For awhile it seemed I knew my children’s profiles better than the front view of their faces. We spent so much time driving to school, sports, etc., our quality time was spent in the car. I enjoyed those days, they all seemed to open up to me in the car, I think they felt safe and the fact that I wasn’t looking them directly in the face helped. Times have changed; two kids are now driving themselves to school and all their activities. I am happy that although we no longer spend a lot of time in the car together, we still have great conversations.
Our family is very open with each other and there is no subject off limits. This has helped in dealing with ALS, the kids can ask anything and we talk about everything. The fact that Curt has a terminal disease is handled openly and a lot of times with laughter. For instance, the other day as dinnertime was approaching, I made a comment that I was “dying of hunger”. Clarissa said, “You are not dying mom.” I said, “Oh yeah, that’s Dad who’s dying”. We both laughed. That comment may sound cruel and insensitive to outsiders, but we laughed it off and continued cooking dinner.
Clarissa gets home from school at 2:00 and spends most afternoons with Curt. Many times when I get home I find them literally laughing their heads off. The other day, Clarissa was on the floor in stitches and remained there laughing long after I was in the door and trying to find out from her or Curt what was so funny. Clarissa and Curt have many “inside” jokes. I have not been able to break the code as to what they are laughing about and how they can continue on for hours. Clarissa has been a huge help to us. She picks up Corbin from school whenever needed, runs errands, helps cook and will do anything we ask and never, never, never complains. She has an amazing ability to see when I am getting overwhelmed and she will just step in and take over, giving me a break, without any words between us. She is an A student and her teachers seem to really enjoy her. Although she is busy on the weekends with friends we love when she hangs out with us and our friends. She is great about seeing Curt’s needs. She helps feed him, makes his drinks and drives him all over town. She has always been mature for her age and I used to worry about that. But with what we are going through now, I am glad she is mature and realizes how precious this time with her dad is.
Cayden is the busiest of all the kids right now. Along with school and volleyball he has zillions of friends and a socially packed schedule. He rarely sits down for more than 30 minutes. Cayden has the awesome ability to fix anything. Since he was young, he always wanted to take things apart to see how they worked. Last week he fixed the broken heel on my shoe, something Curt would have done in the past. He made a horn and a radio for Curt’s wheelchair, just for fun, out of random items in the garage. He has been enjoying adding accessories to his truck, he knows all the wiring and has done some amazing stuff on his own. He and Curt spend a lot of time talking trucks, motorcycles, muscle building, stereos, music, etc. Cayden is trying to get as much knowledge from Curt as possible. Cayden realizes that their time is limited and that soon, he will be the man of the house. For as busy as Cayden is, he spends a lot of time with Curt and is super helpful with his needs. Cayden is right there to help Curt with projects in the garage, he helps him get dressed, into bed or out of bed. He is so strong, he can literally lift Curt and place him where ever we need him. Cayden is also an A student; schoolwork seems to come easy to him. He is respectful to adults and, like Clarissa, can talk to anyone.
Corbin is super sweet, he has a big heart and keeps us laughing. When Curt was first diagnosed, Corbin seemed to pull away from Curt and became a Mommy's boy. But, over the past few months, Corbin has gotten much closer to Curt. When Curt first began using a cane and then a walker it seemed to create a barrier between him and Corbin. Corbin didn’t like all this adaptive equipment coming into the house and cried whenever he saw Curt regress and especially when Curt would fall. I tried to keep a lot of the stuff hidden until Curt actually needed it, to protect Corbin’s feelings. Now he has totally accepted all the equipment and even the wheelchair. This story says it all: We have a spare wheelchair in the garage from MDA. Corbin uses it to go to neighbor’s homes and races around the street with Curt. Well, last Saturday morning Curt & I got out of the shower and found that Corbin and the spare wheelchair were gone. We figured he was down at the neighbor’s house. When Curt went to check on him he was coming down the street with a Target bag. He had taken the power wheel chair up to Target to buy an X-Box game. We didn’t know whether to discipline him for going to Target without permission or laugh at the thought of him cruising across Seal Beach Blvd. and through Target in a wheelchair. Curt and I looked at each other, began a stern talk, and then ended up laughing. Needless to say, Corbin has come to accept the wheelchair. Corbin has been super attentive to Curt’s needs lately. He worries about Curt’s cold feet and offers to get his UGGS, he brings him water, helps him eat, lays in the sun with him and has really enjoyed shaving (electric) him. Corbin enjoys snuggling with us in bed and always turns on Curt’s heating pad for his feet. He knows how much Curt likes fires in the fireplace and has become great at building and maintaining fires. The other night Curt taught him how to barbecue hamburgers, he was so proud of himself. Like Clarissa and Cayden; Corbin also does great in school. He is very responsible and somewhat mature for his age. He is a planner and thinks about the future a lot. I have to remind him to stay in the moment. I want him to remember his dad.
Our children amaze us every day. Their strength through this ordeal has been awesome. Their love for one another as well as us, is inspiring. Their laughter is contagious. I thank God everyday that we can still laugh as a family.
Los Alamitos High School Boys Volleyball season has begun. We enjoyed a dinner in the gym with all the boys and their families on Thursday. Friday’s breakfast at Adelita’s was so well attended, we had to split into two tables! It is so fun to share Friday mornings with so many people. Curt loves watching his different friends meet each other and become friends. Corbin began his Friday Night Lights flag football league on Friday night with a double header in the rain. Burrrr! Then we were up early on Saturday and off to Orange for Cayden’s first volleyball scrimmage. Back home in time to get ready for Tracy Tague’s wedding. Tracy was each of our kids’ 4th grade teacher. She has been special to our family and it was fun to see her get married. On Sunday, our neighbors, Larry & Debbie and Mark & Kelli took us out to Spaghettini for Curt’s birthday. The evening was full of lively coversation and laughs! We have the best neighbors anyone could ever ask for! We are also blessed with all of you who read this blog week after week and lift our family in your prayers. Thank you!
Please see this week’s video story “We were meant to be together” on the sidebar. Thank you Steve Gallie, for filming, editing and posting the videos. What a gift!
Love,
Cindy, Curt, Clarissa, Cayden & Corbin
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| Corbin shaving Curt |
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| At Tracy & Andy's Wedding |
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| Larry, Debbie, Kelli, Mark & Us |
