The Black Cloud

Dear Friends & Family,

We came home Tuesday the 5th from a great 4th of July weekend at Lake Nacimiento when the cloud began to form. We didn't see it coming. The weekend included great friends and great memories. We boated, zip lined, indulged in hamburgers and hot dogs and relaxed. I intended to write an update Tuesday night but we got home pretty late and there was a lot of unpacking and mail sorting to do. Anyway, Wednesday night when I was helping Curt roll over in bed, his ribs kind of popped and he spent the rest of the night in excruciating pain; neither of us slept. The next morning Clarissa & I could not get him out of bed because he was in so much pain. We called the hospice nurse and she rushed right over. We gave him some muscle relaxants and anxiety medications and were able to get him into his wheelchair. This was the beginning of the black cloud. The doctor called in some heavy pain medications for Curt's ribs which caused him to spend most of Thursday and Friday sleeping in the recliner. He was feeling better by Friday night just very tired. Saturday he woke around 11:30 and there it was.....the big cloud that had been looming for the last few days. It was resting on both of our shoulders. We were both extremely sad and spent most of the day crying. It seemed as though death was in the room with us. He asked why he has been sleeping so much and if he was dying. It was hard for me to assure him that it was probably just the medications making him sleepy, because, I felt like he was dying also. The thought of Curt gone and me alone was more vivid than ever and I couldn't keep from crying or gain control of my emotions. I don't know for sure what his specific thoughts were but I know partly he feels like a burden and maybe it is time for him to "check out". We spent the afternoon crying together and also separately in different rooms. By evening I knew we had to break this crying cycle and maybe getting out of the house would help.

We drove to Torrance and walked along the Esplanade overlooking the beach. As we walked we would hear bits of people's conversations, kids excited about the sea shells they had collected, a young couple pushing a newborn in a stroller, tourists with accents speaking excitedly. The more we walked the sadder I got. Everyone there had hope, they all have futures, they are making plans and creating memories.  All we have is what.... a couple of months.... a year at best. We stopped walking and sat on the wall and stared out at the ocean. The sky was overcast and the sun was barely visible behind the heavy clouds. But, way out on the horizon the sun was shining. It was bright and gorgeous right out there beyond the clouds and overcast that we were surrounded by. Curt & I spent a long time looking at the horizon. I prayed for that brightness to break through the dark cloud and surround us. I longed for the warmth of the sun. I turned to Curt and told him that he is not a burden. I will do whatever it takes to keep him here and happy for as long as I can. I will continue to find ways to make his life easier and his days as bright as can be. We cried and hugged and walked back to the car knowing that we can do this together.

Well.....actually together with friends and family. We realized we can't do this alone. What this week taught us (or reminded us) is that we need to be busy and to surround ourselves with friends. Friends help shoulder the weight of the black cloud. Sensing our sadness, our wonderful neighbors, Mark & Kelli planned a bbq Sunday night. It was so nice to get out, to laugh and to forget about our sad week. That jump started what has been a great week so far. We have plans each night this week and it is great to have things to look forward to. We are leaving Saturday for Oregon to see my parents who are there for the summer and Corbin who has been there since June 28th. We miss him so much, but he is having a blast!

I haven't said much specifically about Curt's health lately, so here is an update. He is 100% dependant on others. He cannot feed himself, hold a cup, brush his teeth, scratch an itch or step into the shower. Luckily we have an outdoor shower which he can wheel right up to and hold onto the safety bar. He loves his showers and showering outdoors is right up his alley! As of this week he can not walk a few steps to the toilet so he has to use a commode chair. He can not stand up from his wheelchair without assistance. His speech is still slow and sometimes hard to understand but at least he can still communicate at this point. I am no longer comfortable leaving him alone for even a minute. He says his arms feel like lead so it has been difficult for him to drive his power chair. Because of this weakness he has been a little reckless, running into things, so I worry about him crashing into something or the pool. Cayden was able to adjust the control which has helped a bit. Above all the things he can't do, I am thankful that he can still smile. I love his smile and love to see him happy. He still has all his facial expressions and is as handsome as ever.

Today, a film crew from The Muscular Dystrophy Association came to our house to film Curt for the MDA Telethon set to air September 4th. They interviewed us separately and then filmed footage of us and the kids (less Corbin) doing random things. We are not the kind of people who like to be in the spotlight, but we want to support the MDA who has been incredibly helpful to our family and who will hopefully find a cure for this disease someday. I have included a glimpse of the "shoot" today through photos. You'll have to wait until September 4th to see the video!

Once again we want to thank you all for your thoughts and prayers. Thank you for helping to keep the black cloud lifted from our shoulders. Thank you for praying that we can make the most of each day and remain positive. We love you all.

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

Corbin left for Oregon 2 weeks ago. My parents will remain there until September.
We miss them when they are gone! We will be joining them next week!

Thank you Mark & Kelli for a great time!
Lisa, Debbie, Larry, Kelli & Mark

Curt is being prepped for his MDA interview.

Curt and Dennis, the producer

My turn....Yikes!!!. .



Clarissa & Curt looking at scrapbooks while being filmed.



The sunshine made filming a little challenging.



I love how we both have the same look and expression.

The wanted some "lovey dovey" scenes!  OK with me!