I Used to Tell Him Everything

Dear Friends & Family,

Up until a few weeks ago Curt & I shared everything. There was no topic off limits. I guess that is why we are so close, we have nothing to hide so it is easy being open and honest. A few weeks ago I received a text that one of Curt’s friend’s dad passed away. Curt grew up around the corner from his friend Ray and had fond memories of his Dad. When I received the text, we were in Las Vegas getting ready for the Garth Brooks concert. A few minutes earlier Curt had fallen while he was trying to take his shoes off. I saw it happening and tried to stop him from falling, but there was nothing I could do. He hit the floor hard, barely missing the wheelchair and coffee table. I felt so helpless and sad for him. The kids were in the room next door and came running when they heard the thud. We all went from super excited about the room, the view and the concert to super sad seeing him there on the floor. Anyways, back to the text I received. Just as I was about to tell Curt that Ray’s Dad passed away, something came over me, I paused and decided he didn’t need any bad news or pain at that moment. I didn’t tell him. We continued getting ready, enjoyed a nice dinner, the concert and then explored the hotel and a little bit of Vegas. We went to bed with the curtains open showing us the awesome lights of Vegas. I really wanted to tell Curt, but didn’t want to ruin the moment and the fun we were having. I fell asleep wondering when I would tell him.

The next day we were about to have breakfast when Curt received a phone call from his friend Ray telling him about his Dad. I acted like it was new news to me. I was hurting inside knowing that I withheld information from him and now I was lying about knowing about it. This secretive stuff was brand new territory for me and was eating me up inside.

Since that incident I have learned to hold back from telling him a lot of things. He seems so fragile both physically and emotionally. I feel like I need to protect him. I need to filter things for him and just give him the highlights. This is a whole new ballgame for me. To go from telling him everything.....to deciding what he needs and doesn’t need to know. It is different and takes work. I am not even sure it is the right thing to do.  But really....does he really need to know every detail? Paul & I shopped for days for a mini van for him and only brought him into the decision making process once we had narrowed it down to the top two. He knows nothing of the different handicap conversion companies or the financing details. When I come home from work he doesn’t know how much of my day was spent making his appointments, researching wheelchairs or dealing with Medicare. At this point, he doesn’t need to know boring details, he needs to be happy and have his needs met. I will do whatever I can to make his life comfortable and fun to the end. Even if that means not telling him everything.

We have had a busy couple of weeks full of friends, dinners and family get-togethers. Curt is enjoying his days lunching with friends or hanging out by the pool with the kids. We are looking forward to spending this weekend at Lake Nacimiento! We are thankful for every one's calls, cards, dinners and encouragement. We are beginning to need that more than ever as this disease is truly impacting our normal life.

A few weeks ago, Curt, Corbin and I went out to lunch. Curt and I were sharing a soda, Corbin thought it was so cute, he grabbed the camera out of my purse and took this photo. I thought he was crazy at the moment, but I love the photo and love that Corbin is so thoughtful and tender. Most of all I love my handsome husband and hope we can share many more sodas!

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

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.

  

Thanks again to everyone for supporting our family! We love you all!

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

The Fall

This is Steve Gallie and Cindy has asked me to post this update on her behalf.  Curt took a fall last night, and although he will recover from his injuries, it brought home for the entire family the harsh reality of this disease.  They are all really struggling right now, so let's make sure to keep them in our prayers.  Cindy felt that given the circumstances, as an update, it would suffice to post the email exchange that her and I had last night concerning Curt's fall.
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Hi Steve,

I am debating on doing an update tonight. Just as I was about to sit down and begin writing, Curt fell down the front porch. He hit the concrete full force with his face. He skinned up his lip and chin and chipped his front tooth. We have both been crying most of the night. I am not sure what I was going to write will come out now. I may wait until tomorrow when our spirits are better. Anyways, for some reason he is embarrassed that he fell and did this to his face. Mainly we are both sad that this disease is destroying our lives day by day. Thanks for listening.

Cindy
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Cindy,

I feel like crying, too. I am so sorry. I am here to listen anytime...anywhere. I mean that.

I am a pretty emotional guy, but I've noticed something interesting about how I've responded to Curt's illness. I haven't internalized it for some reason. I know myself well enough to recognize that I've been in denial. In other words, I think I've repressed the reality of it all. It's such a horrible disease that is inflicting such a wonderful family that I am not sure how it fits with my rational mind, my faith, or the world I've known. I also know in the back of my mind that if this could happen to Curt, it could happen to me, or my kids. That is a possible reality that I just don't want to accept. I am sure more than anyone you guys know that and feel it deep within your soul.

Tonight, your world changed. The reality of the illness was forced in your face. No, actually it was forced in Curt's face in the most cruel way. First it was him having to use a wheel chair, now the fall. What's next? Curt must feel awful. I feel awful for him. His manhood and humanity is being stripped from him. You must feel helpless. This is not how life is supposed to be.

I will pray an extra prayer tonight....one from my heart. I will ask God....WHY? I don't need an answer, but you guys do. Why you?, why your kids?, and why Curt? Quite frankly I can't think of an answer right now, but I believe that God will give you one, someday. I have hope that He will.

In my response to one of your weekly updates a while back, where you talked about hope, I mentioned that the source of my hope is being able to see the hand of God working in unexpected ways. Amidst tragedy there will be the subtle and unexpected glimpses of our God letting us know that He is real and that He is right there with us all the while. He cares about each and every second...our every breath and our every move. I pray that you will see Him as you all walk through the valley of the shadow of death and that you will know and feel that He is there...always.

We love you guys.

Steve