. You are not in bed with me while I lie awake thinking of how my children will continue on without a dad. Who will walk Clarissa down the aisle, who will be a mentor to Cayden, who will be the male influence on young Corbin? You are not with me when I am wondering how I will get up in the morning and continue on without my best friend and soul mate. You have no idea how it feels to think of having a future with no one to share it with. Who will I talk to when I get home from work? Who will help me make decisions regarding the kids? Who will inspire, support and take care of me? Who will I laugh with? Who will I cry with? Who will help me through losing Curt?

You have no idea how it feels to think of what’s to come in caring for Curt’s physical needs let alone his emotional needs. Who knows what he’s feeling inside. Knowing you are going to die? I am sure he is afraid. What can I do for him? I can do my best to take care of him physically, but what can I do for him emotionally? I calm my thoughts by knowing that when he dies, his dad and grandfather will be the first to greet him in heaven. It is still scary though. I don’t want him to be scared or lonely in his thoughts. But who wouldn’t be? You can preach all day about how glorious heaven is, but has anyone really been there? Yes, we believe and have faith, but who wants to leave the comfort of this life for the unknown.

You are not watching while his legs shake uncontrollably while trying to take a step into the shower or as he struggles to get out of bed. His hands cramp, his legs cramp and he struggles to speak. How does he have the strength to get up each day knowing the tasks that lie ahead of him? Simple tasks such as opening doors, getting a glass of water or brushing your teeth. And it is only going to get worse for him. Imagine the thought of knowing that you are steadily progressing towards total immobilization. Knowing that in the end you will not be able to move, speak, swallow and finally you will suffocate as your breathing muscles die.

Through all of his struggles he remains upbeat and positive. We have often said “you can choose to laugh or you can choose to cry”. We have chosen to laugh. And laugh we do, on a daily basis; around the kids, around our friends, around strangers. But when no one is around, I cry. Oh yes, I cry. Sometimes I cry for him, sometimes I cry for me, sometimes I cry for the kids, sometimes I cry for the world. I cry for the world because Curt truly made it a better place for all. It didn’t matter who you were or your walk of life, Curt was there, opening doors, smiling, being courteous, setting an example of how people should be. He never did it for the notoriety, he just did it.

Please don’t say things happen for a reason. Please don’t say God chose Curt. Our God is a loving God, and He is hurting as much as we are. Please don’t try to reason why this happened or look for the good in it. There is no good in being stripped of the gift of life. Just give us a hug and say you’re thinking of Curt, me and the kids. Take a moment to enjoy the sunrise (with thoughts of Curt), the sunset (with thoughts of me) or newly blossomed flowers (with thoughts of God). He has created a beautiful world full of magical things. Take a moment and appreciate those things. Appreciate your life and all you have.

We are all having a tough time emotionally this week. The kids are being super attentive to Curt as he needs more and more help. Our hearts are heavy. We have spent many nights all snuggled together with Curt at bedtime, just talking. I pray his voice stays, I can't imagine him not being able to talk.

Cindy, Curt, Clarissa, Cayden and Corbin


Melissa said...

This is awesome! I totally agree! God did not in any way cause this to happen. The word "reason" is linked to causation. So when the word reason is used, by definition, one is saying something was caused by something or someone. You are right on! I hope people become less naive of nuances reading this post and think before they speak to people going through disaster. Love all of you very much!

Tina Harding said...

Cindy, I read every post to Sam, some make me laugh, some cry, but I apprecitate the time you take to update everyone on how things are going. You have a great way of telling your family story and it makes me appreciate life.


Gallie said...

Hi Cindy and Curt,

Interesting enough, even after reading your very touching update I find myself one of those people who still believe that things happen for a reason. I feel it deep inside, but your update made me think more about what that means to me.

I think the person who told you "things happen for a reason", or that God has "chosen" Curt to get ALS for some unknown purpose, probably meant well by saying those things. I believe they mistakenly offered irrelevant theological truth at a time when a compassionate heart was needed.

Imagine Mary, the mother of Jesus, being told that her son's beating and crucifixion were "God's plan" as she watched in emotional pain and agony the horrific events that unfolded before her eyes. For me, one of the most moving moments of "The Passion" was when Mary and Mary Magdalene bent down to wipe up the blood after Jesus' horrible scourging. Mary Magdalene didn't interrupt Mary, or tell her how this was God's plan, or offer her some scripture passage...she bent down beside Mary and comforted her in the best and only way she could...she helped wipe up her son's blood.

I do believe that things happen for a reason, that God is never thwarted, and that events never spiral out of control without His caring and loving hand to comfort us through the process. The problem is that none of us are privy to how all that works. We can utter those words in pride thinking we've grasped a profound theological truth when the reality is that none of us has a clue. Pain, illness, and death are all un-natural and not part of God's original plan for us. We should be saddened and angered to see the devastation they bring. To know that God is in control of even those disturbing parts of life can bring comfort in some circumstances...but when something like ALS inflicts a wonderful family like yours the truth of God being in control becomes moot.

I believe the problem with what that lady said to you is not whether it was true or not, but whether that truth belonged in a conversation with someone whose husband is struggling with ALS. It is not the time, nor the place, for those kinds of trite phrases. It is the time for compassion, love, friendship, caring, and a coming along side of all of you to lend support in any way possible...even if that means we be like Mary Magdalene and bend down to help wipe up the blood.

We are here for you for whatever.

We love you guys!

Steve for the Gallies

Barbie said...

IT HAPPENS FOR A REASON???? No I don't think so, Cindy! Can someone, ANY ONE, give me ONE good reason why this has happened to Curt?

Come on, POST IT.....just one good reason why this kind, gentle, loving man would be given this terrible terminal disease?

Cindy, we don't have a clue as to what the 5 of you suffer through each minute of everyday. We don't have a clue what dark thoughts cloud your every waking moment. We can only imagine and I, myself, struggle with it. I'm mad, confused and so saddened by it and it makes me sick. Why do child molesters and murderers live on while Curt struggles to take on one small task and death looms over his head? I don't get it and it has shaken my faith.

The way I see it, you guys have taken this disease on the best way you know how. So you just DO, you DO what you need to DO. There's NOTHING good about this. There IS NO GOOD REASON.

And HANDLING IT ...... What's your choice here? Walking away? You've taken this on with dignity and grace, with love, understanding and pure determination. You DO IT because you HAVE to and you would do anything for the LOVE OF YOUR LIFE.

We, who love you, hold your hand, some of us from afar, but we don't really know how devastating your day will be. We think of you and worry. We all do our best to keep you uplifted because we know with each sunrise you're faced with, still, another challenge.

Melissa said...

To say everything happens for a reason, LITERALLY means God CAUSES all things to happen. God did not cause this to happen, therefore it did not happen for a reason.

"There are many, many intelligent people who firmly believe that God does in fact cause all things to happen in today's world, even tragic situations. And they haven't come to this conclusion flippantly. However, that is not my belief. I believe tragedy, chaos, and disease are natural consequences of the Fall when humankind was given freedom of choice. Yet, no matter who you are or where your theology stands, all people who strive to thoughtfully deal with God and life are forced to live within the tension of God's goodness and a chaotic world." Words by Kyle Lake, Understanding God's Will

Anonymous said...

Cindy Lee,

I will always be there for you! Your honesty is real and touches my innermost heart. I will, to the best of my ability, try to answer some of your very difficult questions and bring you, Curt, Clarissa, Cayden, & Corbin all the support and love I have. You are wonderful and thanks for loving my brother so much.

Gallie said...

Hi Cindy, Melissa, and Barbie:

Cindy...thank you again for sharing from your journal, and your heart. I know it has touched many of us, and has sparked this discussion. I think we are all wrestling with what all this means.

Melissa and Barbie...I like what you’ve said and have a few more thoughts to share. I think that “cause” and “reason” are connected ideas, but distinct.

“CAUSE” - The causes of God are mostly a mystery to us. We have limited insight as to how and when God causes things to happen. In fact, the very word “cause” can mean many different things and this whole topic is one that has been discussed for’s free will vs. God’s providence, predestination and so on and so forth. We are not alone in being unsettled by how it all works. There is, though, one story that sheds some light as to how God views illness and death. When Jesus comes upon the death of Lazarus, we discover a very interesting response. Before Jesus raises him from the dead, He takes the time to feel the proper emotion of being sad and to shed tears as a result. This tells me that death and illness are not a part of God’s plan for His children and that however God’s sovereignty works out through time and space, He does not derive joy from our sorrows. I believe He desires us to be whole beings...emotionally, spiritually, and physically.

“REASON” - The reasons behind events is where the dance takes place. I call it a dance because this is the part that involves not just God, but each of us. We dance with the Creator trying to find meaning and purpose in the events of life. It is this part where we engage with God in figuring out what we are to do about our current situation. We do not enter the dance floor alone, but lock arm-in-arm with the One who will guide our steps and bring something meaningful and beautiful out of our stumbling feet. God does not “cause” our tragedies but He is there to help us find a “reason” in them.

What do you think?

With Love,


Melissa said...

Now I know that we all agree that God did not cause this to happen therefore, the word "reason" is what we are having a discrepancy with.

   /ˈrizən/ Show Spelled[ree-zuhn] Show IPA
1. a basis or cause, as for some belief, action, fact, event, etc.: the reason for declaring war.

Reason, literally by definition, means CAUSE, therefore we cannot use that word since we've all stated God did not cause this tragedy. It would be better to say (Steve's words): God does not cause our tragedies but He is there to help us find (instead of reason) hope, love, etc in them.

Your paragraphs talking of Jesus and his love and our dance with him are beautiful, and I fully agree with your words, excluding our interpretation of the word "reason," which to me, is pretty black and white by definition. I don't understand what your hang up is with not using that word, considering how clearly linked to causation it is by mere definition.

Your love for God and the Ziemkes is evident, and I admire that.

Barbie said...

Very brilliantly said, Melissa......I couldn't have said it any better. You made OUR point eloquently and tastefully. You have a standing ovation from me!!!

Thank You!