Curt's Words

Dear Friends & Family,

I have been careful in my weekly updates not to speak what Curt or the kids are feeling. It is not my place to share their innermost feelings unless they ask me to or give me permission. This week, I wanted you to hear straight from Curt. He is pretty private and not one to talk about himself. I asked him if I could interview him for tonight’s update and he agreed.

When you were diagnosed with ALS what went through your head?

I thought of not being able to finish raising my kids and not growing old with Cindy.

Were you angry?

I have gotten mad a few times. I have not ever said “why me”. I felt there was a reason for this and believe that someday something good will come out of this.

What’s the hardest thing about being physically disabled?

Everything; it is frustrating not being able to do regular day to day tasks around the house or with the kids.

Is there a good side to this disease?

It really shows me how much people care. Not only my closest friends but also people I barely knew before the disease now reach out to me and show me such compassion.

Do you have any regrets in life?

No, not any. I am glad we enjoyed life and lived each day to the fullest. We never put off doing things or going places as a family.

Do you have any advice for us?

Enjoy every day. Each day is a new opportunity to do the right thing, to put others first and to tell family & friends how much you love them.

Any last words?

Through all this I still feel like the luckiest guy I know. I have a beautiful, loving wife, wonderful children, and awesome family and friends.

Curt amazes me each day. He is so patient and caring. He is always trying to do things for us and for others. Even through all of this, he is constantly thinking about the needs of others. Last week was a rough week for me. Sometimes I wish I could crawl in a hole and not come out until it is all over. Many days I feel I don’t have the strength to continue on like this. It is truly the support of Curt and our friends that get me through those dark days. Although I try to hide my weariness from the kids, Clarissa always picks up on my bad days. She has a special gift for reading people. Whenever she knows I am struggling, she takes over family duties. She picks up her brothers, shops, cooks, cleans and instinctively does what needs to be done. She is truly amazing and mature beyond her years. We are sorry that she has to help carry this burden. The boys are also sensitive if there is any sadness at all in our house. At those times, we all come together and cry. Then we get up and move on. Sadness doesn’t last long around here! We are thankful for our wonderful children and are inspired by their strength and love.

Please pray for Curt’s strength. He really needs a little more in his legs. It would be nice if he could take a few steps without having such shaky legs and being so unstable. I worry about him in the mornings, trying to shower and get himself ready while none of us are home.

One last pitch for the ALS walk on October 9th! We would love to see you if you can come. You can register now, on the right-hand sidebar, or register the day of the event. If you would like to purchase a t-shirt, please email Lynn (link on right-hand side bar) by tomorrow, Wednesday the 29th. Remember to bring your lunch, blankets and whatever will be fun for your family. We will all hang out after the walk and catch up with each other over a picnic lunch.

As I say every week, but I can never say it enough, we love our friends and family. Thank you for caring and praying and hoping and believing!

Love,

Cindy, Curt, Clarissa, Cayden & Corbin

ps: Please click on and read the comment under the update entitled "Different". Our friend Barbie from Oregon wrote the most touching comment. We hope it touches your hearts too.

 

 Curt & Corbin at Soccer

 

Krystal, Lindsey, Clarissa, Curt, Cayden & Steve-O

 

Clarissa giving Curt his shot for the first time.




Nervous?




Maybe it's not so bad.



All done! Great job everyone!

Just another fun filled day at the Ziemke House!

Breathe

Dear Friends & Family,

As a child I loved to see how long I could hold my breath under the water. In lakes or pools I would challenge anyone who was willing to a “hold your breath” competition. As I got older and went through lifeguard training this technique really helped me get through the grueling classes and ultimately pass the final to become an official lifeguard. Being under water is quiet and peaceful and time seems to stand still. There are no distractions, sudden movements or loud sounds. Everything in a sense is blurry and muffled.

Into adulthood and as a family, we have a tradition of holding our breath as we go through tunnels. As we are about to enter a tunnel everyone in the car takes a deep breath and tries to hold it until we get out of the tunnel. Curt usually slows the car down and makes it really tough. The challenge is to make it out of the tunnel without needing to gasp for air. Some of us make it longer. The last person holding their breath wins! Silly, but fun!

These days, I find myself holding my breath constantly. Not consciously. It just happens. The other day my face was tingling and numb, I realized I had not been taking normal breaths for some time. Yesterday it happened again. I had to pull my car to the side of the road and just breathe. As I sat there, I realized why my subconscious is doing this. First of all, when you don’t breathe time seems to stand still. That is what I want these days. I want to be with Curt as long as possible and if I can make time stand still that would be great. I also realized that when you do not breathe you do not have pain. When I breathe deep my stomach feels sick and my heart hurts. My heart actually aches, it aches for Curt, for our children and for everyone that knows him as a friend. I hate this disease and just want a moment of what we had before; a carefree, happy life. Even though we are making the best of our situation, deep inside it sucks. It sucks the air from my lungs and the happiness that was throughout my whole being.

Curt came home from his four day fishing trip on Sunday. I am not sure if I was just not noticing how much he is still regressing or if he massively regressed over the four day trip, but things are not so good. He can barely walk a few steps now and his hands have lost almost all muscle. They are thin and bony and barely work. I am so sad for him and it hurts to watch him struggle with simple tasks. He continues to try to do most things and his attitude is so positive, we usually just laugh things off and do what needs to be done. Meanwhile I forget or choose not to breathe.

On a different note...

Curt & I met Jim Beedy when we were 16. He went to North High (we all went to West), but made friends with my brother and George Kudo through SCROC, an after school occupational center. Jim was a nice guy and instantly became a part of our group. We all hung out together through high school and then after high school continued spending time together with weekend motorcycle trips to the desert and boating trips to the river. In 1996 Colleen came into Jim’s life. We all loved Colleen for her kindness, energy and the fun she brought to our group. Colleen had also attended North High and her and Jim had a lot of mutual friends. Our river trips were full of fun. We all watched as Jim taught Colleen to ride motorcycles and drive sandrails through the desert. Soon it came time for kids. They struggled to become pregnant and Colleen ended up having to endure months of fertility treatments. We were so excited when they finally conceived twins! Colleen had some complications during the pregnancy and ended up on bed rest for a month and then 96 days in the hospital. We visited often and even had a candlelight dinner for four in her hospital room. Although it was a really difficult situation, Jim and Colleen made the best of it and were blessed with healthy baby girls; Paige & Chloe on August 1, 2000. I cried when I visited her in the nursery and she was breast feeding her tiny babies. We were so happy that they finally were all safe and together as a family.

As of last Friday, Jim & Colleen are facing a tough battle. Colleen was diagnosed with Grade 3 Breast Cancer. They are still in the process of tests and figuring out treatment options but know for sure she will need chemotherapy, surgery and radiation. Please pray for our great friends as they face this terrible disease. Pray for Paige & Chloe also. It is going to be a long road for the family.

Jim, Colleen, Chloe, Paige & Scout Beedy
November 2009

Jim & Colleen have been a great source of help for Curt & I since Curt was diagnosed. Jim comes over every other week and does manly-man projects around our house, there is always something that needs to be fixed and Jim can fix anything. Colleen has cooked us meals, organized and hosted dinner parties, and is always ready to go scrapbooking for the day to ease my mind when needed. We will always be thankful for what they have done for us and now it is our turn to try and help them.

Last night I woke up at 3:00 am after a vivid dream. Our family and the Beedy family were all standing on a cliff in Palos Verdes. We were looking out at the lights of Los Angeles when I noticed below us was a huge dump. Trash and scavenger birds circled the air of the dump. It seemed the ground under our feet was caving in and pulling us all down towards the dump. We all kept stepping backwards but couldn’t move fast enough. I woke up with the feeling that the dump was Colleen’s cancer and Curt’s ALS, it is trying to suck our families in as we are trying to stay above it all. We have to keep focused on the future and not let these terrible diseases pull us down.


The Beedy Family & Jim's Parents - Duane & Nancy at Curt's 44th
February 2010


We are still looking forward to the ALS Walk on October 9th. If you had problems joining the team, the computer glitch has been fixed as of yesterday. Try it again. We hope to see lots of friends there walking beside Curt! Deadline to order t-shirts is September 28th, if you need one please email Lynn ASAP.

Thanks for thinking of us and praying for us.

Love,

Cindy, Curt, Clarissa, Cayden & Corbin

Different

Dear Friends & Family,

I attended college in a small town in East Texas. Although I had spent many summers traveling across the United States with my grandparents, I had never spent more than a couple of weeks outside of Southern California at a time. East Texas was a big awakening for me. The traditions were strong and steadfast there. I learned that you don’t wear white between Labor Day and Memorial Day, Sundays were completely about church, to the extent that almost all stores and restaurants were closed in order that all employees could attend church.

Not long after I arrived at Jacksonville Baptist College, I met a guy who was born and raised in that small East Texas town of Jacksonville. For the sake of this story; we will call him “Bud”. Bud was Texan to the core. He was tall and dark with big hands and long legs. His accent was so heavy I could barely understand what he was saying when I first met him. Bud was a few years older than me; he didn’t attend my college, just a guy from town, a friend of a friend. He used to hang out in the dirt parking lot behind my dorm in his big truck. A bunch of us girls would all pile in the cab of his truck and just sit there and talk. He said he liked my accent, which made me crazy, “Californians don’t have accents, Texans do.” I never saw Bud dressed in anything other than jeans and cowboy boots. It didn’t matter if it was super hot and humid or freezing cold, Sunday church or a workday. He became a great friend to me and we spent a lot of time together as friends.

When he got off work he would pick me up from school and we would drive out to the country to check his hog traps. Hog traps, dirt roads that go on forever in the middle of nowhere, and having to do this daily was a whole new world to me. It was fun to hear his stories as we would travel from trap to trap. Sometimes he would take me fishing. I had never seen a person launch a boat, tie it to a tree, park the truck and trailer and get back in the boat. I had always seen my parents and their friends do it as a team. When I offered to help Bud, he always laughed, shook his head and went on with his routine. Fishing along the shore was also new to me. I was used to big open lakes with no trees. This lake was surrounded by trees; every time I would cast towards shore, my line would get caught in a tree. He would shake his head, put his pole down and untangle my line. When I was with Bud, I felt like a foreigner in a strange land. I just kept trying to get things right. Everything was so different in East Texas and with Bud.

Once again, I feel like a foreigner in a strange land. Having Curt in a wheelchair is different. When we go places like concerts, high school football games, friends’ homes or weekend get-a-ways we have to plan ahead. Stairs, parking, accessible bathrooms and temperature (if he gets cold his muscles stiffen) are all things we have to figure out. This is a different journey for both of us. We were so used to spur of the moment, just “wing it” and go trips. I am thankful that we are still able to do so much. Our days are full and that keeps life fun and makes all the work worthwhile. We are figuring out this new way of life as needs arise. I was not excited about having to install safety grab handles in our newly built master bathroom; but Curt was able to find bronze handles that blend in perfectly. Thank you Jim for installing them and making everything look so nice.

It was different having to buy a wheelchair accessible van. Although Curt was not excited about having to drive a van, he is happy with the freedom it gives him to take his power chair and once again shop at Home Depot and all those manly-man stores.

It is different to walk beside Curt as he is in the power wheelchair. I miss being eye level with him. Sometimes I get in the other power chair that was loaned to us and we cruise down the street or around the block, holding hands at eye level. It is different.

The other day I saw a man on TV running down the beach; I tried to remember what Curt looked like running. Already my mind has forgotten. It has only been a year since he was able to run, I can’t believe I forgot what he looked like. Is that a gift? Pretty soon, all that we are going through will be normal, not different. I will cast my line and it will not get tangled, I will master what this disease is doing to our lives and all that is different.

We spent last weekend in Palm Springs with 10 of our awesome friends in a gorgeous home lying by a fabulous pool in the warm sun. We all felt truly spoiled in such a beautiful place. Curt was able to get all around the home and yard and cracked us up with his amazing wheelchair stunts. Thanks everyone for making the meals to fit into Curt’s diet and for helping load and unload our car and everything else you did to help us! Curt is leaving Thursday for a “guys only” fishing trip in the Sierra Mountains. I know he will have a great time with all the guys!

We are all doing well right now. This new team we have of a doctor, nutritionist, pharmacist, physical therapist, and the “mad scientist”, is giving us hope. They are all working together to stop the progression of the disease and hopefully begin some healing. We are all feeling hopeful and excited!

Thank you for all your prayers. God is good!

Love,

Cindy, Curt, Clarissa, Cayden & Corbin

Curt flew from California to Texas to escort me to my Formal Banquet at Jacksonville Baptist College in April of 1986.

Please Join Us!

Dear Friends & Family,

Helping others is something our family loves to do. On Saturday, October 9, we will be able to help others with ALS by raising funds to support the ALS Association. We have formed Team CZ and will be raising money and walking as a team to help in the fight against ALS.

Please gather your families and friends and join us at El Dorado Park in Long Beach for a 2 mile walk. Bring lunch for your family and join us for a picnic after the walk. It will be fun to see everyone there, supporting Curt!

In order to join our team and walk or simply make a donation click on the ALS Website.

We had a great Labor Day Weekend. Friday, we celebrated Corbin's his actual birthday with family at Fuddruckers. Saturday, we joined lots of friends of the Popp Family in their new home in Acton for a housewarming pool party. My cousin Alyson, her husband Jeanno, and kids Dominic & Ethan came from the Sacramento area and stayed with us Sunday & Monday. It was great to hang out with them by the pool, grill steaks and catch up with each other.

As of today, all the kids are back in school. Corbin is now a 5th grader. We are looking forward to a great school year. Clarissa and Cayden have been in school a week now as a senior and a sophomore, they are happy with their classes and teachers. I have to say that we are very impressed with the teachers and counselor at Los Alamitos High School. They have been so compassionate doing all they can for our family. We could not ask for more caring and genuine people, especially Clarissa & Cayden's counselor, Mrs. Olshan. Thank you so much for supporting our family.

Curt is doing well on his new supplements and diet. He is eating foods that are good for his body. He has more energy, is speaking well and sleeping well. He has learned new exercises from Andrea Henderson, who is a physical therapist and has volunteered her time to come weekly and teach Curt. Thank you Andrea! With daily workouts these exercises will help Curt maintain the muscle and coordination he has and hopefully he can get stronger in time.

Thank you all for continuing to pray for health and healing.

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

Clarissa & her Los Al friends stopped by Fuddruckers on their way to the football game
to wish Corbin a Happy 11th Birthday!