Dear Friends & Family,
This week I am sharing an entry from my personal journal. I wrote this entry after meeting up with an acquaintance who proceeded to tell me how great it is that our family and Curt was given this disease. She said, "If anyone can handle it, Curt and your family can. I know some good will come out of this, everything happens for a reason." I know she was trying to be encouraging but it sent me straight to my journal and this is what came out.
December 14, 2010
Things do not happen for a reason. Things happen because they happen. There is no cause and effect in this situation. God is not looking down saying “today I am going to give Curt this terrible disease and devastate his family.” This did not happen so friends could be closer or people could understand the true meaning of life. It did not happen so others could reevaluate their lives and become better people because of the strong person Curt is. It just happened. We were not “chosen” for this disease because our kids are strong and I can “handle” it and Curt has a good attitude. It just happened. Life happens and we are not always in control. We are all here living our lives and what we choose to do with life and how we react to circumstances is our choice.
“We are here for you.” No you are not. You are not in bed with me while I lie awake thinking of how my children will continue on without a dad. Who will walk Clarissa down the aisle, who will be a mentor to Cayden, who will be the male influence on young Corbin? You are not with me when I am wondering how I will get up in the morning and continue on without my best friend and soul mate. You have no idea how it feels to think of having a future with no one to share it with. Who will I talk to when I get home from work? Who will help me make decisions regarding the kids? Who will inspire, support and take care of me? Who will I laugh with? Who will I cry with? Who will help me through losing Curt?
You have no idea how it feels to think of what’s to come in caring for Curt’s physical needs let alone his emotional needs. Who knows what he’s feeling inside. Knowing you are going to die? I am sure he is afraid. What can I do for him? I can do my best to take care of him physically, but what can I do for him emotionally? I calm my thoughts by knowing that when he dies, his dad and grandfather will be the first to greet him in heaven. It is still scary though. I don’t want him to be scared or lonely in his thoughts. But who wouldn’t be? You can preach all day about how glorious heaven is, but has anyone really been there? Yes, we believe and have faith, but who wants to leave the comfort of this life for the unknown.
You are not watching while his legs shake uncontrollably while trying to take a step into the shower or as he struggles to get out of bed. His hands cramp, his legs cramp and he struggles to speak. How does he have the strength to get up each day knowing the tasks that lie ahead of him? Simple tasks such as opening doors, getting a glass of water or brushing your teeth. And it is only going to get worse for him. Imagine the thought of knowing that you are steadily progressing towards total immobilization. Knowing that in the end you will not be able to move, speak, swallow and finally you will suffocate as your breathing muscles die.
Through all of his struggles he remains upbeat and positive. We have often said “you can choose to laugh or you can choose to cry”. We have chosen to laugh. And laugh we do, on a daily basis; around the kids, around our friends, around strangers. But when no one is around, I cry. Oh yes, I cry. Sometimes I cry for him, sometimes I cry for me, sometimes I cry for the kids, sometimes I cry for the world. I cry for the world because Curt truly made it a better place for all. It didn’t matter who you were or your walk of life, Curt was there, opening doors, smiling, being courteous, setting an example of how people should be. He never did it for the notoriety, he just did it.
Please don’t say things happen for a reason. Please don’t say God chose Curt. Our God is a loving God, and He is hurting as much as we are. Please don’t try to reason why this happened or look for the good in it. There is no good in being stripped of the gift of life. Just give us a hug and say you’re thinking of Curt, me and the kids. Take a moment to enjoy the sunrise (with thoughts of Curt), the sunset (with thoughts of me) or newly blossomed flowers (with thoughts of God). He has created a beautiful world full of magical things. Take a moment and appreciate those things. Appreciate your life and all you have.
We are all having a tough time emotionally this week. The kids are being super attentive to Curt as he needs more and more help. Our hearts are heavy. We have spent many nights all snuggled together with Curt at bedtime, just talking. I pray his voice stays, I can't imagine him not being able to talk.
Cindy, Curt, Clarissa, Cayden and Corbin
Dear Friends & Family,
The crazy thing about ALS is that you really don’t have many appointments with the doctor. Once Curt was diagnosed his doctor appointments turned into managing his care as his health declines. We visited Curt’s Neurologist only 3 times in 2010. He helped us get Curt referred to Physical Therapy for a cane, The Wheelchair Clinic to be fitted for a power chair, Occupational Therapy to help Curt learn easier ways to manage tasks such as eating and dressing. Speech Pathology taught Curt how to manage the decline of his speech, chewing and swallowing. Respiratory Care keeps an eye on Curt’s breathing (they want to install a feeding tube in him while he is still healthy enough to have general anesthesia). The MDA sent us to the The ALS Neuromuscular Center at UC Irvine to see the top ALS doctor. He too, was focused on managing Curt’s care, not healing him. Seems weird to have a terminal disease and rarely visit the doctor. I guess that’s just how it is with ALS. No pills, no shots, not many tests, no hope.
The only hope we have been given since his diagnosis in November 2009, came from Tom Lahey (the Mad Scientist, as we refer to him) the inventor and owner of Lutimax in August of 2010. This natural supplement did wonders for Curt’s speech. Tom counseled us on a nutritional program which included limiting sugar intake while increasing protein and veggies which helped Curt's symptoms. Tom introduced us to a friend of his who has had ALS for over 10 years, we all sat together and created a supplement program including testosterone, hcg, and protein shakes based on what has worked for him. This total program may have seemed to slow the progression of the disease for awhile. If nothing else it gave us hope and we were “high on hope” through November. Then reality sinks in and we realize Curt’s health continues to decline each day.
I haven’t said much about Curt’s health and struggles over the last few months as we have tried to remain focused on the positive and on the things he CAN do. To most people he looks completely healthy sitting in that wheelchair. Always smiling, well-groomed and tan, I know strangers wonder why he is in a wheelchair. They always look him up and down and then focus on his legs trying to figure out what is wrong with him. It’s kind of entertaining to walk behind him and watch the looks from people. Anyways, he wants to present an image of health and vitality. He works really hard at that and I support him fully. After seeing Curt looking so good and acting cheerful, some may wonder, what’s so bad about ALS? Well, tonight, I am compelled to share what it is really like battling the disease and what Curt goes though each day.
It starts really early each morning, usually around 2:00 or 3:00 am; sudden, severe uncontrollable shaking of his legs while he is in bed. The shaking is so violent it causes the entire bed to shake and startles me awake. You would think I’d be used to it, but many nights it wakes me thinking we are having an earthquake.Soon after the shaky legs come the leg cramps. His calves cramp and when he tries to flex his ankles his shins cramp. He can’t jump out of bed to stretch out the cramps so he just tries to endure it and wait for it to pass. If I hear him cramping (not that cramps make a sound) I will jump up and massage his muscles. Usually he tries to fight them on his own because he doesn’t want to disturb me.
He wakes up when I get up for work. Since his arms are weak and his legs don’t bend he can barely get himself up and out of bed and into the wheelchair which sits directly beside the bed. Once in the wheelchair he can get right up to the shower door where I help him as he takes two steps in and holds on to the safety grab bar. We shower together, where, instead of focusing on the fact that he can’t do it himself, we have fun and joke around. He takes a couple of shaky and scary steps back out of the shower and after I quickly dry him off he is back in the wheelchair. We both sigh with relief that the most dangerous part of the day is over. I help him with squeezing toothpaste, applying deodorant,dressing and sometimes shaving. You can imagine how hard this is for him; to have to be cared for. We have found that if we laugh our way through it, it is easier. I tell him, “you better be nice or I will dress you in mis-matched clothes or no shoes today.” He gives it right back to me with, “I’ll tell them that bruise is from you.”
His hands are so weak and bent that he has trouble holding a hairbrush, toothbrush or eating utensils. He seems ok with holding his cocktail glass though(?). He has a hard time drinking liquids and often chokes as his swallowing muscles are becoming weaker. He drinks a protein shake each day which helps him swallow his supplements. Talking is hard. He constantly clears his throat and speaks as little as possible these days. He can’t yell or even talk loudly. A few weeks ago Cayden and Corbin were trying to light the outdoor propane heater. Between the music and commotion and the fact that Curt can’t raise his voice, Cayden lit it when Curt was trying to tell him to wait. The propane burst when Cayden lit it and his fingers were burned. Curt was frustrated and upset that he couldn’t protect Cayden and he didn’t hear his warning. Luckily the burn was not bad and Cayden will get it from now on.
Up until last week, I would prepare Curt’s breakfast and take Corbin to school and then go straight to work (Clarissa & Cayden leave for school earlier). That would leave Curt home alone from 8:00 - 2:00. He would struggle to get snacks or lunch and we were also worried about him falling when no one was home (we got him a Life Alert device). Anyways, last week we hired a home health care giver named Rosalie. She has a bubbly personality, lots of energy, is a great cook and already loves Curt. She makes him an awesome healthy breakfast each morning, fixes him lunch, protein shakes and prepares dinner for us to cook in the evening. She drives Curt on errands and keeps him hydrated as he tans (jk, not yet). She helps with the laundry, kids and shopping. She has been a blessing in that not only does she care for Curt and give me peace of mind that he is safe, but also does a lot of household tasks so I have more time to spend with our family in the evenings.
When bedtime rolls around Curt once again needs help getting ready for bed. Recently he has had super cold feet. We have placed a heating pad in bed near his feet which really helps him a lot. He struggles to get into bed and positioned, he can’t scoot up or down in bed, so where he lands is where he lays. He usually sleeps pretty peacefully until the shaky legs start.
Through all of this he remains the most positive man I know. He used to be completely independent, never asked for help, and did so much for others. He never gave it a second thought to help wherever and whenever needed. I know that the fact that he needs to be cared for is really tough for him. It has been an adjustment for both of us, but laughter and love is what gets us through it. He constantly amazes me and I am still the luckiest girl in the world!
We were sad to learn that a fellow ALS friend passed away last week. He was a friend of my parents who was diagnosed in February of 2010. He was 70 years old and lived in Florida. We enjoyed corresponding via email and comparing our ALS journeys. He and his wife (who needs full time care due to severe memory loss from a stroke) would travel in his RV and ride Harleys. Once he was diagnosed he spent his time arranging for the care of his wife knowing he would not live to take care of her. Although we never met him personally, we know from his emails, his devotion to his wife and from mutual friends that he was a great man.
Once again we had a week full of friends and fun! Rosalie started on Monday and fit in easily. Cayden began shooting a commercial at the office for American City Pest. We had breakfast with the Friday morning gang at Adelita’s, and dinner at Matsu with a group of 14. Everyone joined at our house after dinner for drinks and dessert. It was fun sitting around the fire and laughing. Saturday, Cayden tried out for the high school volleyball team. Sunday, I shopped and lunched with Lisa and Rae Lynn in Burbank; it was nice to get away and have girl time. George came over and fixed the heater and more in the Cherry Bomb while Curt hung out in the driveway enjoying the warm sun. Mark fixed the Kegerator which lost its coldness and we were on the verge of losing a full keg of beer. Monday we went miniature golfing with the Melanson Family and then had a fun lunch at a semi-deserted sports bar while we played awesome music on the jukebox and the kids played pool. My car got broken into on Monday and my 3rd row seat was stolen along with a birthday gift for Jim. I am glad that’s all they took, but it bummed us out after a fun day with the Melansons. Mom and Dad spent the night in front of our house last night on their way to Lake Havasu. We enjoyed a fun and lively dinner at Taco Surf. Paul Craig has been busy fixing things around the house and Tomas is painting the awning and garage. Rosalie came early this morning and made Clarissa and Cayden breakfast burritos to eat on their way to school. They were so excited and said they were the best burritos ever. It is impossible to focus on the bad effects of ALS when we are surrounded by so many wonderful people. Thank you all for being a part of our lives.
Cindy, Curt, Clarissa, Cayden & Corbin
Dear Friends & Family,
I gripped my pillow tight and vowed to not let myself fall asleep. The room was dark and no one was stirring. I wanted to get up and get a glass of water but I was afraid to leave my pillow. My 5th grade training bra was tucked safely inside my pillow case and I intended for it to stay there all night. It was my next door neighbor Suzie’s slumber party and I couldn’t believe I was there. She was in 8th grade and I was only in 5th. She was so cool and so were all of her friends. I was just the awkward little girl from next door. Earlier that night, the girls made a plan that whoever fell asleep first would have their bra taken and put in the freezer for the night.There was no way those better endowed older girls were going to see my little starter bra. I tried my best to stay awake the entire night but at some point I fell asleep. I was relieved to wake up in the morning and find my bra still in my pillow, I think those older girls gave me some grace. I will never forget that night! Thanks Suzie for a great party, I really felt special to be there with your friends.
Curt & I both have happy memories of our childhood birthdays. We both remember always having a cake and some friends over. I remember having some really fun slumber parties. Without a doubt we were both made to feel special on our birthdays. Maybe that is why we are so excited about our kids birthdays. Each of them have had a party every year of their lives. Usually they have a party with friends, a party with family and a party at school. We have a birthday sign that has been around for years and it magically appears hanging from the ceiling when they wake up on their birthday. It is fun to devote a day (or more) to make them feel really special. Curt & I have always enjoyed helping them plan their different parties and celebrating their big day.
We also enjoy celebrating our friends birthdays. We are pretty good about remembering to send cards and/or gifts. We both love to shop for birthday gifts for our friends. Unlike Christmas, we have time to really think of something special that reflects their personality or something they will really enjoy. We have been celebrating birthdays with our high school friends for years, and always look forward to dinners and parties in their honor.
This past weekend we celebrated my 45th (ugh) birthday. It began with dinner at The Bottle Inn in Hermosa Beach with the kids, my parents and Curt’s mom. We sat in the wine cellar which is always fun. We searched for the most expensive wine, would you believe $1,800.00 for a bottle of wine? We stayed clear of that bottle! Friday was spent at Farmer’s Market and The Grove with my “Friday Friends.” We shopped and then had lunch at The Cheesecake Factory. We got to see Extra being filmed and swooned over Mario Lopez a bit. Friday night we had a party here complete with The Taco Guy and non stop margaritas. It was fun celebrating my birthday with so many special friends. Thank you all for a great day! Saturday night Clarissa & Cayden attended their high school Formal Dance. They had a great time. It was fun to see them dressed up!
Please continue to pray as Curt continues to struggle with so many physical limitations. He is getting weaker by the day as ALS continues to destroy his body. He looks great as usual and his attitude is unbelievably positive! He is amazing!
Cindy, Curt, Clarissa, Cayden & Corbin
|The Bottle Inn - Wine Cellar|
|We have a tradition of placing all cell phones in the center of the table|
until dinner is over, no talking, no texting. After dinner it is fun to see who
received the most missed calls and texts!
|Lynn, Lori, Carolyn, Michelle, Julie, Me, Jaime, Lisa at my Birthday lunch!|
|Jim & I have been celebrating our birthdays together for over 20 years!|
|A few of Curt's fans!|
|Clarissa & Tyler|
|Cayden & Krystal|
|Inside the Party Bus|
Dear Friends & Family,
Other than the glow from the fire and the lighted garland strewn across the mantle, the living room is dark. Curt and the kids are sleeping and here I sit on the couch, exhausted, yet excited for Christmas which is in two days. The house is quiet, super quiet, rarely do I experience such a quiet in our ever bustling house. I sit reveling in the silence and soft light in the room. I am mesmerized by the glow of the fire and the shadows it casts on the walls. I stare at the stockings hung from the mantle. Five of them. I always thought I was an even numbered person, but I realize four stockings would not look as good as five. You have to have a center and it takes an odd number to have a center. Curt’s stocking is in the center. He is our center. Our core. Our strength. I wonder about next Christmas. Will there be five stocking hanging from the mantle? Will he be here? If he is not, will I still hang his stocking? Will we celebrate Christmas as usual? Stay in the present, I tell myself. Live for today. But the house is quiet, I am alone, and this is what I do when I am alone. I try to figure out what life will be like when he is gone. Like if I prepare myself now, maybe it won’t hurt so badly when it happens.
Flash forward one week. I am in the kitchen updating our 2011 calendar when Curt calls out from the living room “the Popp family is here.” We open the door and are greeted by flying snowballs. Suddenly we are engaged in an all out snowball fight, the Popp family, our family, the Coyle family and whoever else dared to stop by. Wow, what a fun surprise! They had brought a truckload of snow to us from Big Bear. Once the snowball fight was over we built a snowman on the front lawn. It was a super fun night and continued for the next few days as our house was the talk of the neighborhood. People were stopping by to figure out how we had a “real snowman” in our yard. Thank you Paul and Lisa for the spontaneous fun! Its days like these that our life seems pretty normal and the thoughts of “how many stockings will be hung next year” are few and far between.
Our Christmas vacation was super busy. It began with some wild rain and loss of power at our house for a full day. It was fun lighting candles and living like Amish people for awhile. When things got dull Curt had Cayden fire up the generator and plug in the Christmas lights and then watch our neighbors freak out when we were the only ones with power! Leave it to Curt (and Cayden). Over the next two days we had a potluck at the office, dinner with the Popp’s in Acton, visited friends in Torrance, opened presents with my parents, visited with more friends and then prepared for Christmas Day at our house. Curt taught Cayden how to prepare his famous prime rib; it turned out great, along with all the food everyone brought. It was a really nice day filled with family and friends.
We made a quick trip to Lake Nacimiento for a few days. The boys and Clarissa had fun hunting quail. Johnny taught Cayden how to clean and prepare them for cooking. We returned home so Cayden could go motorcycle riding with Krystal in Ocotillo Wells. Clarissa spent her days coming and going with friends. Corbin was busy with friends also. Friday morning we met a big group of friends for breakfast and then celebrated New Years Eve with Bill and Carolyn Melanson as our families went to see Narnia and then to their house to ring in the New Year.
We know that 2011 will be another fun-filled year with all of you in it. Thanks for being our friends.
Cindy, Curt, Clarissa, Cayden & Corbin
|Christmas Eve at Mom & Dad's|
|Cayden made Curt these "handy glasses" for Christmas.|
He put velcro on the glove and glass, it makes it way easier for Curt to hold onto the glass.
|Our Christmas Prime Rib - Great Job Curt & Cayden!|
|Clarissa made Curt this cute frame.|
|The hunters - Johnny, Cayden & Corbin|
|Curt & Clarissa out for a ride at Lake Nacimiento.|
|Corbin is driving Curt/Cayden's truck. A little excited!!|
|Corbin wants Cayden to save this truck for him until he is old enough to drive (legally).|
|Paul Popp and the truck full of snowballs!|
|Celebrating the New Year with the Melanson Family!|