Remembering Curt Ziemke: November 2011

Surprise!

Dear Friends & Family,

For the last few days thoughts of what I would post tonight rolled around in my head. I figured I should write something about being thankful since it is Thanksgiving week. But that didn't seem honest. Where thankfulness normally resides in my heart, for the last week, it has been filled more with sadness and resentment about this disease and what it is doing to our family. Still, I wanted thankfulness to be the topic. I tried so hard to concentrate on all we have to be thankful for; I made a list of things people have done for us, gifts that have been given to us, and all the comforts that surround us. Still up until this afternoon I knew I couldn't write about thankfulness.

I got home from work and was in the middle of greeting Curt, his mom and the kids, when the doorbell rang. Clarissa said, "Mom there is a surprise for you." I opened the door and was completely surprised to see Melissa and Rose standing on my front porch. They had flown in from Texas to surprise Curt and I. Clarissa had picked them up from the airport this morning and surprised Curt earlier in the day.

While I attended college in Jacksonville, Texas I got a job babysitting for the Banks Family. The job grew into a special friendship not only with Michael and RoseMary but also with each of the Banks kids. Two years after I left Texas we were still in close contact, so much so that the kids; Michele, Melissa and John were in our wedding in 1988. Our friendship has continued all these years with visits to Texas and their visits to California. We have traveled to Texas for each of their weddings and our kids have been a part of their special days. Melissa has always been a great friend and now more than ever she is such a support to me and all that our family is going through. We had been texting most of the day today and I pictured her at her home with her three girls and husband, Mike. When I opened the door this evening and she was on my porch, I was speechless.

As I was pondering ideas of what to write, the thought of how God gives us the friends we need at certain times in our lives was something I had been thinking about. I am always amazed how friends come and go and different circles of friends come around at different times. Having Melissa so far away is not always easy. We wish we could see eachother more but we talk often, especially the last few weeks as we were both struggling physically and emotionally and have been talking several times a day. And then today to see her in person....I felt like God had hand delivered her. Bam....here....will this make you thankful? Will this pull you out of your funk? Yep, thank you God!

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

Clarissa, Rose & Melissa at the airport.
I can't believe they have been scheming this for a few weeks.

Surprising Curt!
Clarissa walked in with Rose, Curt knew it was Rose and was looking over his shoulder for Melissa.

Curt & Rose bonded instantly!

Cayden has such a way with girls....

Surprising me....I am speechless!

Corbin has been begging to go to Texas to see Rose since she was born 9 months ago.

"I Still Feel Like the Luckiest Man"

Dear Friends & Family,

Lying in bed last night, both of us exhausted from a long weekend in Palm Springs, Curt turned his head toward me and said, "Even with all that is happening to me, I still feel like the luckiest man." I am continually amazed at his strength, courage and ability to accept this role. I told him how wonderful he is and that I am the luckiest girl in the world!

On the way to church the other day, Corbin was talking about how he thanks God often for what he has, then together we shared all the things we are thankful for. We both agreed how thankful we are to have such an amazing dad/husband, through everything Curt remains supportive and positive and an incredible role model.

Here's a little update on the kids...first of all we are so proud of how they do their best in every circumstance of their lives. Corbin (12) transitioned to middle school seamlessly, along with playing football, attending Wednesday night church, planning friend days and earning A's(7) and a B(1) on his report card this quarter, all this with a broken hand, we are so proud of him. Cayden (16) continues to earns A's in school, works 3-4 days a week after school, helps with things around the house and keeps a full social schedule with his many friends. Clarissa (18) is keeping up with her college classes, constantly busy with her sorority and community activities, working 2 days a week and spending time with many different friends. The kids love spending time with Curt and he loves being with them, he is still teaching them so much. They choose to make the most of the time we have left as a family, laughing most of the time, but also shedding tears together or in private.

On the surface our family looks great, but down inside times have never been tougher. Each of us, including Curt, are struggling physically and emotionally. Trying to juggle school, work, household needs, meals and Curt's needs, tends to leave us depleted. We are mindful to help the family member who needs it most at any moment. A while back Corbin was really struggling emotionally, he didn't say anything, we all just felt it and each of us set out to do what we could to make his life easier. The kids have done it for me and they have each done it for the other. It amazes me; this silent feeling or family intuition, not expressed by words, but we all know who is hurting and in need of extra support.

Curt & I spent this past weekend in Palm Springs relaxing, swimming and laughing with great friends. It was a nice change of routine, a beautiful location, and great for Curt to have so many guys to lift him into the pool, jacuzzi, etc. Thank you! Although he missed the kids, he really enjoyed the weekend. The house and grounds were so big, he had plenty of room to get around, find a bit of privacy or locate a quiet spot to talk to someone one on one. Curt is an example to us all; whether he's enjoying a sunset, the smell of the dry winter air or the laughter of family and friends he is savoring every moment!

Please continue to pray for strength for Curt. He is so tired and his patience is tested constantly. Even when he is home all day he gets very tired and goes to bed early. We received a few emails of support over the past few weeks and Curt enjoyed reading them. We know by the stat counter that 300-400 people are following our story weekly, but we don't know who you are. We'd love to hear from you ziemkefamily@msn.com . Meanwhile, thank you for your support and prayers!

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

Palm Springs Weekend with great friends (in the amazing dining room of our grand rental house)!

Thank you Lisa (and Paul) for the "Circle of Friends" candles.
Our friendship will be forever sealed by the memories we have of the all times we have spent together!

Curt had a great time hanging out in the pool & jacuzzi with everyone.

Two Years

Dear Family & Friends,

It has been two years today since Curt was diagnosed with ALS. The doctor said most people live between 2-5 years. ALS has never taken a break or slowed down in Curt's body. His health has declined steadily now for two years. This past week has been extremely hard. He is losing his excitement for life, he is tired, and he seems defeated. He is calm and quiet during the day, he goes to bed early and sleeps well although he is sometimes agitated and uncomfortable at night. The doctor has him on many prescriptions; anti-pain, anti-anxiety, anti-depression, muscle relaxants and morphine. This week they increased all his dosages.

Please pray for Curt's comfort. Also, the saddness that has always been around is now resting heavily on our shoulders. This is a tough time for all of us and all who see him often. We still mangaed a few outings this past week and we are making the most of what we can. Here are some photos. Thanks for praying!

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

Last Thurday night at Ruths Chris Steakhouse, Yum!

Sunday FunDay at the Coyles'!

We got to watch Larry's Family Feud video!

Larry on the right end (so cute!) in 1980! His mom Shirley (love you), on the left!
Debbie was in the audience and they filmed quite a bit of her too! They were engaged at the time!
Thanks for sharing your TV debut with us (and dinner), it was a super FunDay!

Monday Night Meals are such a big help to us.
Thank you Joe, Andi & Alyssa Moreno for bringing us dinner!

Behind The Smile

Dear Friends & Family,

I can’t say whether it was his strong build, his subtle air of confidence or his amazing smile that attracted me to him when we were both 16 years old. There was something about that smile that was different than others’. Behind that smile there was confidence, a little bit of mischievousness and definitely a sweet and tender boy.

As the 16 year old boy has turned into a 45 year old man, that smile has never changed or faded. Even as he is fighting for his life and for every move he makes, it’s the smile that speaks to me, shows that he loves me and continues to encourage me and lift me up when I am down. We used to communicate so well we would finish each other’s sentences, but now that speaking is tough, we communicate through expressions, nods and smiles. Through all his frustrations and all the sadness that surrounds our family in dealing with this disease he can still manage to smile every day. And that smile tells me that he is going to be ok and we are going to be ok. He still has confidence in his smile and that is what gets me through each day. The fact that he is not afraid, the fact that he just takes it as it comes, the fact that he is living a horrific nightmare and can still smile. I wish I could put into words just how awesome of a man he is. Honestly, the courage, the character, and the love he shows for everyone, everyday, is the same as before he was dealt this disease.

Up until this point, we have taken this disease as it comes, one day at a time. We haven’t asked questions about the future or what would be coming up. But lately Curt has been very weak; his legs can no longer support his body, he slumps in his wheelchair as his core muscles are weakening, his speech continues to decline and he spends about 14 hours in bed each night. I can see him getting weaker and deteriorating by the day. I know for sure this will be our last Christmas together, will he make it to Easter, Clarissa’s birthday in March, and so on? I couldn’t take it anymore and called the Doctor last week. He confirmed what we kind of already felt and knew. Curt will most likely be bed-ridden by the end of the year and he will have to fight to make it to his 46th birthday which is February 18th. Curt said “I never expected to make it this long, last spring I never expected to see this winter and here I am in winter, so this is a gift.” Then we cried together and held each other all night long. My mind raced throughout the night; our last time decorating for Christmas as a family, our last Family Christmas Photo, how many more weeks do we have, how many more nights do I get to snuggle next to him, how many more goodnight hugs for the kids? It seems the clock is right above his head, large and loud, ticking faster than ever before.

I used to say that this was such a horrible disease because it takes all your physical strength away including your ability to move, eat, swallow, and breathe, yet leaves your mind fully intact. Now I am thankful that his mind is fully intact because that is what supports his attitude and smile. I could live without his muscular build but I am praying that his smile will be with us until the end, because with his smile he can speak 1,000 words and melt my heart!

The last few days Curt has been lethargic and tired and can’t seem to snap out of it. We thought maybe it was dehydration, but increasing his water intake has not helped. Today the home nurse said his heart rate and blood pressure were low. She didn’t seem too concerned (she was a substitute nurse and doesn’t really know Curt’s history), I will call the doctor tomorrow. Meanwhile he is really struggling to make it through the day. Please pray for him.

Corbin fractured his hand on Friday at school punching a binder to see how far it would fly across the room. Today the Doctor had to reset his broken bone. My heart was breaking as I held Corbin while two doctors struggled to manipulate his bone into place. They formed a cast around his hand and x-rayed it to make sure the bone was straight. It was a long painful procedure. Corbin tried so hard to be strong and brave. He did ok and although he is in a lot of pain tonight, his spirits are good. Please pray for him. He is upset that he is going to miss out on football and other activities. He is amazing and brave just like his dad!

Thank you for continuing to support our family with your thoughts and prayers. Curt would love to hear from you, feel free to send an email any time: ziemkefamily@msn.com

Love,
Cindy, Curt, Clarissa, Cayden & Corbin