Dear Friends & Family,
As the plane backs away from the terminal, my eyes fill with tears. The plane looks like a limousine; black, super shiny with touches of chrome, glistening in the sunshine. Curt is on the plane, he is leaving, after 29 years together I know I will never see him again. Our children stand beside me, dressed in their Sunday best. Clarissa in a simple black dress, high heels with her hair shining more than ever, helped by the reflection off the terminal window. She is quiet and calm, but I know her mind is racing. Recounting the memories of her Dad, the times they have shared, their secret language, their inside jokes. Sealed and gone with the plane. Cayden stands a few steps away, watching the mechanics of the plane and the ground crew, he is dressed in black dress pants, his signature black long sleeved shirt and black shiny shoes. For years I would try to get him to wear dress shoes with dress pants, but he always insisted on wearing black Vans. Today he is wearing Curt's dress shoes, without being asked, he did this to please me, already he is stepping up to man of the house. Corbin is at my side, on the verge of tears. He has been that way for the last 3 years, ready to cry at the drop of a hat. He follows my lead, if I cry, he cries, if I remain strong, he remains strong. Today he is dressed in black, head to toe like his brother. Corbin likes to dress up; he holds his head high and knows he is looking good. I begin to cry. How can this happen to 3 such wonderful children?
The windows on the plane are tinted, almost black; there is no way to see inside. I imagine Curt walking down the aisle, smiling and helping strangers with their bags. Finally he is free to move, released from the shell he has been trapped in for the last few years. I wish I could see him. I want to see him walk, move his arms, talk freely and smile without having to try so hard. I want to share the moment with him, I have forgotten the old Curt. The strong man that never asked for help. The guy who had muscles as a pre-teen and used them to the max. The arms I used to hold as we walked the halls of high school and the leg muscles that made him the wheelie king on his dirt bike and self-taught wake-boarding champ. The shoulders I leaned on in times of indecision and the chest I rested upon. Those images have been clouded by the weariness of taking care of him as he slowly lost his ability to move his body.
I am excited for him. He is going to see so many old friends and have so much catching-up to do. I know the first one to greet him will be his Dad; they haven’t seen each other since December 7, 1995. That’s a long time to be apart from someone you love so much. His Dad was 58, now they are only 12 years apart in age, is that how it works? I have so many questions. Before Curt left, I asked him to come and visit me if he could; I asked him to let me know he is alright. We joked that he wouldn’t mess with me; he can be a bit mischievous you know. I just want to know that he is happy and that he is healthy again. He has suffered for so long.
Enough wondering and daydreaming, I gather the kids and begin walking out of the terminal. We have people to greet and thank. People who have helped us through this ordeal. We will say our thanks and go home and rest. Rest for a few days and then take off to a tropical island. A vacation we have talked about for a long time. Time to rest, time to hang out together and time to remember Curt.
I wrote those words a few weeks ago while sitting in the Dallas-Fort Worth airport terminal. While I waited for my plane I watched couples, families and happy people coming and going. I was a bit tired from my whirlwind 2 day visit with Melissa and family. Seems I had just gotten to Texas and now it was time to go home. I was leaving Melissa, Mike, their 3 sweet girls and the energy of their innocent lives and heading for my home and the hopelessness that surrounds us now. I was feeling sad and the crowds in the airport along with the hustle and bustle were bothering me. I took out my iPhone and the words above filled my head almost faster than I could type them on my tiny keyboard. I was right in the middle of my thoughts when it was time to board the plane. Once we were in the air I pulled out my phone and finished writing the story, when I was done I wanted to find a quiet place to cry. But the plane was filled to capacity and I was trapped beside the window with two passengers to my left. That’s when I met Elizabeth. She was sitting beside me and we began talking. She was very interesting and we were having great conversation. Sometimes you get to talking and reach a point when details just have to be said, I told her my husband had a terminal disease and immediately she knew it was ALS. She knew a lot about the disease and was very encouraging and educated. Time flew by and next thing I knew we were preparing for landing. With her sweet stories, compassion and grace, Elizabeth had pulled me out of my “funk” and suddenly I was ready to go home and face what was ahead. My energy had been renewed. Elizabeth was another one of God’s angels, sent to me at a time of despair, to help me, heal me, and encourage me. Thank you God! And thank you Elizabeth!
There are so many things about this disease and our journey that amaze me. As Curt is growing more tired by the day, so am I. It makes sense that we are both tired; otherwise, I would be wanting to party-it-up while he wanted to rest. Now we are both good with rest. Curt gets tired of sitting in his wheelchair all day so he likes to go to bed early. He will stay up late watching TV, but he is at the mercy of me since he can’t use a remote. I sometimes fall asleep and not wanting to disturb me, he is left to watch whatever may happen to come on. He usually falls asleep around 1:00 am or so each night and sleeps soundly until I have to get him up around 10:00 in order to leave for work. Three days a week his mom comes over and one day a week my mom is there. They have coffee, a late breakfast and then if it is warm outside Curt sits out in the sun. He says he loves the quietness and time to reflect on his life. Traveling in the van has become uncomfortable for him so he doesn’t really want to go places or run errands as in the past. He sacrifices his comfort and takes the 7 mile ride to pick up Corbin from school a few afternoons a week. He loves to be there to greet Corbin!
Curt’s words are probably about 50% discernible. I have to listen intently and then with the few words I understand I can figure out what he is saying. People that are around him often can do the same thing but I always translate his words when people can’t comprehend. He still has so much he wants to say and share. As he is speaking he pauses often to clear his throat and works very hard to pronunciate each word. If we can’t understand him he will try to spell the word, use word association or nod his head as we guess. The other night it took me almost an hour to figure out he was saying the word “deviate”. During the hour long process we took a few breaks and I kept guessing and he kept trying to explain, it was pure torture, but neither of us were willing to just forget it and move on, we had to get that word!
His ability to chew and swallow is also declining. He prefers to eat softer foods; pasta, egg dishes, enchiladas and protein shakes are the easiest for him. He enjoyed a few bites of steak, cut super small, the other night, but said it was more trouble than it was worth. His appetite is small; he usually eats only two meals a day, in part because he is not hungry and part because it takes too much effort to chew. We add thickener to his water to make it easier to swallow and it also helps to keep him from choking. He seems to do fine on his nightly cocktail of tequila or vodka, no choking there! His body continues to get weaker by the day. He can barely help support himself as we are lifting him out of bed or off the portable commode. His arms are lifeless and where ever they lay is where they stay. We have to lift his hand onto the wheelchair joystick in order for him to drive it; he is barely able to move his hand enough to maneuver the chair around. Sometimes in bed he asks to have his arms put on top or under the covers. He needs his legs spread apart while sleeping and gets sore heels from being in the same position all night, so we put a rolled up towel under his ankles to relieve the pressure when needed. Curt’s needs are many and constant.
His spirit is still pretty good. He is not socializing as much and prefers to stick close to home. Although he likes to see his friends, he gets tired quickly. Conversation is hard, sometimes he just likes to listen, other times he has a lot he wants to say. He only has so many words (he can speak without getting tired) and prefers to save them for the special people in his life. He loves the kids more than anything and cherishes his time with each of them. Since his diagnosis, things have never been more difficult emotionally for our family than now. We are all tired, a bit impatient, frustrated and above all sad.
The disease has taken over like a monster we can no longer fight. We have each surrendered and are in a state of limbo as we wait for what happens next. We appreciate the prayers, meals, cards and thoughts as our family is struggling to make the most of our time together. Thank you.
Cindy, Curt, Clarissa, Cayden & Corbin
|Corbin's Friday Night Lights Football Game|
|Clarissa enjoyed celebrating her birthday at Taco Surf with her friends.|
|Another birthday celebration - a small get together at the house.|
Complete with her favorite birthday dessert -
a giant chocolate chip cookie!
|Cayden & Curt were checking it all out and planning how to customize it Ziemke Style!|