Across The Room

Dear Friends & Family,

From across the room I can feel him. Although he is talking to others, I feel he is watching me. Not literally watching me, just kind of watching with one eye (if that makes sense). I am also watching him, more like feeling him; feeling his presence, his energy, hearing his voice and laughter. I feel that from across the room he is supporting me. He knows what I am saying. He admires me as I am. He gives me confidence, makes me feel smart and validates me. When I need him, he is always there to chime in with a fact (name, date, type of car) whatever it is I forgot. Between the two of us we can usually remember the complete story; otherwise I always forget an important detail.

Friday night we were at a party at the Drake’s house. Curt was sitting across the patio from me in conversation with somebody else. As I looked up at him, he was looking at me. He gave me that ever so slight smile. That’s where the confidence thing begins with me. It is kind of hard to explain, but when he looks at me, I feel like I am in the right place, with the right people, saying the right things.

For a moment that night, I got lost in thought of the future. Wondering what it would be like without him across the room. What would I do without him, how would I feel, did my jewelry match, was I wearing the right shoes? Would I even go to a party without him? What would I talk about? How would I feel surrounded by all these couples who have been happily married for many years? How would I feel without my best friend? I cannot imagine myself without Curt by my side (or across the room). As I was deep in thought, Rae Lynn snapped me back to reality with her “Hey Cindy, right here, come on now”. I can always count on my friends to keep me in the moment (which is where I prefer to be). It is way too painful to think about a future which is out of my control. I have no idea what lies ahead and can’t even begin to imagine how it will feel to be alone. For now, I just try to keep breathing as the pain crushes my stomach and my heart.

We had a great time in Las Vegas on Sunday. On the way there Hwy 15 North near Victorville was closed due to an accident. We took Stoddard Springs Road which turned into a dirt desert road. We sped down the 20 mile road blasting Garth Brooks, stirring up a big old dust cloud behind us and laughing with the kids all the way. This crazy detour was one of the highlights of our trip. The people who took the regular Cal-Trans highway detour really missed out! Another highlight was our awesome rooms at the Wynn Hotel. We were on the 25th floor overlooking Treasure Island and their famous pirate show. We spent a lot of the night looking out our floor to ceiling windows at the amazing Vegas skyline.

The Garth Brooks Concert was great! He is an amazing entertainer, story teller and guitarist. It was fun sitting together as a family and being entertained.

We took turns pushing Curt around the hotel in his manual wheelchair. Although he got a lot of stares, he had a good attitude and even asked another person in a wheelchair if they wanted to race. I know it was hard on him to accept that he couldn’t walk through the huge hotel and had no choice but to use the wheelchair. The distance he can walk is getting shorter each day. One positive thing I have noticed over the last few weeks is that the deterioration of his speech has stabilized. There for awhile he would really struggle to talk if he was tired or had a few drinks. Now although his speech is a bit slow, it seems stable throughout the day. Maybe it was the stem cell treatment? Now if we could just get his legs stabilized!

We are looking forward to spending the 4th of July Weekend at Lake Nacimiento. It will be just us, the kids and their friends. We are excited about boating and having fun in the sun!

We love our friends and family and appreciate your prayers.

Love,

Cindy, Curt, Clarissa, Cayden & Corbin

Welcome to Our New Website!

Dear Friends & Family,

I sent my first email about Curt's condition in November of 2009. Since then we have had many people contact us and ask to be added to the "Update List". Along with those requests many people pass the Updates to their friends & families. Our friend Melissa has been encouraging me for months to create a blog so more people could read our story. Although it seemed like a good idea, I didn't know where to begin. Then our friend Steve Gallie asked if he could create a website for us. After many hours of hard work, here it is. Thank you Steve!

 

YAY, school is out and summer is here! I came home from work yesterday to find the pool full of kids splashing and laughing! Friday night we celebrated "school's out" with a BBQ and swim party. Saturday we celebrated a great year of Club Volleyball with Clarissa's team and parents at our house for lunch and swimming. Sunday was of course, Father's Day. After church and then lunch at Northwood's Inn, we came home to relax by the pool. It was nice to just be together as a family. We spent the evening watching Video Yearbooks from the kid's schools.  Monday night we enjoyed a delicious dinner with Steve, Anne, Samantha & Cassie Schmidt. Steve & I (and Curt) have known each other through work for 27 years. This was the first time our families have met and it was fun getting to know one another. Thank you Schmidt Family for caring so much about our family, you guys are a great family!

Saturday we are heading to Las Vegas to see Garth Brooks in concert. The kids grew up listening to Garth Brooks with us, so I thought it would be a good family concert and a great time to get away. We are looking forward to seeing the sights of Vegas and hanging by the pool.

We are trying to keep our attitudes positive and remain strong even though the ALS monster is getting bigger and scarier. It seems to be staring us right in the face and it is hard to look around it. I have been dealing with Medicare issues, wheelchair issues, looking for a way to transport the wheelchair and what our future needs are going to be both in and out of the home. It has been very hard on both of us emotionally to be forced to think about the future. It is really wearing on us. The good news is, we don't have time to be down because there is always a party or event in a couple of hours. We have been non-stop for the last week, which has helped ease the pain we are going through.

Oops, I wanted this update to be happy and cheerful in honor of our new amazing website. You will notice all the old updates are listed along with stories and photos from the kids. You can also leave comments (which we love to read) on any of the stories. Once again, thank you Steve Gallie for doing this for our family.

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

Every Moment is A Memory

Dear Friends & Family,

Quite often we are asked, “How do you get through the day, how are you keeping yourselves together and how are you so strong?” In dealing with ALS, we choose to create happy memories full of fun, friends and good times. We could be sitting around feeling sorry for ourselves and thinking about what will come. Tonight Corbin said, “We can’t predict the future, only God knows the future. Don’t worry about what might happen because it might not happen.” We couldn't have said it better.

He also said, “Every moment is a memory”. Isn’t that incredible coming from a 10 year old? Everyone should live their lives based on that simple fact; every moment is a memory. Wouldn’t that make you strive to make every moment a great moment?

We had some great moments this weekend. I had fun with my girlfriends in Big Bear. We have a great story about our trip there which took 6 hours instead of 1.5. We followed Lisa’s GPS which took us on a shortcut to her cabin. We ended up on a dirt road where it took 2.5 hours to go 6 miles. We had to clear rocks off of the road to get through. Meanwhile it was getting late and we weren’t sure that the road would go through. It was quite an adventure which took my mind off my situation at home for the entire time. We finally made it to the cabin and wound down with some great wine and lots of girl talk. Thanks girls for the great memories and great stories.

The guys all came over Saturday night to hang out with Curt. Not much is being said, they are not sharing the details, so I assume they had a great time.

Tonight, our friend Steve Gallie came over to videotape our family. We all sat together as he asked each of us questions about our family life. It will be fun to watch down the road. This is where Corbin’s quotes came from. He was very into the video and talked a lot. Thank you Steve for doing this for our family. Steve is also setting up a blog/website for Curt. Beginning next week, I will post my updates on the blog. I will send you the link next week.

This is the last week of school for the kids. Clarissa & Cayden are studying for finals and are confident they will do well. Corbin is counting down to the last day. Everyone is busy making plans for summer.

Cayden decided he would like Curt’s truck when he gets his license in February. They have been busy customizing it with new door handles, exhaust, new stereo and whatever else can be added. They are having fun together and Cayden is learning how to shop for and install everything. Curt is a great teacher.

Curt’s spirits remain upbeat as his body gets weaker by the day. He is amazing! Thank you for continuing to pray.

Make each moment a great moment!

Love,

Cindy, Curt, Clarissa(17), Cayden(15) & Corbin(10)

Jacki's Story

Dear Friends & Family,

Curt had the perfect childhood! He was raised by great parents who were active with him and his 4 siblings. They all played sports, went to church, camped and enjoyed the beach as a family. They ate dinners together and the kids all played outside in the evenings "until the streetlights came on". He lived on Ingrum Way in Torrance from the day he was born until the day we were married. On Ingrum Way he lived next door to the Dunnigan's who had 6 girls. Jacki and Curt were the same age. Jacki has been a great friend to Curt (and me) throughout the years. She responded to one of my Updates with this sweet letter of her memories growing up next door to Curt. I asked her if I could share it with you all, as it really touched Curt, and she agreed.


Hey Curt and Cindy,

Your messages touch my heart every time.

I think about being kids on Ingrum Way and what a cool street it seem to be. 60 Kids lived on that street when we were growing up. That's incredible! We have about 20 on our block now. It didn't matter that between us, you and the Roquemores there were 16 between the three houses. There was always something happening.

I remember my dad always in the garage working on the cars and you coming over to borrow tools. Being that there was six girls in the family I know my dad loved it when you came over. He so appreciated you. Later on in life he commented that you where all boy and thought if he had had one he'd hoped he 'd be like you. you where always busy! I remember you bike riding and flying off curbs and roller bladen' everywhere. Then came the mini bikes and motercycles reveving the engines and races up and down the street. Soon came the Baja bug w/ the foot pedal(so cool). Thanks for teaching me to drive a stick shift. You and the guys always working on it, but that's what guys did. Remember us talking about Bill and Vicki, wondering what was in the water that year (: (Oh did i tell you i married a 1963er-AAhhhhh!) life is funny that way. How bout Bill driving home with no brakes and hitting the curbs to stop ,was it a blue Camero?. I remember playing poison with Bill and Mike in your driveway. And watching them play homerun derby. Life was pretty cool back then and easy.

I remember your dad. I don't think i ever talked to him but i always thought he was handsome. He would stand in the front of the house with his leg up on the planter smoking a cigarette and if anyone of us girls came out he always gave us a nod and a wink, always acknowledging our presence. Oh! and on the weekends dressed to spend the day at the ball field umpiring.

Living in the neighborhood we did, there are so many people that are just in our lives. I'm blessed to have you as one of those people as corny as it sounds. I'm sad you have to go through what is happening to you and the family.

The day of your party i didn't know about your condition and in not knowing i was so overwhelmed with the love i felt from that room. The positive energy, memories, the smiles,hugs and the thought that you and your family have touched so many lives. One blessing you can take from this is you get to see and feel first had hand the lives and hearts you've touched. For most of us we only hope we make a difference and will not have that opportunity. You can say"I HAVE MADE A DIFFERENCE!"

I hope your having a good day and these memories bring a smile to your face.

Love and prayers,

Jacki


Thank you Jacki for sharing your memories and for caring so deeply, you are a true friend!

We had a nice time in Palm Springs for our Anniversary last week. Curt was really struggling to walk, so it was different adjusting from our previously active lifestyle. Normally we would have gone to the street fair and lots of shopping (my favorite thing to do in Palm Springs). This time we stuck close to the hotel; we watched a movie in the room and hung out by the pool. It made me sad that we couldn't do much, but I tried to focus on the fact that we were together in such a nice place.

This Saturday, I am going to Big Bear with 7 of my girlfriends for the night. The guys are staying home and promised to "take care of" Curt. I know we will each have a great time with our great friends.

Today, Curt was fitted for a powerchair. He said it was hard discussing all the options and what he may need on the chair as his disease progresses. He has chosen to not look too far into the future, but today he was forced to. I was at work and not home for the appointment; I didn't know this would all be discussed. I am sorry I was not with him and he had to deal with this all alone. Once again, please pray for him as he faces the progression of the disease and all the decisions that will need to be made. He is so brave in the face of what's to come.

Please pray for the kids, there have been a few events this week that have caused the kids to see what lies ahead for them. They are hurting and sad. The Dad they have always known is changing into something they are not used to. They are watching him struggle to walk, talk and eat. They see him fall often. They see him struggle more and more to prepare their lunches each day (which he insists on doing himself). We all try to laugh it off, but it really hurts inside. To watch their Dad waste away day by day is honestly the worst thing a child or anyone should have to go through.

We love you all and need you all, now more than ever.

Love,

Cindy, Curt, Clarissa, Cayden & Corbin

ALS Top 10

Dear Friends & Family,

Although this is the most horrific and painful experience any family could go through, we have to find the bright side of our situation. Here's our Top 10:

10. Party time! These days we use any excuse for a party or get together!

9. No time to procrastinate. Just do it! Get it done!

8. Prioritizing is easier. We pass on what's not important. Curt only has so much energy, so we pick and choose what we spend our time on.

7. Handicap Parking Placard. It is nice to have front row parking; that way Curt can save his energy for what's important.

6. The Gift of Time. We are able to plan and get organized for the future. Curt has been organizing his tools and such and teaching us all how things work around here.

5. Disability Checks. After over 25 years of steady employment, it is nice to get a check in the mail every two weeks for doing nothing.

4. Monday Meals. It is amazing to see people take time from their lives to provide us with meals. We are really enjoying the meals and it takes a lot of pressure off of our family.

3. Enhanced Senses. Sunsets are more magnificent, full moons are brighter, crashing waves are more thunderous, food in the oven smells tastier, and hugs last a little longer.

2. Being with our kids. Our time together is more meaningful than ever. It is like watching a movie in slow motion. Each interaction is more cherished. We love being together!

1. Friendships. Our friendships have become deep. We are all fighting this disease and traveling this road together. We have never felt closer to our friends than we do now.

There it is, the ALS Top 10. Hope it brings some inspiration to you and yours.

Last week I mentioned that Curt was getting fitted for a walker. The doctors decided that he needed power chair (wheelchair) instead. They gave him a cane to use until the power chair arrives. He walks great with a cane, much more stable, but he is not ready to use it in public yet. What can I say.....canes are not something a 44 year-old should have to deal with. We will see what happens. Thanks for continuing to pray for Curt and all he is going through.

Our weekend at Lake Nacimiento was great. Perfect weather and good friends enjoying the lake. Thank you Jim for all your help with the boat, dock, ropes, tubes, wake-boards, coolers and everything else. Thank you Bill Z, Bill M, Bernie, Colleen, Carolyn, Bart, Mom & Dad for all your help during the weekend and in preparation of the weekend. Although it was hard for Curt to watch (and not be a part of) all the action, he enjoyed being at the lake, driving the boat and soaking up the sun. We hope that there will be more trips this summer. Thank you to all our "Lake Friends" for stopping in to say hi and to check on Curt. We are very touched that you all care so much and are so willing to offer your help.

Curt & I are looking forward to spending this Thursday & Friday in Palm Springs for our 22nd Year Anniversary! Thank you Melanson Family for your generous gift of a room at the luxurious Westin! We can't wait to relax in the Palm Springs sun and just "be" together!

I have a special request of all Curt's friends. As Curt was getting into the boat this weekend, his phone fell out of his pocket and to the bottom of Lake Nacimiento. He was upset to lose everyone's phone numbers. He got a new phone today, but has no numbers. Please give him a call this week so he can add your number to his phone. Thanks!

Please pray for strength for Curt. He gets tired so quickly. There is so much he wants to do, but his body won't let him. He has never been one to sit around, but he is coping. We are thankful for all the prayer warriors who pray for his needs.

Love,

Cindy, Curt, Clarissa, Cayden & Corbin