Telling Our Story on Video


Dear Friends & Family,

When Curt was diagnosed with ALS a little over 16 months ago, I knew that our future together was forever going to change. Curt is now in a wheel chair full time and he struggles to use his hands. It is getting more and more difficult for him to speak and it seems like a lifetime ago that things were normal.

Five months after Curt’s diagnosis, he and I sat down in front of a video camera (after a lot of urging from our friend Steve Gallie) to talk about our life and to share our story. I didn’t know exactly what I would do with this video, or even with whom I would share it....but now its purpose seems clearer. Curt looks so healthy in these videos, he could walk and talk so well. I’ve forgotten what it was like. Now I know that I was meant to share this video with all of you, our family and friends, who have been here to support us in so many ways...so you can remember Curt the way that I want to remember him...healthy and strong!

This is the first segment from that video, with more to follow.  We have also set up a Ziemke Family YouTube channel for all of the videos that we will be posting. A special thanks to Steve Gallie for encouraging us to sit in front of a video camera. Thank you for filming, editing and posting the videos for us. This is an awesome gift!
 



Friday, the 18th was Curt's 45th Birthday. We celebrated Thursday night at Buca Di Beppo with the kids, my parents and Curt's mom. On Friday morning, Bill & Carolyn Melanson hosted a breakfast birthday party at their house. A ton of Curt's friends were there (I guess nobody works on Fridays)! The food was delicious. Thank you Bill & Carolyn. I surprised Curt Friday night with a dinner at the office with a few of his closest friends. It was a fun party in a different venue! We spent the rest of the weekend catching up on sleep and relaxing. Whenever the sun would break through the rain and clouds Curt would sit outside and enjoy the sun. Otherwise he was in the house enjoying the warm fire (thanks Larry & Mark). Gotta love our California weather!

Have a great week!

Love,

Cindy, Curt, Clarissa, Cayden & Corbin


Barbara & Curt at Buca Di Beppo - Happy #45


Every other Friday Curt & I help with Bible verses in Corbin's class.
 Today, Clarissa & Cayden didn't have school so they joined us!

Breakfast at the Melanson Home



Happy Birthday Curt!

Birthday Dinner at American City Pest & Termite


George & Denise, Jim & Colleen
Happy Birthday!

Coping Tools


Dear Friends & Family,

ALS is the biggest thing in our family life and has been since Curt was diagnosed on November 11, 2009. But as a family, we refuse to be defined by the disease. We fight back the thoughts, the tears, and the havoc it has wreaked on Curt’s body and on our family. We have chosen and work hard to laugh instead of cry, to cherish the time we have together and to live each day to the fullest.

Here are some of the “tools” (in random order) that help us cope:

A full calendar - We have always been a busy family; weekend trips, friends, sports, and family events kept us running. Now, more than ever, we need to stay busy. Although Curt gets worn out easily these day, we normally have at least one thing to do each day or evening. A full calendar gives us things to look forward to and fills our time with memory making moments.

Music - In the mornings while we are getting ready for the day Curt & I listen to music. Lately we have been enjoying Cheap Trick, Bob Seger, Metallica, Styx and of course Kenny Chesney. The home and backyard stereos play country or classic rock during the day. In my car, when I am alone, depending on my mood, I go from country to christian to relaxing spa music or to angry head banging rock music. Sometimes we turn the music really loud and just “rock out.” It’s hard to be sad when you are listening to loud music.

Prozac - It’s not something anyone really wants to admit to, but, Prozac has been an integral part of our lives since Curt was diagnosed. One of the symptoms of ALS is uncontrolled laughing or crying. In the beginning Curt would get emotional and be on the verge of tears daily. Sometimes the kids would get him laughing and he wouldn’t be able to stop. Prozac has helped smooth out the highs and lows. It has helped me through rough patches also.

Communication - Between talking with friends, journaling and updating the blog; it feels good to get it out. Whether we are happy, sad, scared or frustrated it always helps to share it. Thanks for listening and supporting us!

Prayer - Pray without ceasing. That’s what we do.

TV - We have never been big television watchers. But since we have more “down” time we have discovered some great shows. Modern Family and Cougar Town make us laugh and we love to laugh. I love to escape from reality by watching The Real Housewives of Wherever, their drama takes me away from my own. We enjoy sitting in our newly redecorated living room (thanks Wendy), with a warm fire in the fireplace, just watching tv.

Alcohol - When Curt was diagnosed, I vowed to not use food, alcohol or any other crutch to get through this. I can honestly say that we have adhered to this vow. However, alcohol sure helps take the edge off of those rough days. Everything in moderation.......

Laughter - It goes without saying, laughter is the best medicine!

Cussing - I have never been one to use foul language, in fact I used to look down on people who cussed.....until now. Since Curt was diagnosed, there’s nothing like throwing a sh**, d**m it, or a*s in my vocabulary. Using those words gives us an outlet to express strong human emotions we have never felt before. It really helps release the stress and emphasizes the realness of life.

Friends - If you know us or have been a regular reader of our blog, then you know that above all, it has been our friends that have helped us cope. We are the luckiest people in the world to have the most amazing friends in the world.

Speaking of friends.....we have had another amazing week full of activities. Cayden got his drivers license, YAY! On Friday, Curt and his sister Beverly spent the day together, they went to Irvine to meet brother Bill and visited the newly developing Orange County Great Park. They got to go up in the Big Orange Balloon which is 75 feet wide and boasts views of 40 miles of scenery. My Friday Friends celebrated Jaime’s birthday at a fun vegetarian restaurant in Redondo Beach and then we enjoyed a little bit of shopping and some delicious cupcakes. While we were at lunch, we were monitoring the progress (through photos and texts sent via iPhone) of Melissa in Texas who was in labor with her third baby. By the time lunch was over we cheered as the photo of baby Rose came through! Congratulations Pond Family!

Friday evening we had the pleasure getting to know a new family. Russell, Kristina and Mitchell (6) joined us in the backyard for drinks and snacks. Russell is 47 years old and has been battling ALS since October 2008. It was great to spend time with them and be able to relate on so many levels. Russell and Curt talked about the daily physical and emotional struggles they have. Kristina and I talked about the responsibilities of being wives, mothers and caregivers. We all got along great and a definite friendship has begun!

On Saturday, a big group of friends met at Anaheim Stadium for the Monster Truck Show. Everyone had a great time. On Sunday, Curt, brother Bill, Clarissa and Cayden went to Jawbone Canyon for a motorcycle riding day trip. Curt said it was like old times being in the desert again. Corbin was treated to the movies by Lauryn for Valentine's Day. Then I joined them at the Melanson home for dinner; we enjoyed grilled chicken and lemon asparagus in their backyard around the fire. Curt & I traditionally somewhat boycott Valentine’s Day. We feel that you should treat each other as if everyday is Valentine’s Day....and with Curt it is. :)

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

Cayden can drive! Curt's truck is now Cayden's truck!

The Big Orange Balloon - Curt is up there!


Mike, Melissa, Noelle, Anna Kate and new baby - Rose Avery Pond

 
Monster Trucks


Jonathon, Bill, Beverly, Curt, Clarissa & Cayden

The Monster Truck Group


Clarissa, Cayden & friends at Jawbone Canyon


That little speck is Clarissa - go girl!

Cayden, Conner and Zach racing up the hill!

My Parents by Clarissa


Dear Friends & Family,

Ever since I was old enough I have made my own lunch for school. Sometime around eighth grade my dad started making our sandwiches for us, we got used to it and soon I never thought twice about it. He made them after he got sick, but once his hands wouldn't permit him anymore my mom started doing it. She could’ve told us we need to start making them again, but being the incredible person she is, she started making them every morning with no complaints. She is the most amazing, selfless, helpful and kind person I know. She is so fun and is always ready for the next adventure.

My mom & I spent last weekend together when the guys were at the lake. It was nice to hang out with her without the boys jumping in all the time. I always hear my friends complain about their parents, how annoying they are or how they don't understand. I tell people all the time I have the coolest parents ever and I can honestly say I mean it. I can talk to them about anything; we have fun together and are always laughing like crazy. I love having parents who are so supportive and truly want me to be happy and succeed.

For the past year, I've been hanging out with my dad after school. We constantly laugh, usually at each other. His humor helps me deal with his disease. He is so positive; it completely amazes me every day. He always comes into the room with a smile on his face, ready to make people laugh. If he’s not tanning (hehe), he will roll out to my car when I get home asking if I need help with my bag. I am speechless for how helpful and selfless he is. I am so grateful for the time we get to spend together, I am enjoying every second of it. I try not to think about the future, but it’s always in the back of mind. We are definitely learning to live it up and enjoy every moment. He is the best Dad ever.

With love, Clarissa

The past two weeks have been filled with friends and parties! Friday breakfasts with the group at Adelitas, dinner at a Lebanese Restaurant with the Melansons, movies with the kids, Belmont Brewery with the McGhee Family, lunch and football at the Coyle home, DuBunne Day Spa with Carolyn, girls night out to The Melting Pot and the next night at Islands, while the guys were at the lake. Northwood’s Inn with Mark & Kelli (happy 26th anniversary!), Corbin to winter camp for the weekend, Cayden to Super Cross, Clarissa to basketball games, Chinese Food with the Hunters and Coyles. Super Bowl party at our house Sunday and dinner tonight at Ruth’s Chris for Cayden’s 16th Birthday. Wow! We are super blessed with a full calendar and just enough energy to enjoy it all!

Curt struggles daily to move, eat and talk. You would never know it because his attitude is awesome. He is enjoying the constant activity and flow of friends through our door. Thank you all for your support, love and prayers.

Love,

Cindy, Curt, Clarissa, Cayden & Corbin

Guys Trip - Lake Nacimiento
(Cayden not pictured)

Girls Night Out - The Melting Pot

Friday Breakfast at Adelitas


Happy 26th Anniversary Mark & Kelli!
Northwoods Inn


Gotta love the naked women paintings hung with the deer mounts.


Our street was way into Super Bowl - 4 neighbors were having parties!


Almost time for Super Bowl


 Let the game begin....

Bill Z, Mike Casey, Steve-O, Jim & Curt
 Bill, Curt & Mom

 Cayden's 16th Birthday
 and
Cayden & Krystal's 1 Year Anniversary
At Ruth's Chris
They exchanged gifts: a ring and a watch!

Congratulations!

Grandma & Corbin

Don't Feel Much Like Writing


Hi Friends,

Curt & I spent a great day together. We didn't do anything special, just hung out together and as a family this afternoon. Cayden has friends over and they are working on their vehicles. Clarissa is looking through family photo albums and designing her & Cayden's invitation for their birthday party. Corbin wants to snuggle. I just want to be with them, not in front of a computer. Check back later this week; maybe I'll post something.

By the way; thanks Bill Melanson for organizing a fun guys weekend. Curt had a great time and enjoyed getting away.

Love to all,
Cindy, Curt, Clarissa, Cayden & Corbin

Tonight at our house...
Johnny, Cayden & Jacob working on Johnny's truck.
Curt's teaching them how to polish wheels.