A Roller Coaster Ride Thru the Fog

Dear Friends & Family,

After tossing and turning all night, fighting insomnia, I stared at the clock, it was 5:00 am, and I had not fallen asleep yet. Thinking about having to get up in 2 hours I prayed for an angel to come and take Corbin to school. Taking him to Lakewood and then back home takes 45 minutes, there is a lot of neighborhood school traffic to get through, and I was in no shape to be driving. As Cayden was headed out the door on his way to school at 7:15 am, he looked back and said "Mom, do you want me to take Corbin to school this morning?" Wow, Cayden had never offered this before and suddenly I realized he was the answer to my prayer. At first I said "No", because Corbin can not be dropped off until 7:45 at the earliest, therefore it makes Cayden late to Los Al. But as I tried to focus my eyes and he gave me a look of enthusiasm, I changed my mind, sent them off, and happily went back to bed for a bit. God answers prayers!

I wish I had recorded our conversation the other night. Cayden had just put Curt into bed, Clarissa and I laid down on my bed and Cayden sat in Curt's wheelchair at the foot of Curt's bed. We began talking at 9:15, we talked candidly and openly about how much longer Curt would live (Curt began that discussion), different options of speeding up his death, what it would feel like to starve to death or die from not breathing, cremation versus burial, a song Curt would like played at his Service (totally inappropriate song, you won't hear it), sex, sex before marriage, sex after marriage, dating, making significant others feel special, always doing your best, Heaven, cars, trucks, trips, mourning. 3.5 hours later we went to bed. It was one of our many great family discussions, I wish I could remember it all.

There is so much I wish I could remember lately. Sweet things each of the kids say, tender moments here and there, meaningful things Curt says, what we did last week. It is all a fog. More than that it is like riding a roller coaster through the fog. I am trying to see where we are going but nothing is clear, I try to look back but the tracks are invisible, hidden in the fog, I have no idea where we have been. The ups and downs are incredible. Day by day and even hour by hour, the emotional highs and lows make me queasy. The sharp turns from Curt having a great day to a couple of really bad days. Sometimes a rough morning turns into a great afternoon, sometimes it is just rough the entire day.

The kids are asking a lot of questions. Corbin's questions focus mainly around when "it" will happen and if Daddy will still be around for certain upcoming plans. Cayden is focused mainly on sucking all the knowledge he can out of Curt. Questions about trucks, Curt's memories of his teenage years and how things work is mostly what he asks of Curt. Clarissa is about coping "after". What will I do with Curt's clothes, will I sleep with them, what will I do with all my spare time, what she and I will do together.

Curt can't get comfortable. He has no strength to sit up by himself, this morning he said he felt an itch on his back for three hours last night. His eyes burn, his mouth is dry, he's not hungry but when he does eat he struggles to chew and swallow. He enjoys quiet times when he can reflect on his life. He says he has had an amazing life and has done more than many people much older than him. He says it is hard to be him right now, he is tired of not being able to do anything.

The music was playing a bit loud from the bathroom when I went into the bedroom to wake him. It was a Christian song being sung by a choir, I was dressed and ready to leave for work wearing a sunny yellow top. I had gone into the bedroom earlier to wake him and he was completely silent, I couldn't even hear him breathe (normally he breathes audibly), his chest was not moving, his face had a peaceful look on it, almost a bit of a smile. I wondered if this is what he will look like when he passes on, then I panicked because really...his chest was not moving. I put my face close to his mouth and felt his small breaths on my cheek. I paused for a moment and prayed for more time with him. Then I began to try and wake him again, I usually try to be pretty spunky for him so, with the choir singing in the background I said "Good morning honey, you are in heaven, the choir is singing and your angel (me) is here in front of you, time to get up." He would not wake, so I gave him a few more minutes. When I was finally able to wake him, I asked if he thought he was in heaven (jokingly), he said, "No, my legs aren't working." He is so ready to be able to move his arms and legs again; ready to run, to stretch, to scratch, to hug.

Please pray for his comfort. Please pray also for comfort for our friend Andrea Fowler (and 2 daughters) who lost her husband Tim, 34, last week, to spinal cancer after a year of intensive treatments and pain. Andrea has been a great encouragement to me as we emailed each other often about our journeys.

Cindy, Curt, Clarissa, Cayden & Corbin

Wine Tasting and Dinner at Bill & Carolyn Melanson's Home

Tom Lahey - The Mad Scientist

Dear Friends & Family,

This weekend we attended the funeral of Tom Lahey, aka, The Mad Scientist. He was the inventor of Lutimax, a nutraceutical that helped Curt very much with his speech for a time. Tom was a great guy and a friend to all. His products help people with ALS, Parkinson's, Autism, Asthma, Fibromyalgia, Cancer, and countless other diseases. But more than his product, HE helped people. He had a passion for healing, a Degree to back him and a heart full of compassion. He died unexpectedly and alone. The funeral was tough for us; to see someone who helped so many, a father, a husband and a friend....gone....just like that, at the age of 53. The only comfort I have is knowing that he lived his life for Christ and will surely be there to meet Curt in heaven. He was one super cool guy and they will have a blast together! We love you Tom!

The love that surrounds us these days is unmeasurable. I never like to be specific because I feel like I can never name every little thing that was done for us. But here is a glimpse of all we are blessed with since last Wednesday. Girls night "in" at Margie's, Guys night "in" here, Julie made ceramic impressions of Curt's hands so we can always remember his hand print and size, Mark fixed our outdoor lighting, Corbin had friends over for a play date, Cayden got a clean bill of health at the doctor, Clarissa had a weekend full of friends and fun, Corbin spent the night at his best friend Landon's house, lunch with the Drakes, Saturday breakfast delivered by the Gallie Family, Jeff drove us to San Juan Capistrano for Tom's funeral, The Hunters and Coyle's brought dinner and fun over Saturday night, George & Lou Bob fixed our CZ light and did some painting on the garage door frame, Mom and Dad stopped by for a bit and mom did a load of laundry for us, Monday night dinner from the Duvall Family (forgot to take a photo), yum!, a visit from former nurse Janet tonight. Wow! We are so THANKFUL and GRATEFUL for all our friends and all who care and all who are supporting our family through this time. We appreciate ALL of you.

And as always we appreciate your prayers.

Cindy, Curt, Clarissa, Cayden & Corbin

Julie & Curt making ceramic hand impressions

I thought it would be nice to have a photo of Curt not in his wheelchair.
Thanks for bringing dinner Hunters and Coyles! 

The highlight of our night was getting Curt into position for the photo above!

Lou Bob and George, thanks for all your work around the house!
You both mean so much to Curt!

Cayden & Paige hanging out Sunday afternoon.

Papa & Corbin

Grandma & Clarissa have so much fun!

Jessica & Julie stopped by after their walk to say hi!

God is So Good

Dear Friends & Family,

God is so good
God is so good
God is so good
He's so good to me.....

Corbin & I would sing that song at bedtime for many years. Still I sing it, in my head, more than ever. You may wonder how I can sing that song at this point in our lives. The truth is, God is so good to us. He meets our needs by providing peace and comfort. He also provides friends and distractions just when we need them most! Last week we had a constant flow of friends here. It helps so much to take our minds off the sadness that sometimes can overwhelm us. Friends bring laughter, stories and memories that we will always cherish.

Here's a glimpse of our week. And as always, thanks for praying!

Cindy, Curt, Clarissa, Cayden & Corbin

Thank you Gallie Family for dinner (and the birthday cake)! It was fun hanging out with you guys!
And thank you Steve, for setting up this Blog
 and for being available for my Tuesday night panic calls with technical problems!
Mike Casey, Nathan, Jacob, Steve, Julie & Baylee Gallie.

OMG!!! Mike Casey surprised me with a ride in an airplane with his friend Pilot Jeff.
It was so fun! Since it was I surprise, I had no time to stress or freak out about anything.
These cool photos were taken by a camera mounted on the wing.
That's Palos Verdes Pennisula in the photo.

We flew out over the ocean. After a few barrell rolls, we did some loops!
 In this photo we are headed straight down towards the ocean,
you can see Catalina Island in the background! Oh my!

We headed back to Torrance Airport over the Port of Los Angeles.
Oh, and while we were over the ocean, he let me fly the plane for a bit. So fun!

Thanks Pilot Jeff and Mike Casey (not pictured) for a wonderful experience!
I will never forget it!

I walked in my house from the exciting plane ride and expected to see the Popp Family for dinner. Surprise, our house was FULL of friends! What a fun night! I honestly thought we were done with large groups and parties, but what can I say when the men are outside barbequeing yummy steak, chicken and sausage and the women are in the kitchen preparing all the side dishes? It was like old times and one of the greatest days I have had in a long time. Curt too!
Thanks everyone for everything!

Suddenly everyone is wearing glasses (at least the cool people)!

Clarissa's friends hung out with us too!

Steve-O, Don & Darren came by Monday afternoon to visit and have lunch with Curt.
Thanks for the conversation and pizza!

Simple Love - Our Story

Dear Friends & Family,

If you know us, you know our story. If you have been reading this blog for awhile, you know our story. Last summer, my friend asked me to write "our story" for a project she was working on. Here's what I wrote last June although I updated a few things such as the kids ages. I am truly thankful for my life, kids and most of all for Curt. Here's our story again:

I can’t say it was love at first sight. We were 11 years old when we met and love wasn’t the first thing on our minds. It was 6th grade and we were more concerned about hanging out on the bleachers as friends than actually pairing up as boyfriends and girlfriends. Curt was always kind to me as he walked around middle school carrying his PeeChee folder with a mischievous look on his face. He had a ton of friends and was definitely one of the cool guys on campus.

It wasn’t until high school, the summer before our Junior year, that we fell for one another. It was August 4, 1982, and we were 16 years old when our friendship turned into something more. We were at a party, playing quarters at our friend's dining room table, when he began playing with my leg under the table. The night ended with a long kiss next to his VW Bus. That was the beginning of our story and our happily ever after.

Our relationship has always been easy. I think the fact that our parents have been together for a long time helped. We both came from great families and had happy childhoods. We grew up in the same city, blocks apart. We knew the same people and came from the same backgrounds. His family attended church, went on camping trips and kept in close contact with grandparents and extended family; as did my family. Our dads both worked hard but always found time for family fun. Our moms both stayed home in our early years and then worked as we got older. In our early years our homes were modest, but nice and all our needs were met.

After high school graduation I left home and Curt to attend college in Texas. We agreed to break up and see other people while we were apart. Although we each dated others; my monthly visits home were spent with each other exclusively. The college was a two year junior college, so I was home in no time. It was then (when I returned from college in May 1986) that I truly believed that Curt was the one for me. Then in September, on the way home from a fun night dancing at Black Angus, he asked me, “Would you want to marry me?” I thought he was talking about the future, like sometime in the future, would you want to marry me? So I said “yes.” The next day he called to ask if I remembered what he asked the night before. He came over to my parents house and we walked across the street to Entradero Park and we sat on the bench swing and talked about our future. It was then and there that we committed our lives to each other.

We were married on June 4, 1988 in front of over 300 friends and family. By then we had been together close to 6 years. Although we were happy with trips to the river, motorcycle riding in the desert and hosting lots of parties, we were excited to begin a family. Clarissa was born March 4, 1993. For some reason we were thinking I was carrying a boy, so we were surprised when the doctor said “It’s a Girl!” We jumped right in to parenthood, sharing duties, and loving on her all the time. When she was three weeks old we traveled in our camper to the California Gold Country, following my parents on a 2 week trip. We continued that pace of travel and activity throughout our lives. Cayden was born on February 8, 1995, we were excited to have a boy and to see Clarissa interact with a new baby! That same year, in December Curt’s dad died suddenly of a heart attack. It was a sad time for all of us.

Although we were happy with our little family, we thought it would be nice to maybe have one more child. Since we had to undergo fertility treatments for the first two children we figured it would take some time to conceive #3. We were excited to get pregnant without fertility treatments on the first try; Corbin was born on September 3, 1999. Our family was complete!

When the kids were young we spent many weekends away from home. We traveled in our motorhome to the desert and rode motorcycles most weekends in the winter, while summers were spent at Lake Nacimiento, waterskiing. When Clarissa was young, if ever we were home on a weekend, she would stand at the door and say “go”. We called her our “go baby”. Still today, she loves to GO! All the kids still enjoy traveling to the desert, lake or anywhere.

We have truly lived a fairy tale life. Honestly, we have hardly ever fought or argued about anything. Curt has an easy going attitude and just makes everything do-able. We have both worked for over 25 years at the same job, we manage our money well and we make time for family and friends. We attend church, volunteer and support our children in their activities.

We love our kids so much! Dinnertime is always full of conversation and laughter. The kids talk to us about everything (it seems), we love that they feel safe confiding in us. They are all super smart, not only in school but in life. They know and appreciate the things they have, they respect us and each other. Clarissa (18) is a planner, she loves planning trips and activities with her friends. She is outgoing, organized, creative, a great people person, has amazing intuition and is beautiful! Cayden (16) is a hard worker who loves to fix things. He is an accomplished videographer and editor, and keeps busy with friends, activities and customizing his truck. Corbin (12) is funny and sweet. He has the biggest heart and loves to help people. He plays football and likes to ride dirt bikes and wakeboard with Clarissa and Cayden. We all love spending time together as a family.

Sadly, our ‘happily ever after’ is coming to an end. In November of 2009, Curt was diagnosed with Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease. There is no cure for this devastating disease and the life expectancy is 2-5 years. Since his diagnosis, he can no longer walk, use his hands, dress or feed himself. The disease is also robbing him of his ability to speak. In the end he will lose the use of all of his muscles including his breathing muscles. Through it all Curt has been amazing. He has kept a positive attitude and still tries to make the most of each day. He teaches us so much each day; about how things work, about how to treat others but most of all how to love. He shows his love in simple ways. Before the disease took over his body he would put toothpaste on my toothbrush, wash my car, run errands and shop for the family. He saw what needed to be done and would do it out of love.

Our relationship began as a friendship and today more than ever we are friends. Our love is built on a simple foundation of wanting to put the other one first. We save the best of what we have for each other. It's not about fancy vacations or expensive gifts; our love is simply caring for one another.

to be continued......

I had a great birthday week with lots of celebrations with our amazing friends. As you will see in the photos Curt looks great as usual. But I feel I should update you all on his physical health. Since he was diagnosed the disease has not taken a break from the devastation it is performing in his body. At this point, he can no longer stand unassisted or support his own weight. He slumps in his wheelchair and needs to be constantly set back up because his trunk muscles are deteriorating. He gets uncomfortable trying to sit up all day in his wheelchair so he goes to bed early. We have to place his two right fingers on his wheelchair control in order for him to drive it, and they don't work very well. I just ordered him a reclining manual wheelchair because I am not sure how much longer he will be able to operate his power wheelchair. He has just about zero use of his arms and hands.  Pain medications, muscle relaxers and anti-anxiety meds help him sleep through the night. He prefers to eat softer foods and we feed him small bites as he tends to be choking more. He often chokes on water and his saliva.His speech is thick and hard to comprehend especially when he is tired. His legs "jump" all the time, we are always repositioning them so the jumping and shaking will stop. Sometimes his legs get stiff and will not bend, we have to work with them slowly to get them to relax.

Our activities and outings have slowed down a lot. Riding in the mini van has become difficult; he bounces a lot and even with his seat belt firmly tightened, he still seems to slump and get uncomfortable. Loud places are hard for him, he can not communicate well. Crowded places are difficult as he can barely maneuver around and through people and tight places. He gets tired easily so we stick close to home so he can go to bed when he needs to.

As always, his attitude is amazing! He still smiles, laughs, sun tans, and cares. He loves the visits he gets from friends along with Jacki's haircuts, his mom's scalp massages, walks, cocktails with the guys, comedy shows on tv, music and the smell of coffee. He watches the birds outside, the scrolling photos on the computer screen saver, and the people coming and going. Tonight he was in Clarissa's room, she was not home, he was just taking it all in, her photos and memorabilia. Later he and Corbin had all of Curt's jewelry and mementos spread across the bathroom counter as they talked about each piece one by one.

Sometimes it is too much for me, right now, watching him decline, watching him struggle, everyday, every moment, it is breaking my already damaged and weak heart. It is more than any family or any man should ever have to bear. Pray on...

Cindy, Curt, Clarissa, Cayden & Corbin

My friend Michelle took me to lunch for my birthday on Thursday.
We didn't take a photo, but I had to include her on tonight's blog, she has been such a support to me.
 She is a great listener and voice of reason! And my friend since elementary school!
This photo was taken at Curt's 40th Birthday Party in 2006!
Mark, Kelli, Larry & Debbie surprised us with dinner at our favorite restaurant - The Bottle Inn.
We even sat in the wine cellar! Thanks for a great night!

Friday lunch with Evyn, Carolyn, Jaime, Bill, Rae Lynn and Lisa.
Pete's Cafe, downtown Los Angeles.
Thanks girls (and Bill) it was super fun!

Dinner at Claim Jumper!

Paige & Cayden's Winter Formal

Paige is the sweetest girl ever! They had a great night at Winter Formal!

Birthday Celebration with Jim (our birthdays are a day apart)
at Acapulco Inn.
Jim, Steve, Shelley, Janet, Steve-O, Colleen

The Gift of ALS

Dear Friends & Family,

If you see someone surrounded by friends, immersed in their family and cherishing the little things in life like the warm sun on their face or a beautiful sunset, they may have ALS. This disease is a gift in a way. We are lucky to be able to spend this time surrounded by people who truly care. Each moment is precious and everyone around us knows that. When we are with friends our laughs are real, our tears are genuine and our connections are deep. Knowing that your time with friends is limited makes each moment that much more special. We are deeply moved by those who choose to surround us at what could be such a sad time. We could let this disease rule our lives and alienate us from seeing people and going places. But, honestly, we haven't had time to let the disease take over our lives, we have too many friends and too many plans.

It has been great to be home with Curt and not have to go to into work over the holidays. We shared many laughs, thoughts, walks and visits with friends. We appreciate all that life has to offer and all that we have. We are blessed beyond belief and we will not let ALS define us. Meanwhile we will cherish the time we have left and savor each moment.

Thank you for your prayers and support. Please keep praying for a miracle.

Cindy, Curt, Clarissa, Cayden & Corbin

Corbin went motorcycle riding for the weekend with Jim & Colleen.
He had a great time. This photo was taken in the little town of Randsburg.
Clarissa & Lauren, ready for New Year's Eve!

Paul & Bill were able to get Curt into the front seat of Bill's Jeep for some off-roading around Acton!
He had a great time with the guys!

Just like the old days!

We had a great time at The Popp's house with Bill & Rae Lynn and kids and dogs!
Thanks Paul & Lisa!