My Ken Doll

Dear Friends & Family,

A few weeks ago, as we were closing up the house to leave for the weekend, I was reminded of a childhood memory. When I was young, before each family trip, I would take out a large chalkboard from under my bed and with my clearest and best penmanship I would write in chalk, Smile God Loves You, and then draw a happy face underneath the words. I would prop the chalkboard against my bed where it sat prominently displayed in the center of my room. For some reason I had a fear of someone breaking into our house and stealing all of our belongings. I believed that if a burglar broke in, he would see the sign and either repent or retreat, but either way he would leave my room and my Barbie collection untouched. Honestly, I think my Barbie collection meant more to me during those years than anything else in life.

Last night as I was rolling Curt over in bed, it came to me that in a way he is like a Ken doll (Barbie’s boyfriend). Just like a Ken doll, he is totally dependent on others for every single move. In order to roll Curt over in bed, I have to move the sheets and blanket, grab his left shoulder and pull him towards me, then I move his right arm out from under his body, fluff and move his pillow back under his head, grab his legs, one at a time, bend them at the knee while pulling them into a comfortable angle, place a pillow behind his back and cover him with the sheets and blanket. In the morning he needs someone to lift him out of bed and into his wheelchair, someone to brush his teeth, comb his hair, shave him, dress him, place his pills in his mouth, feed him, etc. As the day goes on so does his needs. At night, the bedtime routine begins, it involves changing his clothes, brushing his teeth, more pills, lifting him into bed, placing special boots on his feet to prevent sores and making him comfortable in bed. Just as I would dress my dolls and move them through their imaginary is the same with Curt. And just like my Barbie doll collection Curt means more to me than anything else in life.

It amazes me to think that one year ago he was walking, driving and taking care of himself. Curt and I knew it would come to this point but didn’t know how we would deal with his limitations and didn’t even want to think about it at that time. I know it is as hard on him to be dependent as it is for me to have to take care of his every need. Although I get relief from constant care-giving thanks to his mom who comes four days a week to take care of him, he never gets a break from needing every itch scratched and help with every move. In the past, Curt was always the person who did everything for everyone, now there is not much he can do for himself let alone anyone else. The kids are amazing in helping care for Curt; Clarissa is sweet to feed him meals and make his mixed drinks just the way he likes them, Cayden accompanies and assists Curt in public restrooms and lifts him into bed each night. Corbin is concerned about Curt’s comfort and always offers to bring him a jacket or his Ugg boots when it is cold. Friends and neighbors stop in and have no problem getting him food or drinks, or helping us get him out of the pool or up off the floor if he falls. The support shown by everyone to Curt is amazing! We have a cross-stitch sampler I made in college hanging in our bedroom which says, “Give to the world the best you have and the best will come back to you.” We are truly blessed with the best friends and family!

Cindy, Curt, Clarissa, Cayden & Corbin
The Bottle Inn with Ed & Julie

Having some pool fun!
I always take a picture of the kids on their first day of school.
Here Clarissa is leaving for her first day at CSULB.
Curt & Julie having fun!
Garage Party!
Mark, Larry & Julie

What More Can I Say?

Dear Friends & Family,

I have been pretty consistent about posting updates on Tuesday nights....until the last couple of weeks.  A few people asked me today, when am I going to post? Honestly, what more can I say. Curt's health is declining, as it has since his diagnosis, a little more each day. Each day, there is less and less he can do physically and all the while we go on smiling behind our aching and broken hearts. I don't know how much longer I can smile to the world when all I want to do is cry.

This disease is horrible and inhumane. It is not fair that he can not scratch his own itches or re-position himself or take care of his bathroom needs. It is not fair that I have to take care of my 45 year old husband as if he was a 90 year old man. It is not fair that our kids have to watch their Dad's strength and speech diminish each day. It is not fair that a man who has done nothing but good his entire life, has to be fed by others. It is not fair that I have to fight the daily pain of Fibromyalgia while physically maneuvering Curt around throughout the day. Nothing is fair, nothing is easy, everything sucks.

We have many things to be thankful for. Countless friends. Curt's mom, Barbara, who comes over four days a week and cares for Curt, while I work. Hospice nurses, bath aides, prescriptions for pain relief and sleep. Financial security. Answered prayers (more on that later). Employees who pick up the slack when I am unable to function at work. Time to be together as a family. A comfortable home. Neighbors who bring us meals. Neighbors who offer to help when they see me working outside, or ones who come over unexpectedly and hose our yard or clean our garage. Friends who offer help and support. Friends who send inspiring notes and books and flowers to brighten our day. Yes, we have soooo much to be thankful for.

On a few of my posts I have asked for specific prayers and they have been answered. Last week we were struggling with communication, I asked for prayer, and things have gotten much better between Curt & I and the challenge to communicate as he is struggling to speak. So I will continue to ask specifically.  Now more than ever, Clarissa needs friends she can depend on, cry with, and just have fun with. She is a planner and likes to have a full schedule. Many of her friends have gone off to college while others have become undependable and aloof. Please pray that Clarissa can find forever friends. Friends who understand her current struggle and who can be supportive, encouraging and real. Thank you for praying for Clarissa, my heart has been breaking for her.

Last week our schedule was pretty open to begin with, but before we knew it, BAM!  Here is a glimpse of our week!

Cindy, Curt, Clarissa, Cayden & Corbin

Tuesday Night
Friday Friends Forever!
After pedis at our favorite salon, we stopped by the Park, where our friendship blossomed years ago (on Fridays), to toast and say goodbye to Lynn who is moving to New Jersey.
Bottom: Jaime, Carolyn, Lynn, RaeLynn
Top: Lisa, Lori, Me, Margie, Julie

We will all miss you so much!

At La Tavolata (Clarissa's restaurant) we continued our goodbyes to Lynn
 while also celebrating Julie's birthday.

Curt had Clarissa take roses to leave on the table for each of the women. He is so thoughtful!
Clarissa served us, I wish she could have joined us instead!

Thursday Night
A spontaneous dinner with Mark & Kelli...... La Tavolata
Friday Night
Dinner for 6 instantly turned to dinner for 12 and here we were at La Tavolata again!!

Saturday Night
We had a blast as guests of Mike and Cindy (our high school friend) and their daughter
 Jennifer Detlefsen at the Orange County Speedway motorcycle races.

We saw our old friend Byrd (in background) who was there to promote the Harley Sidecar he and his team built. Corbin loved watching the sidecars race.
Thanks Detlefsen Family for having us as your guests.
We felt special sharing the front row box seats with you guys!

Jim & Colleen came for a visit, they brought tons of munchies and Jim bbq'd tri tip!
We all had a relaxing Sunday evening! And Krystal too!

Chloe, Corbin & Paige swam for about 4 hours and then settled down in the garage for some tv time.

Tuesday Night
Jim McGhee (center), came to visit with a bottle of wine. Our neighbor Gary (left, with wife Joyce) was a long time friend of his. As they were reminiscing, Steve Gallie and family popped in for a visit
 We love these spontaneous gatherings!

Earlier Tonight
Our interior decorator and friend Wendy, gave us this sign. She has really figured us out!
Curt met Larry in the street holding it on his lap and soon we were blessed with another "gathering"!

Fear of Falling

Dear Friends & Family,

I was 21 years old when 18 month old Baby Jessica fell 22 feet down an 8 inch wide abandoned well and spent two and a half days trapped beneath the surface of the earth. Like so many people, I too, was captivated by the rescue efforts and race against time. While hundreds of rescuers and well wishers gathered above ground planning, praying, crying and hoping; Baby Jessica remained below ground, alone, singing Winnie The Pooh songs.

Forced to face my fear of the unavoidable
steel grates in Chicago.

Maybe that is when my fear of falling began. In most cases I am a calm and reasonable person and allow my children (and Curt) plenty of freedom to roam. But I become “psycho-mom” whenever we are near a cliff, a high balcony, a rooftop, the top of a waterfall, and most of all when we are near those see-thru steel grates in the city that cover drainage pipes throughout parking lots and sidewalks (see photo). I freak out if anyone in my family nears any of the above. I don’t want them to fall and be swallowed by the earth. Mostly, I don’t want to have to jump in after them to save them.

Just this month a Texas man fell into a 30 foot well while out for a walk. He was found two days later, with multiple snake bites, barely alive. You gotta believe I shared this story with my family. “See, I am not kidding, you guys have to be careful out there,” I warned. They laughed and rolled their eyes at me. When Curt was about 11 years old, he jumped into a man-hole (a drain pipe beneath the ground) at Tordondo Little League Field. He was alone and no one knew where he was. After he jumped in he realized there was no way out, no stairs and no sides on the vertical pipe. He was deep beneath the ground and spent hours gathering leaves, sticks and debris from the horizontal part of the pipe which led miles to the ocean, in order to make a pile high enough to help him reach the opening of the pipe. He said he was never afraid, he just remained calm and did what needed to be done to get out.

As the ALS in Curt’s body progresses, my fear of falling gets stronger. I wish I had the strength to remain calm. Instead, I feel like if we keep moving we won’t fall. I feel that if we were to fall, we would never have the strength to get back up. I tell myself, don’t give in to the disease, don’t acknowledge it, don’t accept it, don’t slow down. Go, go, go. Run from the thoughts of what is happening to Curt, stay away from the edge of dark emotions trying to pull us down, keep away from the fear of raising a family alone, watch out for the hole that is right in front of us, crumbling at our feet, trying to sink us all into hopelessness.

The Lord is my strength and my song; he is my salvation. He is my God, and I will praise him.
Exodus 15:2

Please pray for our emotional and physical connection as communication is diminishing between us. Also, a little rest would be nice.

Cindy, Curt, Clarissa, Cayden & Corbin

The last two weeks have been super fun! We hosted our family reunion, caught up with friends and went to Lake Nacimiento for the weekend.

I think the highlight of our family reunion was surf lessons at Seal Beach!

Everyone enjoyed Disneyland!

 Hanging out by the pool was nice and relaxing!

Curt's favorite family tradition - homemade escargot. 
Steve-o stopped by for a visit!  

Ashley's (left) baby shower! Can't wait to see baby girl in October!

Lunch at Farmer's Market and Shopping at The Grove

Clarissa & Ashley at The Grove

Dinner at La Tavolata with Jim & Colleen....

...and cousins Dominic & Ethan, & Paige & Chloe

Corbin had a blast at the Dodger game with Larry. Thanks Larry!

On our way to Lake Nacimiento for the weekend we stopped by Lake Cachuma to visit with Curt's mom Barbara, brother Bill, sister in law Sharon, sister Beverly and nephew Jonathon.

Alan, Cayden & Beau

Lake Nacimeinto with Debbie, Jessica & Kelli!

Alan, Cayden, Corbin & Beau!

Larry, Mike, Curt & Mark!
Not pictured...My parents, Jim & Celia
Thanks for a great weekend!

Protective Veil

Dear Friends & Family,

The mosquito planted himself on Curt's leg and just sucked away at his blood and there was nothing Curt could do to get him off. A few days later a bumble bee landed on Curt's bare shoulder and once again Curt just sat steady until he could get my attention to shoo it away. Awhile back, Curt got a sinus infection and was unable to blow his nose, get comfortable in bed or control his constant sneezing. It doesn't seem fair that things happen to him, isn't he already suffering enough?

Lately I have been suffering from insomnia. Sleepless nights lead to anxiety filled days where my energy and emotions are short and raw (which I keep hidden beneath my smile for Curt). I would love to be guaranteed protection from insomnia, while we are at it, throw in protection from plumbing problems, dead rats in our woodpile, friends moving away, car troubles and the endless list of things that need to be done or fixed around here. I would love for Clarissa to have protection from friendship troubles and Cayden to be able to continue work and play without getting too overwhelmed when I need him to do things around the house. I would love for Corbin to have a healthy outlet for his emotions.

Asking for things is not my style. I try to keep up with our commitments and do what needs to be done without asking for help. I normally concentrate on the positive things in our lives and am always thankful that we are so blessed.  But, it seems like lately we are trudging through mud. Going nowhere fast. Two steps forward three steps back. You know all the sayings. I was just thinking that if we had a protective veil around our family (although that seems like a greedy thought) life for us would be so much easier. Right now is when we (I) need it. Things have never been tougher. Curt has never needed so much physical help. I have never been so tired. Our emotions have never been so raw.  Life has never been so hard.

Thank you for caring and praying.

Cindy, Curt, Clarissa, Cayden & Corbin