He Who Has Hope.....

Dear Friends & Family,

I have a million little stories in my head I want to share. I think about writing all the time. The problem is I can't right now and haven't been able to for a month or so. I have realized that when I have hope (when Curt is doing well), I can write; when I am sad, I can't write. It is too painful to think about the past and relive our memories. A year ago I wrote an entry entitled The Fortune Cookie. The fotune cookie contained a fortune that said "He who has hope, has everything". Yes, hope is so important! Here's the link if you want to read how we were feeling a year ago: The Fortune Cookie

The last few week's updates have been about living with ALS. Many of you have reached out to Curt (and me) with support and understanding of our reality. We thank you for your kind thoughts. I want this to be an encouraging and uplifting blog. I don't want to complain about our situation, but, I want to let everyone understand what a warrior and hero Curt is.

Anyway, I hope to share some of our happy memories of our past in the near future. Until then, please pray for strength for all of us. We are thankful for each of you.

Cindy, Curt, Clarissa, Cayden & Corbin

The Bottle Inn, Hermosa Beach with Mark & Kelli

Dinner with Jim, Colleen, Chloe & Paige Beedy

Daily Struggles

Dear Friends & Family,

With each passing day our struggles are increasing and our love and patience is tested constantly. I can't begin to imagine how someone could go through this without the deep love Curt & I have for each other. It is so difficult to watch as Curt struggles to hold a fork and feed himself, as he tries to shave or stand up at the sink to brush his teeth. He can barely manage the zipper on his shorts, hold a cup or open doors. Fixing himself a meal, dressing himself and even getting into bed without assistance is out of the question. To watch my strong, handsome man wither away makes my heart hurt every moment.

More and more his ability to speak diminishes each day. Sometimes his words are hard to understand so I try to listen really hard so he doesn't have to repeat himself. He can't talk loud so he has a hard time communicating in noisy places. When we are with friends I find myself talking more in order to relieve him from having to struggle to speak. If someone asks him a question that needs more than a few words to answer, he will look at me to answer for him. I often wonder if we should be going over details for the future and saying all that needs to be said before his voice is gone completely. But, things like that can't be forced. We have been great communicators for 29 years, I think somehow we'll figure it out when that time comes.

Clarissa continues to spend tons of time with Curt. They are always laughing and leaving the rest of us wondering what is so funny between them. Cayden is busy with volleyball and friends, but is great to help around the house with manly duties that I can't handle. He is always right there to help his Dad get into bed or help make him more comfortable in his wheelchair or whatever Curt may need. Corbin is our snuggle bug. As I am writing this he is asking us to get into bed so we can have snuggle time. He enjoys getting Curt ready for bed which helps me out a lot. He often brings Curt slippers, water, a blanket for his lap or whatever he thinks would make Curt more comfortable. Our kids are awesome! It breaks my heart that they have to go through this.

We are blessed to have Rosalie, Curt's caregiver, here Monday through Thursday. She arrives at 10:00 am, after I have showered and dressed Curt, and makes him a super delicious breakfast and coffee! I leave for work and they plan out the day. If it is sunny out, Curt will sit in the back yard and enjoy the sun while Rosalie tidys the house and does laundry. Later, they will shop for dinner ingredients, go to the dry cleaners and other random errands. She and Curt pick up Corbin from school in the afternoon. I am kind of a freak about a clean house; thankfully she is too. I love that she can cook anything and it all tastes so good! She is full of energy and can talk to anyone. Most of all I am thankful that she cares so much about Curt (and our entire family). She has taken so much pressure off of me and given me more time to spend with my family.

Without the support of my parents, Curt's mom and siblings, and all our friends; life would be so much more difficult. It is a constant battle to manage this disease and all that it brings with it. I miss the carefree days of the past and sometimes want to get in my car and just keep driving. I haven't done it yet and probably wouldn't get too far before I started missing Curt and turn back towards home. Thank you for praying.

Cindy, Curt, Clarissa, Cayden & Corbin

At Carolyn's "Gidget and Moondoggie" Birthday Party

Happy Birthday Carolyn!  with Debbie & RaeLynn

Sunday Funday with our great neighbors!
We enjoyed chili billys, fruit, chinese chicken salad, veggies and a movie by the warm (but smokey) fire. Perfect way to spend a rainy day!

Running - Part 2

Dear Family & Friends,

The best part of running is the fact that we are surrounded by friends and family running right along side us. We are so blessed by people who care. After my post last week we received an outpouring of encouragement; emails, cards, invites to go out, phone calls and meals delivered to our door. I am amazed by how many people truly care about our family and our journey. We are so thankful for each of you!

The last two weeks have been busy as usual. Here are some highlights in pictures!

This was actually from Valentine's Day. Lauryn's parents wanted to share with us the card that Corbin made for Lauryn for Valentine's Day. As parents, we are so proud of the respect they show each other. Corbin is not a big writer, in fact, he hates to write, so this is truly a work of love. With Corbin & Lauryn's permission, I am sharing what Corbin wrote inside.

Dear Lauryn,

I love u and hope we are together for a long time you are the reason I have happiness in my heart. When I get sad u make me feel better. When something happens like one of my family members get hurt u make me feel better about myself. When I get hurt u comfort me. U are always there for me. U are the one I love. When I get sick u do amazing things for me just to make me feel better. You show me and my family amazing compassion. U love my dad as I would love my dad. When u get mad at me for buying u gifts that shows me that u could take advantage of me but u don't. You're unselfish and u go out of you're way to do stuff for every person u see that needs help.

There are so many quality traits u have that I couldn't even name them all. When my dad first got ALS u were there for me. U are always there for me whenever I am sad whenever I am happy when I accomplish amazing things whenever I need u, u are there for me. U are actually the first girlfriend I've ever had. I love u.

Love, Corbin

Corbin & Lauryn - 3 months together
....or 98 days as Corbin keeps track
Cayden's Volleyball Fans

Barbara/Mom/Nana & Cayden
Clarissa is 18! Girls night out!

Hooters! Happy Birthday Clarissa!

Clarissa & Cayden's Birthday Party Invitation
Clarissa & Cayden planned most of the party details, shopped, decorated and narrowed the guest list down to 100 friends. Yikes!
Below are the photos of this awesome party.

Happy #18 Clarissa & # 16 Cayden

Cayden & Krystal

The mechanical bull was a hit! Go Clarissa!

My mom spent countless hours making Clarissa the perfect dress for her party! Clarissa loved it! My mom also shopped for and purchased Cayden's, Curt's and my shirts for the party! Thanks Mom!

The party was so much fun! Clarissa & Cayden have really nice friends (so the 10 chaperones were a little bored). Thank you; Andi, Debbie, Jim, Carolyn, Bill, Mom, Dad, Barbara, Bill Z & Sharon for all your help!

Sunday Funday!
Happy hour, movies and Enrique's Mexican Restaurant with our wonderful neighbors!

Terranea Resort in Palos Verdes with George & Denise
Happy Birthday George!

Once again, thank you all for being there for us through this difficult journey. Please pray for Curt as he has so many physical struggles each day. He tries so hard to remain positive through all the frustration and emotional pain he is enduring. He is truly my hero!

Cindy, Curt, Clarissa, Cayden & Corbin


Dear Family & Friends,

I have been running for almost two years now. I began running in June of 2009 (when I suspected Curt had ALS) and have been running non-stop since then. I am running from the fact that my husband will never be able to open a car door for me, that we will not grow old together and that my children will not grow up with a father. I run constantly. I run from sadness. I run from the physical pain these heavy emotions cause me.

Today, I stopped for awhile. I stopped running. I sat in a waiting room while Curt got a massage on his stiff and atrophied muscles. I tried to breathe, I tried to remain calm, I tried to appreciate the gift of time; but all I could do was cry. I hate being still. I hate feeling these awful emotions. I want to run.

Curt is not sleeping well, therefore, I am not sleeping well. He can not change positions on his own, so we work on trying to get him comfortable most of the night. This disease sucks. It is inhumane and as I read recently "the most dreaded disease known to man."

We are living a nightmare.

Cindy, Curt, Clarissa, Cayden & Corbin

Our Children

For awhile it seemed I knew my children’s profiles better than the front view of their faces. We spent so much time driving to school, sports, etc., our quality time was spent in the car. I enjoyed those days, they all seemed to open up to me in the car, I think they felt safe and the fact that I wasn’t looking them directly in the face helped. Times have changed; two kids are now driving themselves to school and all their activities. I am happy that although we no longer spend a lot of time in the car together, we still have great conversations.

Our family is very open with each other and there is no subject off limits. This has helped in dealing with ALS, the kids can ask anything and we talk about everything. The fact that Curt has a terminal disease is handled openly and a lot of times with laughter. For instance, the other day as dinnertime was approaching, I made a comment that I was “dying of hunger”. Clarissa said, “You are not dying mom.” I said, “Oh yeah, that’s Dad who’s dying”. We both laughed. That comment may sound cruel and insensitive to outsiders, but we laughed it off and continued cooking dinner.

Clarissa gets home from school at 2:00 and spends most afternoons with Curt. Many times when I get home I find them literally laughing their heads off. The other day, Clarissa was on the floor in stitches and remained there laughing long after I was in the door and trying to find out from her or Curt what was so funny. Clarissa and Curt have many “inside” jokes. I have not been able to break the code as to what they are laughing about and how they can continue on for hours. Clarissa has been a huge help to us. She picks up Corbin from school whenever needed, runs errands, helps cook and will do anything we ask and never, never, never complains. She has an amazing ability to see when I am getting overwhelmed and she will just step in and take over, giving me a break, without any words between us. She is an A student and her teachers seem to really enjoy her. Although she is busy on the weekends with friends we love when she hangs out with us and our friends. She is great about seeing Curt’s needs. She helps feed him, makes his drinks and drives him all over town. She has always been mature for her age and I used to worry about that. But with what we are going through now, I am glad she is mature and realizes how precious this time with her dad is.

Cayden is the busiest of all the kids right now. Along with school and volleyball he has zillions of friends and a socially packed schedule. He rarely sits down for more than 30 minutes. Cayden has the awesome ability to fix anything. Since he was young, he always wanted to take things apart to see how they worked. Last week he fixed the broken heel on my shoe, something Curt would have done in the past. He made a horn and a radio for Curt’s wheelchair, just for fun, out of random items in the garage. He has been enjoying adding accessories to his truck, he knows all the wiring and has done some amazing stuff on his own. He and Curt spend a lot of time talking trucks, motorcycles, muscle building, stereos, music, etc. Cayden is trying to get as much knowledge from Curt as possible. Cayden realizes that their time is limited and that soon, he will be the man of the house. For as busy as Cayden is, he spends a lot of time with Curt and is super helpful with his needs. Cayden is right there to help Curt with projects in the garage, he helps him get dressed, into bed or out of bed. He is so strong, he can literally lift Curt and place him where ever we need him. Cayden is also an A student; schoolwork seems to come easy to him. He is respectful to adults and, like Clarissa, can talk to anyone.

Corbin is super sweet, he has a big heart and keeps us laughing. When Curt was first diagnosed, Corbin seemed to pull away from Curt and became a Mommy's boy. But, over the past few months, Corbin has gotten much closer to Curt. When Curt first began using a cane and then a walker it seemed to create a barrier between him and Corbin. Corbin didn’t like all this adaptive equipment coming into the house and cried whenever he saw Curt regress and especially when Curt would fall. I tried to keep a lot of the stuff hidden until Curt actually needed it, to protect Corbin’s feelings. Now he has totally accepted all the equipment and even the wheelchair. This story says it all: We have a spare wheelchair in the garage from MDA. Corbin uses it to go to neighbor’s homes and races around the street with Curt. Well, last Saturday morning Curt & I got out of the shower and found that Corbin and the spare wheelchair were gone. We figured he was down at the neighbor’s house. When Curt went to check on him he was coming down the street with a Target bag. He had taken the power wheel chair up to Target to buy an X-Box game. We didn’t know whether to discipline him for going to Target without permission or laugh at the thought of him cruising across Seal Beach Blvd. and through Target in a wheelchair. Curt and I looked at each other, began a stern talk, and then ended up laughing. Needless to say, Corbin has come to accept the wheelchair. Corbin has been super attentive to Curt’s needs lately. He worries about Curt’s cold feet and offers to get his UGGS, he brings him water, helps him eat, lays in the sun with him and has really enjoyed shaving (electric) him. Corbin enjoys snuggling with us in bed and always turns on Curt’s heating pad for his feet. He knows how much Curt likes fires in the fireplace and has become great at building and maintaining fires. The other night Curt taught him how to barbecue hamburgers, he was so proud of himself. Like Clarissa and Cayden; Corbin also does great in school. He is very responsible and somewhat mature for his age. He is a planner and thinks about the future a lot. I have to remind him to stay in the moment. I want him to remember his dad.

Our children amaze us every day. Their strength through this ordeal has been awesome. Their love for one another as well as us, is inspiring. Their laughter is contagious. I thank God everyday that we can still laugh as a family.

Los Alamitos High School Boys Volleyball season has begun. We enjoyed a dinner in the gym with all the boys and their families on Thursday. Friday’s breakfast at Adelita’s was so well attended, we had to split into two tables! It is so fun to share Friday mornings with so many people. Curt loves watching his different friends meet each other and become friends. Corbin began his Friday Night Lights flag football league on Friday night with a double header in the rain. Burrrr! Then we were up early on Saturday and off to Orange for Cayden’s first volleyball scrimmage. Back home in time to get ready for Tracy Tague’s wedding. Tracy was each of our kids’ 4th grade teacher. She has been special to our family and it was fun to see her get married. On Sunday, our neighbors, Larry & Debbie and Mark & Kelli took us out to Spaghettini for Curt’s birthday. The evening was full of lively coversation and laughs! We have the best neighbors anyone could ever ask for! We are also blessed with all of you who read this blog week after week and lift our family in your prayers. Thank you!

Please see this week’s video story “We were meant to be together” on the sidebar. Thank you Steve Gallie, for filming, editing and posting the videos. What a gift!

Cindy, Curt, Clarissa, Cayden & Corbin

Corbin shaving Curt
At Tracy & Andy's Wedding

Larry, Debbie, Kelli, Mark & Us