Better Together

Dear Friends & Family,

Driving in the slow lane, 55 mph max, easy listening music playing on the radio, I sat in the back seat as Curt drove as he has never driven before. Slow, cautious, and gentle. It was March 5, 1993 we were driving Clarissa, our brand new baby, home from the hospital. It was the strangest feeling to be going home with this precious gift of life, no instruction booklet, no nurses, just Curt & I and what we learned from a couple of parenting classes and books. As the days and weeks went by, we noticed most of our time was spent staring at her, studying her features and listening to the sweet sounds a baby makes. Curt’s driving eventually returned to normal when Clarissa was in the car. We still remember that ride home from the hospital and talk about it like it was yesterday.

Six years later, speeding down a two lane highway towards Brawley, California, I sat in the backseat of a truck we borrowed from a stranger. “Can’t you go faster?” I asked Curt. He said, “I am doing 95 mph.” I swear it felt like we were crawling. Cayden was in my arms, tears streaming down his four year old cheeks, moaning in pain, I was squeezing his finger to stop the bleeding and to shield the bare bone from his view. Clarissa was beside him, trying to comfort him and acting so brave for the six year old sister and second mother that she was. It was a freak accident, while playing with rocks in Glamis, which split his finger apart like a squashed banana. As soon as we saw his finger, we knew we had to get him to the hospital 60 miles away quickly. Our motorhome was wedged in with other motorhomes, motorcycles and trailers; it was not an option for an urgent trip. A friend of a friend offered his truck and soon we were on our way. Curt sped into the Hospital’s parking lot on two wheels; he had barely stopped as I jumped out of the truck and ran into the Emergency Room, like a crazy woman, with Cayden bundled in my arms. Something about the look on my face must have got us escorted right into the examination room, bypassing the check-in desk, triage area, and room full of people waiting. In the end, Cayden was fine, his finger was stitched up and I passed out (literally). Passing out would become my new tradition when the kids suffered injuries, especially if it involved emergency rooms, blood, or broken bones. Curt was always there to help us home and through recovery.

Years later, while staying at a campground in Northern California, the kids were having a blast playing soccer in a huge grassy field. Corbin came crying to us that he hurt his foot. He was three years old at the time. Curt & I gave him some love and then decided maybe swimming would make him feel better. We took him to the pool, but he couldn’t swim because it hurt so badly. We spent the next few days trying to divert him from the pain he said was on the top of his foot. When we returned home from our vacation, we settled back into work, errands, and busy family life. Every once in a while Corbin would complain about pain in his foot. Years later his foot was being x-rayed for a different injury. The doctor pointed to the top of Corbin’s foot and said “I see you have broken your foot before, how did that happen?” My heart dropped to the floor and I felt like the worst parent on earth. He had broken his foot back when we were on vacation and we brushed it under the rug and did nothing about it. Curt and I felt so bad that we had ignored Corbin’s symptoms and never had it looked at.

Whether it is the uncertainty of new parenting, worrying about a child in pain or the guilt of not making the right decision, life is better shared. Love conquers all, and to have the one you love, beside you, united with you, laughing or crying, life is better together.

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

A great day for flying......

A great day for a flying lesson! WOW!
It was fun learning to fly an airplane!

Thank you Mike for the lesson, for taking great photos, and for going along for the ride!

Thanks Pilot Jeff, you are a great teacher and amazingly calm!

Corbin, Nathan, Brandon, Jacob, Beau, and Cayden at the
Monster Truck World Finals in Las Vegas this past weekend.

Happy Birthday Mike!
At Ruth's Chris Steakhouse with Jim, Mark, Kelli, Debbie, Larry, Clarissa, and Mike!

Video - Curt Smiling - Then and Now & Corbin's Prayer

Corbin’s Prayer                                                                                                      March 20, 2012

I feel sad like a tornado has wiped out my heart. Like a lion has eaten my soul. Like no one besides my family understands me. And that everyone that I'm not close to just doesn't get the pain that I feel.

Like it says in Acts 22:1-2 "My God my God why have you forsaken me? Why are you so far from saving me, so far from the words of my groaning? O God, I cry out by day, but you do not answer, by night, and I am not silent."  

Please help me, my dad has always been good to you and so has the rest of my family. I know you have the power and make everything happen on purpose. But please Lord help me and my family, at least if not healing, give us strength and courage through this Lord. Look into my heart and memories and see all the love and kindness my family and I share together and see that it will be very difficult without him. Please Lord help him and me and my family.  

Amen

Ramiro has been following Curt's story on the blog. He is a co-worker of our neighbor Larry. On Sunday he ran the LA Marathon with his son Anthony (17), in honor of Curt. He came by yesterday to meet Curt and tell him that he has been an inspiration and a true Hero. Curt was touched so much by Ramiro and his words and the fact that he ran 26.2 miles thinking of Curt. Ramiro had these cool shirts made for Curt and Larry. Thank you Ramiro & Anthony, you are great people!

Terminal Thoughts

Dear Friends & Family,

As the plane backs away from the terminal, my eyes fill with tears. The plane looks like a limousine; black, super shiny with touches of chrome, glistening in the sunshine. Curt is on the plane, he is leaving, after 29 years together I know I will never see him again. Our children stand beside me, dressed in their Sunday best. Clarissa in a simple black dress, high heels with her hair shining more than ever, helped by the reflection off the terminal window. She is quiet and calm, but I know her mind is racing. Recounting the memories of her Dad, the times they have shared, their secret language, their inside jokes. Sealed and gone with the plane. Cayden stands a few steps away, watching the mechanics of the plane and the ground crew, he is dressed in black dress pants, his signature black long sleeved shirt and black shiny shoes. For years I would try to get him to wear dress shoes with dress pants, but he always insisted on wearing black Vans. Today he is wearing Curt's dress shoes, without being asked, he did this to please me, already he is stepping up to man of the house. Corbin is at my side, on the verge of tears. He has been that way for the last 3 years, ready to cry at the drop of a hat. He follows my lead, if I cry, he cries, if I remain strong, he remains strong. Today he is dressed in black, head to toe like his brother. Corbin likes to dress up; he holds his head high and knows he is looking good. I begin to cry. How can this happen to 3 such wonderful children?

The windows on the plane are tinted, almost black; there is no way to see inside. I imagine Curt walking down the aisle, smiling and helping strangers with their bags. Finally he is free to move, released from the shell he has been trapped in for the last few years. I wish I could see him. I want to see him walk, move his arms, talk freely and smile without having to try so hard. I want to share the moment with him, I have forgotten the old Curt. The strong man that never asked for help. The guy who had muscles as a pre-teen and used them to the max. The arms I used to hold as we walked the halls of high school and the leg muscles that made him the wheelie king on his dirt bike and self-taught wake-boarding champ. The shoulders I leaned on in times of indecision and the chest I rested upon. Those images have been clouded by the weariness of taking care of him as he slowly lost his ability to move his body.

I am excited for him. He is going to see so many old friends and have so much catching-up to do. I know the first one to greet him will be his Dad; they haven’t seen each other since December 7, 1995. That’s a long time to be apart from someone you love so much. His Dad was 58, now they are only 12 years apart in age, is that how it works? I have so many questions. Before Curt left, I asked him to come and visit me if he could; I asked him to let me know he is alright. We joked that he wouldn’t mess with me; he can be a bit mischievous you know. I just want to know that he is happy and that he is healthy again. He has suffered for so long.

Enough wondering and daydreaming, I gather the kids and begin walking out of the terminal. We have people to greet and thank. People who have helped us through this ordeal. We will say our thanks and go home and rest. Rest for a few days and then take off to a tropical island. A vacation we have talked about for a long time. Time to rest, time to hang out together and time to remember Curt.

I wrote those words a few weeks ago while sitting in the Dallas-Fort Worth airport terminal. While I waited for my plane I watched couples, families and happy people coming and going. I was a bit tired from my whirlwind 2 day visit with Melissa and family. Seems I had just gotten to Texas and now it was time to go home. I was leaving Melissa, Mike, their 3 sweet girls and the energy of their innocent lives and heading for my home and the hopelessness that surrounds us now. I was feeling sad and the crowds in the airport along with the hustle and bustle were bothering me. I took out my iPhone and the words above filled my head almost faster than I could type them on my tiny keyboard. I was right in the middle of my thoughts when it was time to board the plane. Once we were in the air I pulled out my phone and finished writing the story, when I was done I wanted to find a quiet place to cry. But the plane was filled to capacity and I was trapped beside the window with two passengers to my left. That’s when I met Elizabeth. She was sitting beside me and we began talking. She was very interesting and we were having great conversation. Sometimes you get to talking and reach a point when details just have to be said, I told her my husband had a terminal disease and immediately she knew it was ALS. She knew a lot about the disease and was very encouraging and educated. Time flew by and next thing I knew we were preparing for landing. With her sweet stories, compassion and grace, Elizabeth had pulled me out of my “funk” and suddenly I was ready to go home and face what was ahead. My energy had been renewed. Elizabeth was another one of God’s angels, sent to me at a time of despair, to help me, heal me, and encourage me. Thank you God! And thank you Elizabeth!

There are so many things about this disease and our journey that amaze me. As Curt is growing more tired by the day, so am I. It makes sense that we are both tired; otherwise, I would be wanting to party-it-up while he wanted to rest. Now we are both good with rest. Curt gets tired of sitting in his wheelchair all day so he likes to go to bed early. He will stay up late watching TV, but he is at the mercy of me since he can’t use a remote. I sometimes fall asleep and not wanting to disturb me, he is left to watch whatever may happen to come on. He usually falls asleep around 1:00 am or so each night and sleeps soundly until I have to get him up around 10:00 in order to leave for work. Three days a week his mom comes over and one day a week my mom is there. They have coffee, a late breakfast and then if it is warm outside Curt sits out in the sun. He says he loves the quietness and time to reflect on his life. Traveling in the van has become uncomfortable for him so he doesn’t really want to go places or run errands as in the past. He sacrifices his comfort and takes the 7 mile ride to pick up Corbin from school a few afternoons a week. He loves to be there to greet Corbin!

Curt’s words are probably about 50% discernible. I have to listen intently and then with the few words I understand I can figure out what he is saying. People that are around him often can do the same thing but I always translate his words when people can’t comprehend. He still has so much he wants to say and share. As he is speaking he pauses often to clear his throat and works very hard to pronunciate each word. If we can’t understand him he will try to spell the word, use word association or nod his head as we guess. The other night it took me almost an hour to figure out he was saying the word “deviate”. During the hour long process we took a few breaks and I kept guessing and he kept trying to explain, it was pure torture, but neither of us were willing to just forget it and move on, we had to get that word!

His ability to chew and swallow is also declining. He prefers to eat softer foods; pasta, egg dishes, enchiladas and protein shakes are the easiest for him. He enjoyed a few bites of steak, cut super small, the other night, but said it was more trouble than it was worth. His appetite is small; he usually eats only two meals a day, in part because he is not hungry and part because it takes too much effort to chew. We add thickener to his water to make it easier to swallow and it also helps to keep him from choking. He seems to do fine on his nightly cocktail of tequila or vodka, no choking there! His body continues to get weaker by the day. He can barely help support himself as we are lifting him out of bed or off the portable commode. His arms are lifeless and where ever they lay is where they stay. We have to lift his hand onto the wheelchair joystick in order for him to drive it; he is barely able to move his hand enough to maneuver the chair around. Sometimes in bed he asks to have his arms put on top or under the covers. He needs his legs spread apart while sleeping and gets sore heels from being in the same position all night, so we put a rolled up towel under his ankles to relieve the pressure when needed. Curt’s needs are many and constant.

His spirit is still pretty good. He is not socializing as much and prefers to stick close to home. Although he likes to see his friends, he gets tired quickly. Conversation is hard, sometimes he just likes to listen, other times he has a lot he wants to say. He only has so many words (he can speak without getting tired) and prefers to save them for the special people in his life. He loves the kids more than anything and cherishes his time with each of them. Since his diagnosis, things have never been more difficult emotionally for our family than now. We are all tired, a bit impatient, frustrated and above all sad.

The disease has taken over like a monster we can no longer fight. We have each surrendered and are in a state of limbo as we wait for what happens next. We appreciate the prayers, meals, cards and thoughts as our family is struggling to make the most of our time together. Thank you.

Cindy, Curt, Clarissa, Cayden & Corbin

Corbin's Friday Night Lights Football Game

Clarissa enjoyed celebrating her birthday at Taco Surf with her friends.

Another birthday celebration - a small get together at the house.
 Complete with her favorite birthday dessert -
a giant chocolate chip cookie!

We bought a toyhauler trailer to replace the motorhome.
Cayden can tow it behind his truck and all the motocycles will fit inside. Cayden did all the research, shopping, comparing and negotiating (with Curt nearby). We are so proud of him! He had no problem towing it from the dealership in Norco to home today.

Cayden & Curt were checking it all out and planning how to customize it Ziemke Style!

Weary

Dear God,

Breathe on me, oh Lord. I am cold and weary. I feel so small. I wonder why I am here. What are you teaching me? I am frightened. What's ahead? Why have you chosen Curt, someone who has only helped never harmed? What good will come of taking Curt from his children, from me, from this earth? I feel tremendously alone. Never in my life have I felt so alone. Be with me now. Show me. Tell me why. Breathe on me. Breathe on Curt. Breathe on our children. Take away our pain. Amen.

Love,
Cindy

Happy 19th Birthday Clarissa!
With Chelsea at the Chart House

Celebrating Clarissa's Birthday at the Chart House in Redondo Beach

What's a better way to spend a Saturday evening than eating take out while watching the sunset?
Cousin Alyson, Jeanno, & Ethan (and Dominic, not pictured) came to visit from Rocklin. YAY!

Dinner at Buca Di Beppo

Our friend Suzette & daughter Camilla visiting from Hawaii! Thanks for coming to see us!
And thank you Lorraine for the awesome burritos and rice!

Thank you for your thoughts and prayers for the motorhome.
It sold this weekend. We are sad to see it go, but are happy for the memories we had.
 Photo: July 2006 Curt, my dad, and Cayden in Montana



We missed Clarissa as she spent her Birthday weekend at Lake Havasu, looks like she enjoyed herself though!

Reality

Dear Friends & Family,

After days of walking my feet felt like they were set in concrete boots. Each step I took was painful and slow. I had no idea where I was or where I was going. I was hungry and tired when I came across a sad looking run down burger joint. I schlepped in and plopped down at the nearest table. The dining room had concrete floors; they were clean and shiny yet old and cracked. Painted picnic tables filled the room. There were a few scattered groups of people and they all seemed to stop what they were doing and look at me, no, study me, when I walked in. Dressed in dirty jeans and a zip front hoodie sweatshirt, with shoes, really heavy shoes, or so it seemed. I was carrying only my Nikon camera. My big Nikon with the black and yellow strap around my shoulder. I wanted some food but was too tired to think about what to eat and then I remembered I had no money. I had nothing. My pockets were empty. I had nothing but the clothes on my back and my camera.

As I was pondering how and what to eat, an energetic middle aged blond jumped up from her table and practically ran to me. "Hi, I am Janelle, I have been following your blog, your story is amazing, why are you here, do you need something?" I stared blankly. I couldn't find any words to say to her, I lowered my head, looked at the floor and turned away. Never have I been so rude. I kept my head down and tried to focus. Focus, focus, focus. I must have dozed off because suddenly the juke box began screaming out an AC/DC song. I gathered myself together and headed for the door, on my way out I grabbed a piece of hamburger bun off of a previous customer's table, then turned and said goodbye to Jolene, or was it Janelle or Janet? I didn't know and I didn't care and I didn't know why I didn't care. I always care. Outside I began walking. I was in a small town, maybe in a southern state, flags hung from the light poles and the sidewalks were lined with red, white and blue park benches. “Was it the Fourth of July?” I thought to myself. Hanging baskets overflowing with fresh flowers hung above the worn and uneven sidewalks. I said to myself, “This town is so much cleaner, happier and brighter than me. I wish I could take it all in and truly appreciate my surroundings.” I wish my feet weren't so heavy.

I continued past the last stop light and to the outskirts of town. Keep walking, just keep moving, don't stop. My head was towards the ground most of the time, concentrating all my effort on each step. When I paused to look around I noticed I was in the desert. There were scattered plants, cactus and bushes lining the two lane highway I was trudging along. I lifted my head and noticed the sun. It was setting in the distance, a big orange ball with streaks of pink and orange shooting through the sky. The colors reminded me of a Big Stick Popsicle. I loved to eat those as a child, even as an adult. I realized I haven't had one in a long time and wondered why. Why would I not indulge in such a simple and pleasurable treat? Thinking about the frozen treat made me realize how thirsty I was. As the setting sun was casting long shadows on the ground around me, I realized I was heading west. Finally, a clue to my journey, west, heading west. As dusk settled into night I kept walking, praying my feet would lighten up. With each step they felt heavier and harder to lift. It took all my energy to drag my feet along the dusty trail next to the highway, taking regular steps was no longer an option, my head was still hung low. I paused for a moment to take in my surroundings. Nothing. No lights, no sounds, just cool crisp air, and nothing.

Up in the sky, a little higher than eye level, a bit to the right there was the moon, full, but not too bright. Then a bit to the left another moon. Another moon? I looked right, moon, left, moon, no way. I put my head down rubbed my eyes and looked up again, up higher, another moon on the right, and another moon on the left. Wow! Four moons! Yes four moons, two high and two low. All lined up, like a box. I grabbed my camera and attempted to take a photo of the four moons. They were too far apart to get them all in the frame for one photo. As I was contemplating how I could capture this miracle on film, I took a step forward and tripped. I fell to the ground and landed with my face in the dirt, my camera under my body and my legs resting over whatever it was I tripped on. I felt a large mass moving under my legs, and then there were moans. I've heard the saying "like a bat out of hell" but I never really related to it until now.... like a bat out of hell, I jumped to my feet as quick as a gymnast who falls during a performance. Stepping back, I assessed my surroundings.

Darkness and tired blurry eyes made it difficult to distinguish the large mass. As my eyes scoured my immediate surroundings, I noticed more and more masses. I realized they were people, darkly dressed people, men; they all had bags and belongings next to them. Everything and everyone was strewn about like a plane wreck. There were dozens of them, maybe even hundreds. Everywhere, large masses spread apart like cows in a field. But, we were in the middle of nowhere. Just then it struck me that not a single vehicle had passed along the two way highway the entire time I was walking. Now I was freaking out. Scared, but too tired to run, I stood frozen. Then with the gentle breeze of the wind came a stench. A familiar but disguising smell. Feces. Yes, feces. Human feces. As my eyes continued to focus, I saw piles of human feces everywhere. Big piles dotted the landscape of human masses and their belongings. Suddenly, the mass of a man I had fallen over began to moan and was beginning to move about. The other masses were quiet and still except for their rhythmic breathing that filled the cool night air. With my camera still somehow draped across my shoulder I began quietly tip-toeing backwards. Quiet, I said to myself. Keep it quiet. I back-tracked for a while, crossed the highway, and then continued ahead towards the 4 moons. Walking, trying to figure out what I just encountered. Pondering the 4 moons, the masses, the lonely highway, the small town. Where am I going? Where did I come from? Why am I so tired? When will this journey end? Why are my feet so heavy? Why am I alone?

In the distance I hear music, soft music. Slowly the music fills the dark night, getting louder and louder with each step. The sun is rising behind me, beginning to overtake the darkness and warm my body. The music is comforting. The voice is familiar, oh yes, Kenny Chesney. As the words of the song “Reality” fill the air, I realize it is my alarm clock, I am in bed, at home, and this was all a dream.

Thank you for your love and prayers,

Cindy, Curt, Clarissa, Cayden & Corbin

Corbin's 1st Drama Performance at school

Peggy The Pint Size Pirate, Lauryn played Peggy!

Curt surprised me with a trip to Texas!
I surprised Melissa!

Anna Kate, Rose & Noelle are the sweetest girls ever!
It was so fun hanging out with them!

Since it was a surprise, I was game for whatever the family had planned. A soccer party, volunteering at a consignment sale, store returns and hanging out with their busy family was great fun and a great distraction from my caretaking duties and missing Curt and my family.
It was great to see Melissa in her element with Mike and the kids. I was her sitter in Texas when I was in college and she was four years old.

Rose Mary (Melissa's mom) was in for the weekend and it was great to see her.
This surprise, two-day trip, was surely meant to be. Thank you Curt and The Pond Family for all you did! Sorry, no photos of Mike.

Tony & Dina & Curt all grew up on the same street in Torrance.
So sweet that next door neighbors Tony and Dina married!
Curt had a great time visiting with you and reminiscing about old times!

Curt continues to make the most of each day....and smile!!!