Dear Friends & Family,
Due to the unrest in Mexico we have decided to fly to Monterrey. We will leave Sunday evening and fly to Dallas where we will spend the night with our great friends Mike & Melissa! We will leave Monday morning for Monterrey and arrive at 11:00 am. We will stay in Mexico for 2 nights at The Presidente Intercontinental Hotel and return home Wednesday night. Curt & I are more relaxed about the trip and the fact that we will only be away from the kids for 3 nights. I know this trip was meant to be and the treatment is going to help Curt. All the travel arrangements just fell into place today even though it was last minute. Thank you Sandy Klein for the frequent flyer miles for Curt & me, you are amazing and so generous!!!!
We received an email on Monday that Curt was turned down for the research study in Monterrey, our first choice, which was supported by our doctor. It is good to know that that treatment is no longer an option. This treatment Curt will receive is our only hope and obviously meant to be. Please pray for Dr. Francisco Ramirez who will be treating Curt while we are there. Please pray on Wednesday for the Stem Cells to enter his body and begin healing right away.
Thank you for praying for us and our family. Please pray for Curt to be able to rest and relax on the flight (flying is not his favorite thing). Please pray for Ray & Margie Arevalo who are taking vacation time and leaving their daughter with family in order to travel with us. Thank you Ray & Margie for all the information today and for being so flexible with the travel plans. We are so blessed with such great friends!
Cindy & Curt
Dear Friends & Family,
Here is a special update from Corbin and how he is dealing with his dad's illness:
In November of 2009, when my mom told me my dad was sick, at the dinner table one night, I fell to my knees and then ran to my bed and cried for hours. Each of my family members came and joined me on my huge bed, one at a time. Then I went to the living room and joined my brother and sister who were on the couch hugging my dad. I decided to join them too. Trying to find space like a pig to his mother to get milk, I finally got in close to my dad. Later I cheered all of us up with a joyful gesture. In order to distract myself from the sadness, I got my photo album out and sat with my dad looking through it. My dad was beside me in so many pictures; it reminded me of how close he has been to me all these years. I needed another distraction so I turned on Sponge Bob Square Pants.
Later that week when my dad came in my room to tuck me in and lay down with me in bed, he held me and I felt his chest. He didn't feel as strong to me as usual. I had known for awhile that his hands were weak and beating, but I thought it was just his heart beating in his hands. But now I felt his arms were shaking and I knew for sure there was a problem.
On Christmas morning I looked at my dad's face and a feeling of sadness went through my body. Then I thought to myself, just keep a straight and plain face and I won't feel bad, or be sad, or cry, and no else will feel bad either.
The best thing about my dad is that he has loved me and taught me everything I know for 10 years and I am still learning. I love to follow him on his motorcycle on trails through the desert during our weekend trips. My other favorite thing is sitting on my dad's lap and driving our boat. He has taught me so well that now I can drive it with him sitting next to me. This weekend he taught me to drive his big 2005 Chevy Truck. I drove through the desert while he sat beside me. Don't tell anyone, but he let me drive on an empty highway.
When I come face to face with a close friend, close parent, family member, or a teacher, I try my hardest to resist thinking about my dad because I know that I will break down and cry. Even though I know that crying is good for me, I just don't want to cry in front of people. When I am at home, playing video games or riding my motorcycle in the desert I don't think about it, I just focus on what I am doing.
I don't want to think about the future. I just pray every day that my dad will get better.
Corbin Mitchell Ziemke
10 years old
Dear Family and Friends,
As I mentioned in my last update, we were considering a trip to Mexico to seek experimental treatment for Curt. After much prayer and discussion, we have decided to make the journey. Our good friends, Ray & Margie Arevalo, made arrangements with the doctor in Monterrey, Mexico, and they will be traveling with us. We are leaving Saturday, March 27, in the morning and will drive straight through (1550 miles) until we reach our destination. We meet the doctor on Monday and Curt will undergo blood work. We hope Curt will receive the treatment by Wednesday. We will journey back home after the treatment and hope to return by Thursday night.
We need more prayer than ever before.
We need everyone to pray for our safe journey.
We need everyone to pray for Curt (as usual) and for the results we seek through this treatment.
We need everyone to pray for our children who will be anxiously waiting at home.
We need everyone to pray for my parents who will be staying with our children.
We need everyone to pray for our hearts to be peaceful with this decision.
Our prayers are so enormous that we have decided to take it a step further. In an attempt to be closer to our Lord, we plan to hold a group prayer gathering. Torrance Beach at Sunset is one of our favorite places to be. We consider it one of God's best creations. So on Friday, March 26, we would like to invite you to join us before sunset (6:30 p.m.) on the beach in Torrance to pray for Curt and our journey.
Park in the large parking lot at the South end of Esplanade, near 300 Paseo De La Playa. Meet on the beach at 6:30. Dress warm!
Immediately following our prayer session, my parents, Jim & Celia Shockey, will host dinner and a send off party at their house. 5413 Towers St. Torrance, CA 90503. (310) 542-3669. Please bring your own drinks.
Hope to see you on the 26th. If you are unable to join us, please pray for us as often as possible.
We love you all,
Cindy & Curt, Clarissa, Cayden & Corbin Ziemke
PS: Check your email tomorrow night for a special update from Corbin!
Dear Friends & Family,
Have you ever noticed that everything is brighter on a cloudy day? When the sky is gray and overcast, colors become more vivid because they are not competing with the sun. At our house, the grass becomes a deep velvet green and the flowers in the yard "pop" with their brilliant colors. The other day I was wearing a bright pink shirt on a cloudy day. I caught my reflection in a storefront window and it looked like I was glowing. I love colors; bright, cheery, and vibrant. I love cloudy days; there are no shadows or glares.
Our life right now is kind of like a cloudy day. We are going through our normal activities and routines, but everything is a little brighter. The image of each activity is more focused. Each moment with Curt is sharper, clearer and more vivid. On Saturday, Curt made a comment in passing that I took the wrong way. I spent most of the day hurt and stewing about it. Later that night we talked and it was just a misunderstanding. This disease has caused us both to be more sensitive (which we have never been). Each word, each moment, each action is brighter and bigger. I am sad that I spent a day upset at Curt. What a waste of our limited time together. We were at the desert for the weekend with a great group of friends. We spent Saturday night sitting around the campfire visiting with friends and then laughing for over an hour straight (thanks for the entertainment Dan-o). We laughed so hard we woke up Sunday with sore abs. Being sore from laughing is a great feeling and just what we needed.
We clearly know how we want to spend these days. Nothing big, nothing monumental, just our regular life with more focus. More focus on each other, on feelings, on enjoying the beauty of this earth. I thank God everyday for having such a full and wonderful life. A great husband, great kids, great work, great friends and great family. What more could anyone ask for?
Cindy, Curt, Clarissa, Cayden & Corbin
PS: We are seriously thinking about going to Mexico ASAP for a stem cell treatment. Curt's doctor does not support this particular treatment. His physical symptoms are getting worse by the day. We feel we have to try all options at this point. Please pray with us for the right decision to be laid on our hearts.
Dear Friends & Family,
I knew "of" him, before I ever met him. I attended Towers Elementary School in Torrance and he attended Carl Steele Elementary just across Anza Ave, less than a mile from my school. I don't remember how or why I knew his name, but he must have been something special for us kids at Towers to care about anyone outside our great school.
I finally met Curt Ziemke face to face in sixth grade. Our two elementary schools fed into Bert M. Lynn Middle School. We both had Mr. Matz for sixth grade homeroom. Yeah, he was cool, but a little too cool, if you know what I mean. I was kind of shy and he was not. He had lots of friends and it seemed all the girls liked him. I remember his strong build and dark hair. My friend Chris McDonald was infatuated with him from 6th grade through High School; I respected that, and concentrated my feelings on Curt's friend Steve Sherrill. Curt and Steve hung out on the bleachers with a group of guys every day at lunch and recess. My girlfriends and I called them "The Monkeys" because they were always hanging around the bleachers. Of course, my friends & I spent a lot of time hanging around the bleachers also. Our school would have after school dances and I remember dancing with Curt a few times. I also remember skating the couples skate with Curt at Shamrock Skating Rink during school events. Boy could he skate. Backwards, forwards, spinning, he was definitely the coolest guy out there.
Like I said, my friend Chris had "dibs" on Curt. So although we hung out a bunch, he was pretty much off limits for me. That was ok, because I always liked Steve. But, there came a night in August of 1982, it was actually August 4th to be exact. We were both 16 and it was a warm summer night before our Junior Year. There was a party at Bob Young's house. He lived down the street from me, was quite a bit older, but asked me to this party. It turned out that Curt was at the party also. Curt sat beside me as we played quarters at the dining room table. There were quite a few people there and the room was high energy, loud and lively. Curt rested his hand on my knee under the table. He continued touching my knee throughout the night. I began to feel like we were the only two people in the room.
Something was needed from the grocery store so Curt & I volunteered to go. We rode together in Curt's 1967 Volkswagen Bus. It was yellow and white. The front seat was a bench seat. It was weird to be in a vehicle that had no hood. I remember pulling up in front of Alpha Beta and feeling like we were going to hit the yellow pole. We got what was needed and went back to Bob's and stuck together the rest of the night. At the end of the night we walked out to our cars and had our first kiss. While we were kissing, friends from the party were picking oranges off of Bob's fruit tree and throwing them at us. I remember the full moon, warm air and Curt's strong and confident kiss. I went home totally in love and smelling like oranges.....
.....to be continued (the story of Curt & Cindy, Chapter I)
Please pray for our family. Curt's symptoms seem to be worsening quickly the last few weeks. Sometimes he really struggles with his speech; the words just don't come out quick enough. His brain is fine but the words won't come. His legs are not working well. He sometimes struggles to walk, while other times he walks normally. There seems to be no reason or predictability to why his body is fine one minute and not functioning properly the next. He struggles to get dressed. Buttons, zippers and shoelaces test his patience each day. Even though he has not really worked since last May, he officially went on permanent disability this week. He turned in his uniforms and company property after 25 years at American City Pest & Termite. Please pray for him.
Corbin has been struggling the last few weeks at school. He is not doing his work in class, he chooses to daydream instead. Our evenings are spent doing hours of homework together each night. This is wearing me out. I try my best to be understanding and patient but I am so exhausted, it takes all my energy to sit with him and encourage him. I am hoping this is just a phase and will end soon. Please pray for Corbin (and for me).
Clarissa celebrated her 17th Birthday this weekend with her friends at our house. She has had a lot of homework lately, but is doing great at school. She is keeping busy with volleyball and played great in a tournament on Sunday!
Cayden had friends over most of the weekend. They rode bikes, went to the movies and spent the night here. He is keeping busy with high school volleyball. He had a game today and played really well. Curt & I really enjoy watching Clarissa and Cayden play volleyball.
Curt & I are taking one day at a time. Trying to not think too much about the future. Waiting to hear about treatments (I have been calling, but no answers yet). We had our family portraits taken this weekend (thank you Cindy & Dana). We finished our taxes. We are meeting with an attorney next week for our Trust. Curt is busy organizing his tools and garage cabinets for us. We spent today together. What a beautiful, crisp, clear day. As we were driving in Huntington Beach we could look from the ocean to the snow covered mountains. They looked close enough to walk to. We are so lucky to live in this beautiful area! We drove around Palos Verdes and stopped to look at Catalina Island and reminisce about childhood experiences. As we sat in the car looking out over the ocean, the sun warmed our faces through the windshield. It was great to just be together! I am the luckiest woman in the world!
Thanks for being our friends, for supporting us and most of all for praying. We need that miracle really soon!
Love to all,
Cindy, Curt, Clarissa, Cayden & Corbin
Dear Family & Friends,
We stood in the kitchen, Beverly (Curt's sister), her son Jonathon and Barbara (Curt's mom), opening our fortune cookies one at a time. It was about 10:00 pm, Curt would be returning home with the boys from the Monster Truck Races at any minute. Beverly, Barbara & Jonathon needed to be gone before they got home.
Earlier that afternoon, I had pulled out Curt's boxes of childhood photos and memorabilia with the intent to organize it all and start a scrapbook of his childhood memories. My plan was to work on it all afternoon and evening while he was gone with the boys. As I was unpacking I realized this was going to be a really big job, too much to handle alone. I felt overwhelmed and didn't know where to begin. I called Beverly and Barbara and they raced right over to help. We worked for hours and hours, sorting through photos, award certificates, artwork and school projects. We spent time reading his work, sharing what we each found, laughing at silly photos and crying a little. We had chinese food delivered for dinner so we could continue working into the evening. The hour came when Curt was to return so we quickly cleaned up, packed everything away, and left no trace of our endeavors.
On their way out we realized we had not eaten our fortune cookies. We each opened our cookies one by one. I was last. I broke open my cookie and read my fortune, "He who has hope, has everything." I immediately began crying uncontrollably.
You see, hope is one of my biggest struggles. One minute I have so much hope, there are possible treatments in Mexico, Curt is having a good day physically, or we hear of someone who had had ALS for 10 years, this gives me hope and strength. The next minute, Curt trips or stumbles, I feel his muscles twitch as I rest my arm next to his, or someone speaks of something off in the future, then I lose all hope. Hope is not something I can dwell on. I have to spend my time living each moment, not hoping for something that is out of my control.
After crying in Beverly's arms for awhile, I realized "hope" is just another word. Whether I have hope or not will not change the situation we are in. More important than hope is love. We definitely have that......every minute of every day. Love never fails, love never changes, love never waivers. Our family has love and no one or nothing on this earth can take that away!
Cindy, Curt, Clarissa, Cayden & Corbin