Clarissa's Story About Her Dad

Dear Friends & Family,

A weekend at the desert, with snow filled mountains, riding motorcycles with 27 friends....priceless. Curt had a great time this past weekend, on an all guys trip with the greatest friends a person could ask for! I was home, blessed with many girlfriends and family over the weekend helping to prepare for Curt's Big Birthday Bash in February. Curt & I feel so lucky to have so many awesome friends!

I have not said much about the kid's personal feelings and how they are dealing with Curt's diagnosis in these updates. They are each on their own private journey. They confide in family and close friends, as well as trusted adults and teachers. Last night Clarissa wrote a reflective essay for her English class. It is about her dad, his diagnosis and her feelings. I asked her if I could share it with everyone and she said yes. Here it is:

Clarissa Ziemke
Mr. Kerns
Per 5
January 26, 2010

I once heard a story of an amazing baseball player who had his career, love, and life taken away. Lou Gehrig was struck with a terrible disease called Amyotrophic Lateral Sclerosis or ALS. This is a neurodegenerative disease that affects nerve cells in the brain and spinal cord to the muscles throughout the body. I never thought something so tragic could happen to someone so close to me. My dad was discovered to have ALS around September of last year.

I will never forget that Wednesday night, my family sitting around the dinner table making jokes and laughing like we always do. The table was cleared and my mom said there’s something we need to tell you. I knew in that moment that our lives would never be the same. I had, for a while, had a feeling that something was wrong. My dad had been going to the doctor quite often over the summer, and when I asked my mom if he was okay, she told me he was going for ‘muscle twitching’. But I knew there really was something wrong. I figured she just wasn’t ready to tell us yet. My dad kept his eyes down while my mom started to explain. Silent tears ran down my face as my mom told me the estimated life expectancy was 2-5 years. I couldn’t look at my dad, and he didn’t look up. My youngest brother Corbin ran to his room before my mom was done explaining and my middle brother Cayden started crying softly to himself. When she was done talking, Cayden went to his room and my mom went to go check on Corbin. I sat at the table with my dad, and for the first time in my whole life; I didn’t know what to say.

“When you come to the end of your rope, tie a knot and hang on.” I’ve started living by this quote by Franklin D. Roosevelt. I interpreted it two different ways. When I’m having a bad day and want to give up trying to put on a good face, I think of it and smile. I think of what my dad is going through, and I know I need to stay strong for him and my family. The second way I think about it is like an actual rope swing. My dad used to push me on one we had up at our lake house. It was on a hillside and we really did have to hang on. It was fun, scary, painful, and exciting but it was worth it; just like my life is going to be now. I believe this happened to my family for a reason. God has a plan for our lives and he’s going to use to my dad to do great things. (More than he already has). I realize now how much I take for granted and how truly amazing my life is. I’m learning to make the most of what I have and enjoy every little moment while I can. I look forward to every moment we have together, and the fun memories we’re making every day.

........we are so proud of her!

Love,

Cindy, Curt, Clarissa, Cayden & Corbin

The Pizza

Dear Friends & Family,


The other night Curt & I went out for pizza. He asked me what toppings I would like on the pizza, as he waited for an answer my mind raced. Who am I to choose toppings? I have a lifetime of pizzas and topping choices ahead of me. Who knows how many more pizzas he will get to enjoy? I want these days to be perfect for him. Curt has always put everyone before himself. He is truly the most selfless person I know. How lucky am I to be the one who got to choose toppings and just about everything else a couple decides. Back to the pizza....after I insisted that he decide on the toppings, we had pepperoni, onions and olives. It was the best pizza ever!

Curt took the boys to Monster Truck Jam on Saturday. They had a good time and enjoyed visiting with our friend from high school who drives the Obsession truck. Sunday evening he grilled up some tasty fish on his new bar-b-que. He is keeping busy, which helps. His body is getting weaker by the day. This is very frustrating for him. Please pray that the deterioration will slow down. We just got word of a new stem cell trial in Louisiana. They are sending us a questionnaire; the doctors will review it and then choose their patients for the study. Please pray for the right decision to be made.

Thank you to those who have reached out to Curt with phone calls and cards. This truly touches him.

Love,

Cindy and Curt, Clarissa, Cayden & Corbin

I Wish I Could Freeze Him

Dear Friends & Family,


While I was taking Corbin to school the other day, a Taylor Swift song came on. As we were listening, Corbin said, "I wish I could freeze her until I caught up to her age and then unfreeze her". This past week I have been wishing I could freeze Curt. I wish I could freeze him until there is a cure for Lou Gehrig's disease. I believe that within a few years this will be a totally curable disease. There is so much research going on right now for Lou Gehrig's Disease. Sadly, I watch Curt's health deteriorate daily, knowing that the cure will not come fast enough.

We have an opportunity to get a stem cell treatment in Monterrey, Mexico anytime. The doctor there was recommended by our friends who had a relative treated there (for a different disease) and had great results. The US doctors advise against any stem cell treatments in other countries as they are not monitored and there is no data on effectiveness or safety. But I am beginning to feel desperate, I feel we need to do something now to stop or at least slow down the deterioration.

There is also a research study at a well accredited hospital in Monterrey, Mexico that we are trying to get Curt accepted into. He would not be eligible to be treated until after July. We are not sure we want to wait that long. Please pray for us to make the right decision.

On a happier note; we had an awesome week last week. We celebrated my birthday pretty much all week. Dinner on Wednesday with my parents, Curt's mom, and the kids was lively and delicious. Friday my friends arranged a day at the Spa! We all enjoyed massages, an outdoor hot tub soak, a grand Asian lunch on a private patio wearing our Spa robes, and finally a super indulgent shower. Thank you Carolyn, Lori, Lisa, Lynn and Jaime for making my day so special. You guys are incredible! On Friday night we enjoyed a shared birthday party with friends. Thank you Bill & Carolyn for a great party; the food, fire, music and laughs warmed our hearts. We spent Saturday getting Clarissa ready and off to Winter Formal. She looked beautiful in her red dress and high heels, thank you Michelle for doing her hair and make-up, she looked great. On Saturday night our friends Jim & Colleen threw an outstanding birthday party. We had fun visiting with friends by the outdoor fire, enjoying great food and wine, and playing the fast paced card game of Snatch. On Sunday we enjoyed watching Clarissa's first volleyball tournament of the season at a super cool facility in Hawthorne. Watching her play was exciting. Spending time with her and the other volleyball players and parents made for a great day. Cayden went to the movies with friends, had a sleepover and got to go shooting with Johnny. Corbin went on a Harley ride with my dad, watched a movie with my mom, spent the night with them and enjoyed a great breakfast together at their favorite place. Needless to say it was an exhausting (but good) weekend. We all do really well when we are busy; it keeps our minds on today, and making the most of each day.

The strength of our kids is impressive. They are really strong and supportive of each other. Clarissa was excited to take Cayden to volleyball tryouts last night and watch him try out. Cayden told Clarissa how beautiful she looked as she was leaving for Winter Formal. Corbin tells them both how much he loves them all the time. We are so blessed!

Curt & I talked last night about the dark side of what is to come. We cried together. Although Corbin was not in the room during the conversation, he felt sadness as Curt & I interacted later in the evening. Corbin told me he was sad for dad and then cried for awhile. It was bewildering that he sensed our feelings when we thought we were acting normal and covering our emotions. I took today off so Curt & I could spend some quiet time together. It started out sad and quiet but the amazingly beautiful weather lifted our spirits and we enjoyed a great lunch at Walt's Warf in Seal Beach. Just being together is all we need.

Tomorrow Curt is having another nerve/muscle testing session. Please pray for his comfort. It is a two hour test of needles and small shocks all over his body. They do this to measure his regression. They keep track of how fast his health is declining. He is so brave and ok with it all. It makes me sad to see him go through these painful tests, knowing that there is no point to the suffering he has to endure. I keep these thoughts to myself as I hold his hand and dab the blood that comes out when they remove the needles. I think positive thoughts and pray for him during the procedure.

Thank you to the McGhee family for setting up a meal schedule. Although we are physically ok right now, it is a really nice treat to come home to meals on Mondays. Thank you to all who have signed up, you are so thoughtful. The kids are amazed that people are making meals for us.

Once again, thank you for all your prayers and support. We talk often about how lucky we are to have you all in our lives. Thank you, thank you!

Love,

Cindy, Curt, Clarissa, Cayden & Corbin

About Our Family

Dear Friends & Family,

Thank you all for your thoughts, prayers, notes, calls and visits. Like I said before it really touches Curt and our family. We are so thankful for our friends, family and prayer groups throughout the counrty. Corbin and I were talking about all the people praying for daddy and the states and countries these people are in. We were excited to learn that a friend of friend is on a mission trip in New Zealand. She was going to pray for Curt on the highest mountain where she could be above all the noise of the earth and closer to God. We also have people in Mexico asking for updates on Curt and praying for him. It amazes me how far the word has spread about Curt.

Some people who don't know us personally have asked for details about Curt & our family. Here is some information:

Curt is 43 years old. He grew up in Torrance, CA, the youngest of 5 siblings. He was raised by loving parents who were married for 35 years when his dad passed away at the age of 58 (Curt was 29). Curt's mom lives nearby in Long Beach. Curt enjoys dirtbike riding and wakeboarding. He loves to be outdoors and active. He is the type who never asks for help and is always willing to help others. Curt and I began dating at 16. We were married at 22 (21 years ago). We have 3 children. Curt is a great dad and has been actively involved with the kids since birth. He takes them to doctor appointments, practices, shopping, whatever they need, he is there for them and happy to help!

Clarissa is 16. She enjoys motorcycle riding, wakeboarding and volleyball. She is sweet, responsible and fun to be around. Her and her dad love to tease each other and goof around. She has recently gotten Curt hooked on watching football. She loves driving and being with friends. Her weekends are always full of fun activiites with her friends; movies, shopping or just hanging out.

Cayden is 14. He enjoys motorcycle riding, wakeboarding, soccer, football and volleyball. He is smart, active and creative. He likes to work in the gargage with Curt on bikes, wood, or building things. He is strong and thoughtful like his dad. Although he will not be 16 until Feb 2011, he is anxious to get a truck and work with his dad customizing it for off road. He has awesome friends and is always busy.

Corbin is 10. He likes to ride motorcycles, wakeboard (sometimes), play soccer and football. He is sensitive, smart beyond his years, and funny. He says really crazy things and keeps us all laughing. He is good at reading people and putting things into perspective. He likes to ride his bike, play video games and hang out with his friends. He has been learning about guns and rifles and shooting targets with Curt at the Lake. He really likes the 22 rifle.

I am turning 44 tomorrow. I can't wait to blow out my candles and wish for many more healthy days with Curt. I come from a very close and loving family, my parents live in Torrance and have been married 46 years. I love being a wife and a mom. I enjoy planning dinners and trips with our friends, boating and motorcycle riding with our family and having the kids friends at our house for pool parties. Right now I am trying to shield myself and my family from the pain this disease has upon us. It is so hard to see Curt lose his strength day by day, and not be able to do anything about it. This is a terrible hopeless disease. For now, I have to stay busy and live for today, if I think about the future it is too painful and I can't breathe.

We enjoyed our Christmas break together as a family. We had a wonderful Christmas Day with both of our families at our house. Curt worked all day cooking prime rib, one in the oven and one on the smoker. They were delicious! We ate a tasty meal that everyone contributed to and then opened gifts and played a game. Then next day we left for my parents Lake House at Lake Nacimiento. While we were there Curt & Cayden tractored a bike jump on a hillside then we watched and video taped Cayden jumping. Later, Curt taught Clarissa & Cayden to drive his truck up muddy hills and how to slide it through the mud on a rainy day. He took all the kids shooting and then taught Corbin to drive the tractor and use the bucket and hoe attachments. We came home for one day and unpacked and then repacked . We spent New Years weekend at Ocotillo Wells, in our motorhome, riding dirt bikes. Curt was able to ride his motorcycle a little which made the kids really happy! We had a great weekend with great friends riding during the day and hanging out by the campfire at night. We are so blessed and thankful for our awesome friends!

We are looking forward this year to treatment options in Mexico for Curt. He is undergoing a lot of tests over the next month which we will send to Mexico and hope that they will accept him for a clinical trial in July (hopefully sooner). This seems to be our only hope. Thank you for continuing to pray for Curt. We love our friends and family!

Love,

Cindy and Curt, Clarissa, Cayden & Corbin