Learning to Practice Patience

Dear Friends & Family,

In early 1991 we became pregnant for the first time. Curt & I were so excited. We had been looking forward to beginning a family since we were married in 1988. Our excitement could not be contained, and although we had been warned by people to wait until we were further along to announce the pregnancy; we didn’t listen. We wanted to shout it from the rooftops “We’re having a baby!” Seriously; it was all we could do to make it more than a few minutes without speaking of our excitement of having a baby. Well, sadly we had a miscarriage. It was a tough ordeal, even more so when we discovered I was carrying twins and lost them both. Although I was only 7 weeks along we had told sooo many people about our pregnancy. One of the hardest things for us was figuring how we were going to tell the sad news to the zillions of friends and family that we were no longer expecting. Our great friend George Kudo was kind to make many calls for us and spread the news so we would not have to. We received tremendous support from everyone which helped us deal with the loss. It seemed like forever, but in June of 1992, we were blessed with another pregnancy. As much as we wanted to make it to twelve or at least eight weeks before we told people, once again we could not contain our excitement and shared the news with everyone we knew. In March of 1993, Clarissa was born and there was no looking back! What we went through back then made us strong, taught us to reach out to our friends and family, and brought us closer than ever before.

Last Tuesday after receiving hope again, we could not contain our excitement. Seeing Curt’s speech improve right before my eyes was a miracle. We went to bed that night with hope for a future again. Wednesday, Thursday and Friday, we were both (along with the kids) floating on Cloud 9. Curt was energetic, talking clearer and more frequently; it wasn’t such a struggle as before. His legs were steady and he was trying to walk more. We talked about what we will do when he gets better. We can sell the “handi van” and get a fun car, we can plan a tropical vacation, did we sell the Harley too soon?, oh well, we can get a new one. Our dreaming went on and on. Then all our dreams crashed on Saturday when Curt’s improved health declined. He struggled to talk, his voice was not so clear and he was tired and frustrated over simple tasks. His legs were super shaky and when he struggled to take a few steps across the garage he tripped and fell. I suddenly began to think “this new regime is not going to work, it was too good to be true, everybody dies from ALS.” My heart was pounding and my stomach was sick as the pressure of running the house, kids, work, meals, shopping and thinking about the future care for Curt, all came flooding back. I want a partner, I don’t want to do it myself. Curt felt the same, he wants to take care of his family and live a full life. He doesn’t want to have to be cared for. Crazy how from Friday to Saturday we both went from looking at the future with hope to looking at no future. Sunday afternoon Clarissa sensed our moods and took the boys out for awhile. Curt & I floated in the pool and talked about our feelings. Laying there in the sun, we came to this conclusion; this disease has been slowly destroying Curt’s body for over a year, maybe more like two. It is going to take longer than 3 days for him to get better. Simple.

Meanwhile, we have told zillions of people of our new hope for a future. You all, just like us, are expecting immediate results. Please join us in practicing patience. When the news is good we want to shout it from the rooftops, when the news is not so good, we hope no one asks. This blog makes it easy for us to share news, good and bad, with everyone. I will continue to update you weekly on the status of Curt’s health including our new regime with Lutimax, supplements, and a healthy diet. I don’t mind questions about Curt’s health, so ask me anytime (preferably when the kids aren’t around). Curt would rather not talk about specifics of his progression or regression with the disease. General questions about his health and how he is feeling are fine. He welcomes and is thankful for your support.

Today we saw a doctor in Aliso Viejo, recommended by Tom from Lutimax, who will prescribe supplements to help Curt gain back the muscle that he has lost. We had been told by other doctors that once the muscle is gone you will not get it back. Tom shared photos with us of a man with ALS who had lost most of his muscles and was able to gain them back. We are convinced that this will work for Curt too. Today we met with Tom again in San Clemente and went over the protocol and discussed supplements and diet more in depth. Curt will begin light strength training and will work his legs on a recumbent bike (thank you Ed & Julie for the new bike!).

After a tough weekend, we are once again excited and hopeful. This is going to work, we believe it! Just like our miscarriage; our struggle with ALS is making us stronger, teaching us to reach out to friends and family and bringing us closer than ever before. Thank you for being a part of our lives, for caring, for crying and for praying!

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

Oregon - August 2010