A Year Ago Today
Dear Friends & Family,
It was one year ago today that I “googled” Curt’s symptoms and learned of Amyotrophic Lateral Sclerosis also known as Lou Gehrig’s Disease. His symptoms perfectly matched the symptoms listed under ALS. Curt had mentioned to me a few times that along with muscle twitching, and weakness in his left hand he seemed to be tripping over small things like the edge of the carpet. Would you believe that the ALS website states as a symptom - tripping over or catching a foot on the edge of carpet? Those were the words that convinced me that he had ALS. Word for word. Although he had most of the symptoms on the list, that one was so specific. I had heard of Lou Gehrig’s Disease in passing but had no idea what it was or that it carried a death sentence. I assumed it was a treatable disease.
Anyway, Curt had just left on a four day motorcycle trip the day I self diagnosed him with Lou Gehrig ‘s. That is when the pit in my stomach began. I was home alone with the kids, pretending that all was ok; meanwhile my mind was going in a million different directions full of “what ifs” and “how comes”. When not taking care of the kids, I would sneak to the computer and research the Disease. I read and read and read and cried and cried and cried. I read stories of people fighting the Disease. There were photos of a 40 year old man who was running marathons and within a year of his diagnosis was in a wheelchair. I thought to myself he is not Curt; Curt is strong and coordinated. Curt will not let his body break down. Curt is a fighter, he can fight this disease like no other.
The next day the kids & I drove to Valencia to my friend Michelle’s house for a party. I remember the drive clearly; sunny day, country music on XM radio, and 3 quiet kids. For some reason no one talked the entire way. I was fighting the tears back, thankful that my sunglasses would hide what was trying to pour out of my eyes. Those darn country songs just kept playing and all I could think of was - this is how it is going to be. Just me and the kids.
Michelle & I grew up together so we are close to each other's families. Everyone was asking where Curt was. Somehow, we all ended up on the patio by the pool in a circle talking about Curt. One by one they would tell their favorite “Curt” story about motorcycles or what a daredevil he is. It was surreal to me, I felt like he was gone and we were memorializing him. Of course no one had any idea that there was anything wrong with Curt. It was cool for the kids to hear every one's stories about their dad. I sat there dying inside with the pit in my stomach.
I was thankful for the darkness that filled the car on the way home. The kids were sleepy and didn’t notice my silent tears. Once we were home and they were in bed, I cried the entire night. I am usually a very sensible person and would wait for a diagnosis from the Doctor, but the “tripping over the carpet” phrase had me completely convinced. I kept my thoughts to myself for weeks until we were in the Neurologist’s office; I finally had to ask him “could this be Lou Gehrig’s Disease?” Curt looked at me and asked “what’s Lou Gehrig’s Disease?” The doctor said it was too soon to tell. I broke down on the way home from the Doctor’s office and told Curt what Lou Gehrig’s was and what I had been holding in. He had figured something bad was happening to his body, but had no idea.
We got home from the doctor; Clarissa was on her way out the door, Cayden was on the couch recovering from knee surgery the day before, Corbin needed something and friends were calling wanting to get together for dinner. Life was moving fast, we had no time to think about it, worry about it or be sad about it. That was a year ago.
Today, a year later....Curt still trips over the carpet, spends most of his time in a wheelchair (you can’t fight this Disease), and I know more about Lou Gehrig’s Disease than any other disease. Life is still moving fast and we still choose not to worry about it or be sad about it (as much as possible). And best of all we still have friends calling to get together for dinner.
Thank you all for reaching out to us last week after “the fall” with prayers, cards and calls. It was an extremely sad night and although we tried to downplay it for Clarissa and Cayden, they saw Curt’s bloody face and chipped teeth and felt the sadness. We all spent the next day together; lunch, pedicures, shopping and movies. We had fun pushing Curt around in the wheelchair and just acting crazy. Our moods were back to normal by mid afternoon! Curt has recovered from his wounds and is getting his teeth fixed on Thursday.
Corbin has been in Oregon with my parents since the end of June. Curt drove with Larry on Sunday to pick up Corbin and they will all be home tomorrow. Clarissa got home today from visiting Mike & Melissa in Texas. She had a great time there visiting TCU and attending a Rangers game. Cayden & I have been home alone for a few days, it has been nice to be able to have time and energy to devote to one child.
I wanted to include a few photos from our 4th of July Weekend at Lake Nacimiento. Clarissa & Cayden & friends. Cayden wake-boarding. Clarissa driving the boat (with a few tips from dad), while pulling Cayden (uncle Bill in the mirror). Corbin with Grandma and Grandpa.
Cindy, Curt, Clarissa, Cayden & Corbin