Google+ Followers

Tuesday, September 17, 2013

A Day With Paxton

 One thing that has made life much more fun and less sad this last month has been the grandkids! Through all that has happened the last several months actually, the one constant is that a hug from either of them can make me smile in the hardest times. Not only can they make me smile, but out and out laughter and fun ensue when they are around.

After the funeral Friday, Willie, Dad and I brought those two little rays of sunshine home with us for the weekend. The perfect gift.

Saturday, Willie took Kahlen to a family reunion in Des Moines. Dad wasn't up for another long car ride so he, Paxton and I all stayed home. I haven't really ever had a just Paxton day. It was marvelous. We got to have time like we never had before. I love Kahlen more than I could ever describe, but having time with just Paxton was a new and welcome experience.

Paxton is probably about the happiest baby in the world. He entertains himself well when necessary. He laughs and giggles easily. He loves to explore and discover. He is the easiest baby EVER!

 Left to his own devices, he will find fun and interesting things to do. He took my dad's walker for.... a walk. Paxton snuck it away from my dad while he was sitting in his chair. Before we knew it he was walking in circles around the front room. He giggled and laughed the whole way. We had to laugh right along with him. Dad's walker wasn't safe for the rest of the weekend.

Later, he wandered out to the kitchen. I was sitting on the couch. Suddenly, I noticed the trash can moving. It starts moving out from underneath the counter. Then little hands poke out, holding tight to the closed lid. He came out from under the counter, walking behind the trash can, pushing it along, his own little walker. He was very proud of himself, tickled pink with his accomplishment. The little tunnel under our counter had to be traveled more than once that day.

Paxton and Bazinga have a happy coexistence. They play, Paxton laughs. Paxton pulls Bazinga's hair, and laughs. (Bazinga doesn't find that quite as amusing as Paxton does, but he behaves very well about it all.) Bazinga, who has quite a thing about ears, licks Paxton's and Paxton laughs some more. I'm pretty sure that they are conspiring that once Paxton is walking, that they will rule the world. Pretty sure? Heck I know they are. I'm sure their first conspiracy will likely involve Paxton climbing up on to the counter to steal a cookie or two for them to share. The next? Will probably involve the cat. A torture of some sort, likely. (Though, I'm sure their idea of torture will involve only licks and possible a lot of slobber.) Mia will have quite the battles in her future.

The Funeral

The flowers are from the spray on top of Ben's casket
I have never really understood the reason for having both a visitation (or viewing) and a funeral. Especially, when the deceased is cremated. I guess it does give people who can't make it to the funeral a chance to say good bye. It just seems harder on the family though. With everything else they are going through they have to plan two events instead of just one, and in a matter of just a couple of days.

I never understood until now. In the Orthodox tradition, the visitation is used for a short service called a Trisagion. The Trisagion is a prayer  chanted by a priest, over the deceased. It asks for forgiveness of sins both deliberate and accidental and for blessings on the deceased. After the prayer, people do the eulogies. The day of the funeral only the priest speaks. There was a definite purpose for each.

Ben's Trisagion and visitation were wonderful. His friends Jim, Gene and Vickie each got up and spoke for him. Jim's had humor, warmth and caught Ben's essence. You could tell the man picked to be my brother's Godfather in the church was a treasured friend. Gene, he gave the eulogy of a brother. His voice broke, his eyes swelled, he had a very hard time finishing. Gene and Ben had been best friends as long as I could remember. The only thing that kept them from being true brothers was the inconvenience of being born to separate parents. Vickie graduated high school with Ben. They went to Tech, and have worked on reunions together, they were good friends.

This wooden cross was on top of Ben's casket. It was made
By the Trappist Monks that made the casket, and meant
for the family to keep.
The Gold Cross was the one in Ben's
casket for the visitation and

Friday was the funeral. Friday the 13th. Stacey and I didn't realize when we planned it that it landed on Friday the 13th. Anyone else, might take exception to that. Maybe even be insulted that loved ones would plan their funeral on Friday the 13th. My brother, was probably howling with laughter over it. I can imagine him throwing his head back "HEH, HEH!!" A laugh he was famous for.

Stacey, Dad and I had picked out a casket made and blessed by Trappist Monks in Peosta, Iowa. It was simple, modest, and absolutely gorgeous. The Monks use Earth friendly methods to harvest and grow the trees from which they make their caskets. I know my brother would appreciate that.  He looked very comfortable and at home in it. His casket fit him, not ornate, not over blown.

The service at the church, was beautiful. I have never been to a funeral like it. The priest and a chanter sang almost the entire service. They both took turns and harmonized. It gave you the feeling of sadness, hope and beauty all at the same time. It was, well I can't find the words. It was spiritual, you could feel the presence of God in their voices and harmony. It felt large. It was full and overwhelming. I couldn't stop crying.

Father Basil talked about Ben more. He made us smile and laugh through our tears. You could tell he too would miss my brother.

He was taken to the burial site at the Greek Orthodox part of a cemetery. There again the Father sang a prayer. My dad was exhausted and waited in the car, but could see. I pulled a flower from the spray on top of the casket and took it to Dad. Father Basil took the cross that had been in Ben's casket and gave it to Dad along with some more flowers.

There was a reception after back at the church. It was a simple coffee hour reception. There were fruit trays, veggie platters, nuts, and chocolates. There were also Dutch Letters and Windmill cookies from Pella. Getting these for coffee hour had been a tradition with Ben and his Godfather Jim. Jim wanted them to be there for the reception. (Is it called a reception for a funeral?) I sure wasn't going to argue, Dutch Letters are wonderful. There was laughter and stories of Ben. There were still tears and grieving. It reminded me of one of my most favorite quotes from a movie ever. From the movie Steel Magnolias, "Laughter through tears is my favorite emotion."

Wednesday, September 11, 2013

Happy Birthday Alyssa

In 2011, I remembered what September 11, 2001 was like for me. 

Today, I'm thinking back on a much happier September 11th. It was September 11, 1990. A happy September 11. The September 11 that my youngest daughter was born!

Happy 23rd Birthday Lil'est!!!

The Obituary

Ben's obituary was in the paper today. My sister wrote it, and the picture was one I took at Alyssa's high school graduation in 2009. It was when he was still healthy. Before the ravages of liver disease had taken over his body.

I think his obituary was very hard for my dad to see. An obituary can be the one tangible thing that makes you know you aren't in a nightmare. It is in print to look at again and again. It breaks through that foggy mist that you live in those first few days after a loved ones death. You know, there is no longer a hope that person will walk in the door and that it was all a mistake. It makes it all very real. I think Dad went through this today.

Dad has really been struggling today. Not only with the loss of his son, but with the betrayal of his own body. He has been very achy all week. His lower back decided to spasm up on him a few days ago. He was in a lot of pain for a couple of days. I gave him his extra pain med, we used the heat and massage on his chair. Monday, I got him in the car to take him to the hospital. The trip to Des Moines, itself, seemed to do the trick though. We went to lunch at one of his favorite places, (gave me a gut ache though) and he was feeling much better. He decided to go back home instead of to the hospital.

Today he has had a lot of accidents. We had to change his pants every time he tried to make it to the bathroom. He was exhausted. He decided to lay down for a bit in his room. He got up to use the urinal instead of try to get to the bathroom. Then he accidentally spilled it all over his pants, the floor and his bed. He was embarrassed and frustrated. We had to change his pants again. We also had to change his bed. It has a special sheet got the mattress. We only have one. He had to wait until it was washed and dried before he could go to bed.

I told him it was ok for him to be sad about Ben. That he didn't need to be strong for anyone. "I just wish we knew what happened." He said in a broken voice.

He is heartbroken in a way I have never seen him before. I don't remember him taking any death this hard before. Not his mother's, not my mother's. Once he said that people asked him why he doesn't cry at funerals. "I have seen too much," is his answer. WWII had this effect on him.

This is different. His sadness is deep. So very deep. He never expected to out live Ben. Losing Ben has left a hole that I don't know how to fill. Ben was his buddy. They did everything together. Ben was not just his son, he was his best friend.

I bought him a suit for the funeral today. When he looked at it I could see in his face what he was thinking. That he should be the one, not his son.

Tuesday, September 10, 2013


It's amazing how a routine that not long ago was mind numbing, today was a welcome change from hectic, heartbreaking events of the last three weeks. Dad and I stayed home all day today. I did laundry, a little vacuuming, dishes, the things I hate, today were welcome friends.

Along with everyday chores I gave Bazinga a bath. I don't know if I have ever said this before, but Bazinga HATES baths. He hates being combed, he hates getting his nails clipped. The only part he likes about, as my friend Dawn calls it, puppy spa day, is getting the fur cut away from his eyes.

Puppy spa day always starts the same. There is a very precise routine that starts every puppy spa day. It never varies. Puppy spa day starts with me convincing myself that Bazinga needs a bath. This is the longest part of the day. It usually is a twenty-four to forty-eight hour process. I have to work hard to get to the point where I truly believe I need to give Bazinga a bath.

It starts with the looking at him and saying "you need a bath." This part of the process can take days. It must be done repeatedly. If not said at least seventeen times, the world would be sure to implode.

The next step has been proven to be the absolute most difficult step in the process, many studies have been done. The next step, is getting my butt off the couch. First, the 'you need a bath" step must be repeated at least three more times. Then all electronic devices must be set aside. Sometimes, this take a crowbar and melted butter. Once the separation from all electronic devices has been achieved, the legs and knees must lift said butt up off of the couch. This can take hours. If not accomplished quickly after separation from electronic devices, then the devices seem to find their way back in to the hands and the whole process must be repeated. At least another forty-eight hours will be needed to complete separation once again.

When removal of butt from couch has finally succeeded, Bazinga must be caught. Since he is not the brightest dog in the world, that isn't very hard. Why he thinks hiding under Dad's walker is a good idea is a mystery that likely will never be solved.

I take off his collar, and he knows the next couple of hours will be filled with torture and horror. He gets coconut oil rubbed into his hair. The ever so evil comb comes out. The next half hour to forty-five minutes are spent having that evil comb ripping out every last lock of hair on his body.

Once the coconut oil is all combed through his hair, the terror is just beginning. He hears the bath water start to fill the tub. "Where can I hide? Where can I hide?" He says to himself. "Oh, yeah, the walker! The BEST hiding place ever!" He slinks over and sits by the walker. I pick him up and take him into the bathroom.

"How does she ALWAYS find me there. It is the best hiding place ever!"

The actual bath goes fairly quickly. Bazinga is sure I'm trying to drown him, but he always survives. His blue horse shampoo gets everywhere when he shakes. He shakes a lot. I know he does it on purpose to get blue horse shampoo all over me and the bathroom. Undaunted, I continue showering him with water. Then wrap him in towels and take him to the front room.

Time to clip his nails and comb him again. More combing. He hates the combing. He rolls and twists and turns. The whole time messing his hair back up all over again, which causes more combing.

Finally done, I put his Hawkeye collar back on. He LOVES his collar. His collar makes him happy. His collar is magical! It has super powers beyond all super powers! It makes the combing stop! Once his collar is on no one can comb him. It is his force field of safety! No comb can touch him with his collar on!

Sunday, September 8, 2013

The Next Day

As Ben's journey on this fragile earth ended, and his new one began, the rest of us had to go on. Willie took Dad home. I wasn't up to driving the hour and a half drive. Alyssa and Shane had invited me to stay over at their house and see the grandkids. What better medicine could their be? I took her up on it.

Kelley decided I shouldn't be driving, she was right. She offered to drive me to Alyssa's. It sounded like an excellent idea to me, I didn't fight her on it.

We had to make a stop at a FedEx store. Stacey and I had some papers we had to sign and mail to the University of Iowa so they could do the autopsy. Stacey got them pulled up and printed off. She filled them out and I signed next to her signature. FedEx scanned the document, put it on a flash drive and we were able to head on our way.

Kelley got me to Alyssa's and Kahlen was waiting for me at the door. It truly was the best medicine. I picked her up and carried her around. She's getting pretty heavy to do that with, but I didn't care. It was exactly what I needed. We cuddled up on the couch. We read Snow White and I laid her on the love seat. She went to sleep as soon as her head hit her pillow. I mean she seriously did.

I watched TV for a while. I couldn't sleep. I was completely exhausted, but my mind kept chugging along. Stupid mind.

The next thing I knew my phone alarm was going off. I had forgotten to turn it off. Damm... Alyssa came down the stairs with Paxton in one arm holding him like a football. He had a huge grin on his face. What a wonderful way to start the day. Kahlen soon woke up and giggles started filling the room.

We had breakfast, got cleaned up and it was time to go get my car. I gave Kahlen and Paxton hugs and kisses as they sat in their carseats. I got in my car and headed out for home. On the way I stopped at Target and picked up a few things. I wandered around the store for a while. I was in my own world. I looked at things for Paxton's birthday, and bought a few. After I checked out, I stopped at the Starbucks counter and ordered a tea. I knew caffeine was necessary to get home.

I heard someone say my name. I looked up. It took  me a second, but I recognized one of my good friends from high school. "David!" I said. I hadn't seen him in years. He had aged well. I realized I looked like a train wreck, but I really didn't care. We hugged and chatted for a few minutes. He asked what was new and I told him about Ben. We talked a few more minute and he left.

Driving home I was wondering about Dad. How much of what happened yesterday had made it into long term memory? How much did he comprehend? How many times in the future was I going to have to break his heart by reminding him his son was dead? Willie told me Dad woke up with a really bad back ache. Seriously, what more? I felt bad for Dad. I had made him stay with Ben longer than he really wanted. He had wanted to leave before Ben had died. I didn't take him. I wanted it to be real for him. I wanted it to sink into his long term memory. I felt cruel, but in the long run I felt like it was best for him. Better for it to break his heart once, than to break it over and over again. At one point, a little while after Ben had slipped away, I had to take Dad down to the bathroom again. When I brought him back I purposely set his wheel chair on the side of the bed Ben was facing. I wanted him to see his face, to make the connection. To not believe it was his brother Don in that bed.

I got home. I sat down and talked to Dad for a while. I told him tomorrow we would go and buy him a suit for the funeral. He agreed. We talked about a few other things. I could tell he was sad. It felt like he knew what was going on. Then he said something. Something that made me know he knew. I was glad of that, but it also broke my heart and scared me a little.

"I just don't understand," he started. "Here Ben had so much in front of him. So much to do with his life. So much more, and here I sit, a broken up wreck."

It was the first time he said something that had put Ben first. He said Ben's name. He knew Ben wouldn't be around. He knew his son had gone before him. All of that was good. Heart breaking that he had to go through it, but good. It had clicked into his memory. He was OUR dad again. However briefly our dad was back.

It also scared me. Dad and Ben were so close. Dad has gone through so much change in the last few months. He had his gall bladder out and his whole world changed. Ben was in and out of hospitals. He wasn't doing well and could no longer be expected to take care of Dad. He could barely take care of himself. Dad stayed in the VA nursing facility for nearly three months. He worked hard in physical therapy, thinking he was going to go back home. Then instead of going home he came to live with Willie and me. I think deep in his heart, he never thought it was permanent. I think he may have thought that once Ben had his liver transplant and got healthy again he would get to go home. Ben would take care of him again and he would take care of Ben. It was how it had been for years. My friend Dawn had said they were  kind of like an old married couple. Sniping at each other, but couldn't imagine life without each other. I know that sounds kind of weird, but you know what I mean. Now Dad has to imagine that life. I don't think he likes the idea.

Dad was there. The dad I thought was lost to us was there. For how long though? Would he be like the little old man who just lost his wife who passes away within a few months? Would he be able to process his grief, let it out and get through it? I can't help but fear that we will be having another funeral before the end of the year.

Good Bye Big Brother

I woke up this morning determined to take my dad to Des Moines. We were going to be a part of the planning at the funeral. Then we were going to go see Ben. 

I went down stairs. I fed the dog and the cat. I went into Dad's room. I listened. I heard the grumbly breathing. Undaunted I started gathering Dad's stuff together. I put his things to put his leg on next to him on the bed. I got his other shoe and his sock and put them next to him. I didn't ask him if he wanted to got to Des Moines. 

"We are going to go to the funeral home, then get some lunch, and then go over to see Ben" I told him matter of factly. He looked at me and the grumbly breathing got a little louder. I ignored it and kept getting things ready to go. 

"We are going to have a quick breakfast today so we can get going." I told him. I went out to the kitchen and got a bowl of cereal, five prunes and some grapes ready for him. When he came out to the front room I poured the milk on his cereal and brought it out to him. 

When he was finished and we'd brushed our teeth, I went in his room and got his wheel chair. The grumbly breathing got louder. I took the chair out the front door and down the steps. I came back in and told Dad I was going to move the car. 

I came back in and Dad was pouting. I ignored him and said 
"I'm ready when you are." 

He looked at me. He didn't get up. 

"I'm ready when you are," I repeated. 

"I'm ready," he growled. He still didn't get up. I looked at him. His face was mad. He didn't want to go. The grumbly breathing was very loud. 

"Well, lets go," I said cheerfully but firmly. He huffed, but he got up. 

We drove into Des Moines and went to the funeral home. I really wanted Dad involved in the planning. I wanted it to be real for him. I wanted him to feel involved in the process. I didn't want him to feel left out. We looked around the chapel. We looked at caskets. The funeral director guided us thru the process. 

When we were done there we went to lunch. We decided on Chinese food.  I had a gift card for a restaurant so we decided to go there. The whole way there Dad tried to get me to go to a different restaurant. I told him I didn't have a gift card for that place. I told him that seven times. We ate at the restaurant where I had the gift card. 

We got to the hospice house and found Ben's room. Two of Ben's friends were there, and my friend Kelley. Kelley had been sitting with Ben while Stacey, Dad and I were at the funeral home. She said friends had been in and out of Ben's room all day. I was glad. I knew we had made the right decision to bring him back to Des Moines. 

Ben was breathing hard, but looked very comfortable. He had on a white t-shirt instead of a hospital gown. It was so nice to see him in anything but a hospital gown! He looked more natural. 

Shane and Alyssa came. They sat down on the love seat in the room. 

We all sat and talked for a while. It was relaxed and comfortable. We told stories about Ben. We laughed. It felt right. It felt calm. 

Kelley had to leave. She said she would be back in the morning. She gave me a hug, and left. 

Another friend of Ben's came. She was a friend from church. She brought a Scrabble tile holder with the word lovable spelled out in tiles and glued on. "It makes me think of Ben." She said. 

Ben's breathing had become less regular. He was still breathing hard, but occasionally would stop for ten seconds or so. I checked his feet. They were cold and pale. His hands were still warm, but there was absolutely no grip. I grabbed a pillow, kneeled on the floor next to his bed and held his hand. 

Dad was starting to get uncomfortable. He was starting his signals that he wanted to leave. I didn't want to go. I was pretty sure that Ben wouldn't make it through the night. I called Willie at work and asked if he could come get Dad. He got it figured out and headed our way, but it was a two hour drive from Coralville. 

I went back into Ben's room and sat on the floor. I noticed his breathing was slowing and his  apnec periods were getting longer. It was closer than I thought. 

I kneeled down on the pillow again. I took Ben's hand. I stroked his hair.  His breathing was slowing even more. Every other breath was followed by a long pause. I watched his face with each pause in breathing. I stroked his hair. 

Ben took his last breath. His eyes opened, a reflex. I knew he was gone. I started to cry and hugged him. Right then Dad, who wasn't comprehending what was happening, told me to take him to the bathroom. I took him in and he sat down. I told him to give a yell when he was ready for me. I went back out to Ben. I kneeled back down on the pillow. 

The nurse came in and listened to his heart. She listened, Ben gasped one or two more times. She kept listening. "I don't hear anything," she said. "No, I don't hear anything anymore." 

Ben had slipped away from us. It was calm. It was painless. It was peaceful. He was free from the prison his body had become. He was no longer in pain. I kissed him on the fore head and cried. 

Dad called for me to help him out of the bathroom. I went in and started to back out his chair. "What happened," he asked. 

"Ben passed away," I answered through tears. I put him back at Ben's bedside. 

Stacey and I started making the hard phone calls. She called Father Basil. He was in church services, she left a message. I called our Uncle Chris. Before I realized it he was standing at the door of Ben's room. I called Joshua and Valerie, i could hear their voices break when i told them. I called Kelley. She turned around to come back. We called others. Stacey called the people in Ben's phone. I called Father Ignatius, the Father that had come and prayed for Ben so many times while he was in Iowa City. So many people to call. 

Arrangements were made to get Ben back to Iowa City for the autopsy. So many questions needed answers. We needed to know what happened. 

Kelley got back to the hospice. She hugged me for a long time while I just cried. 

Willie got to the hospice. I waited until he got there to tell him Ben had died. He held me and we walked down to the room. 

Father Basil came and did a passing of the souls service. He sang and prayed over Ben. When he was done he sat down and talked with us. He told us the story of when he meant Ben. He was sad to lose Ben. 

We sat and made more arrangements. Stacey called the funeral home and said we were ready for them to come pick him up. We decided not to wait for them. 

I walked over and kissed his forehead again. We gathered our stuff together. We slowly walked to the door. I turned one last time. "Bye Ben." And I walked out the door. 

Friday, September 6, 2013

Is Dad Still There?

I love my dad so much. He has always been there for me. He was always strong for me when I needed him. He has always been a rock.

The diagnosis of dementia is an evil, cruel and horrible thing. It steals away the soul of the person suffering from it. It gets harder and harder to for the person to be who he is. The once loving, caring, generous heart, changes. It becomes very inward. Only thinking of what is good for himself, not seeing what it does to the people around him.

My dad has started down that trail. He doesn't realize he is doing the things he is. I know he doesn't know that sometimes it just plain hurts.

Ben's sudden illness has severely increased Dad's confusion. The stress has really turned him inward. He only focuses on himself. Not his dying son. I am having a very hard time with this. I want Dad to want to be there with Ben. I want him to understand what is going on. That his one and only son, will soon no longer be with us. Selfishly, I want him to understand how it is affecting me.

I want to be there in Des Moines with my brother. I want to be sure that he is not alone when he dies. I don't want him to go into the next world feeling lonely in this one. I want to be with him for me. I want to hold his hand. I want to stroke his fore head when he moans. I want to be there. Dad doesn't understand.

I asked Dad today if he wanted to go see Ben in Des Moines once he was settled in. At first he said yes. I was so glad. I wanted to see where Ben was going to spend his last days and hours. I wanted to see for myself that it was a comfortable place for him. I wanted to see him resting, peacefully.

I went to get clean clothes to take a shower. I had just gotten home from being at the hospital all night. I was exhausted and in the same clothes from the day before. When I came down with my clothes Dad was doing his grumbly breathing.

Dad has a strange grumble in his throat sometimes when he breathes. The first time I heard it I called the home health nurse to come out and listen to his lungs. I wanted to make sure that he wasn't developing pneumonia. She came and listened to his lungs. They were perfectly clear. The sound was coming from his throat. 

As time went on I started noticing his grumbly breathing would come on before physical therapy was scheduled to come. It would start before his bath aid was to come. It would start any time he needed to do something he didn't want to do. It would get really loud when it was something he really didn't want to do. 

When he went to the doctor last month, I told the doctor about it. I don't want to just assume it is manipulation. She listened to his lungs, she too found them to be clear. The sound again was coming from his throat.

Still frustrated and not wanting to feel like my dad is manipulating me the way a child would. I have tried very hard to believe it is something real. It gets hard though when he looks at me like, ha ha, I got my way, when I give in to him when he is doing it. If I suggest something that I think could make it feel better, "No it's not thaaat...." he will start. Then he goes on to name off seven other things totally unrelated that are also bothering him. Anything to get out of doing what ever it is he doesn't want to do. I never knew when to believe him. 

On the day of Kahlen's birthday party, I came down stairs to get Dad ready to go. The grumbly breathing had already started. It was loud. I cringed. I just cringed. I had been looking forward to Kahlen's birthday party, since probably her last birthday party. I had made her cakes. Willie had asked for the day off, just so he could go too. I felt like I was going to cry. I knew what the grumbly breathing meant. Dad didn't want to go to his great grand daughter's birthday. It didn't matter that he knew how hard I had worked on those cakes. It didn't matter that he knew how much I wanted to go. It didn't mater that he knew Willie had traded around for the day off special to get to go. It didn't matter that if Willie and I didn't go, Kahlen wouldn't have a birthday cake at her party. All that mattered was that he didn't want to go. 

This wasn't the Dad I grew up with. This wasn't the grandpa that adored his grand children. This was a man that only wanted what he wanted. 

I called my sister. I told her what was going on. She said she'd come out to our house and stay with Dad. Thanks to Stacey, Willie and I BOTH got to go to our granddaughter's birthday. 

The grumbly breathing was very loud. Dad was looking at me like a little kid trying to get  out of going to school because he had a test. I knew we weren't going anywhere. I knew I wasn't going to get to see my brother again today.

I got in the shower. I took a long, long shower. As the water poured over my back, I thought about what I was going to say. How was I going to convince him his son needs him. That I need him. That Stacey needs him. I knew what ever I said, it wouldn't work. I wondered to myself, where Dad's right to say no ended and where my rights began. Are his wants and desires always more important than mine. Do Willie and I always have to give up what we want to do, if Dad doesn't want to do it too? I felt selfish. I felt ungrateful. He's my dad.

I came out of the bathroom. I asked Dad if he still wanted to go see Ben. "I wish I didn't have to go anywhere today." He answered. I said ok.

Ten minutes later Dad asked what we were going to do for lunch. I told him I'd make something since he didn't feel like going anywhere. "Oh, I don't mind going out for lunch...."

I didn't take him out to lunch. I told him if he didn't feel well enough to go see his dying son, he shouldn't be going out to lunch.

Was that cruel? I could learn to deal with Dad's dementia. It would be hard, but I could eventually get used to my brother being gone. Experiencing both at once, is agonizing.

I followed the EMTs as they wheeled  Ben out of the hospital. They stopped at the doors that led to the ambulance bay. I stroked Ben's head one more time. I kissed him on the fore head and said good bye. I felt like I might never see him alive again.

Dad's dementia may make that true.

Thursday, September 5, 2013

Family Traditions

Every family has their traditions. Some are good traditions. Opening presents on Christmas Day instead of Christmas Eve. Having a big old picnic at the park with family and friends on Labor Day. Making up a holiday like Let's All Pretend It's Spring Day and having a BBQ in the middle of January. All good and fun traditions.

Some traditions, well suck, and suck big time. For instance, going to kradgity  Aunt Agnus' stinky, dirty apartment, with 50 cats running around, every year on her birthday and having to kiss her on her whiskery cheek. And kiss all of her cats, too. Or having to go to Old Uncle Fergus' farm and eat dead squirrel every year on his birthday. Oh and be the one who has to shoot and skin the poor little squirrel, too. Both very sucky traditions.

My family has a tradition that is down right horrible. Horrible in a very unfunny and unamusing way.

As kids, you look forward to the holiday season. Thanksgiving with pumpkin pie. Christmas with presents and family. New Years Eve, getting to stay up clear until midnight eating all the chips and dip you want, and drinking Dad's New Years Eve punch. All very exciting and very special times for kids. Plus, Christmas vacation, not a bad deal. Oh, and birthdays, birthdays are always fun, even when it is someone else's. at least you get cake and ice cream! 

With the holidays came a lot of birthdays in our family, too. My mom's was December 20th, mine was the next day. Dad's was January first, a New Years baby. Ben's was January 19th. All of those bunched together. (My sister was the oddball, her birthday was in July.)

When I was in sixth grade my grandmother, who we called Gran was very ill. Gran had been battling metastatic breast cancer for a long time. Gran and Grandpa had traveled the country for years. They loved to travel and even continued when Gran got sick. 

This particular year Gran was in the hospital. The end of her life was approaching quickly. I had a cross neckless, that I can't remember where I got it. I really liked it, it was one of my favorites. We went to see Gran in the hospital a day or two after Christmas. I knew that she was very religious and I wanted to do something special that would mean something to her. I gave her my cross. She looked at me, smiled a very tired smile and thanked me. She gave me a hug. That was the last time I saw her. She died on New Years Day.

When I was in eighth grade, Grandpa had gotten sick. He had developed multiple myeloma. He declined very quickly. Mom said his heart was broken from losing Gran and he just didn't have any fight left in him. Grandpa had moved himself into a nursing home after Gran died to take care of my great grandmother, Nana. Nana had dementia. I barely remember a time before her memory became impaired. When Gran died, Grandpa took on the duty of making sure she had good care. Since he was alone, lost the desire to travel. I think taking care of Nana was just his way of beginning to shut down. 

In December he became very ill. He went into the hospital where the diagnosis of cancer was given. I can't be sure, but I think it may have brought peace to him. He would soon be with Gran again. My mother was angry. She could not believe cancer was going to take her father now, too. On December 21, my birthday, Grandpa passed away. He finally got to be with his one true love again. I cried in the kitchen. Urged on by my mom, I went to a birthday party that a friend was throwing for me that night. "Grandpa would want you to go."

A couple of years later, Grandma, my dad's mother, got sick. Grandma was a tough old bird. She was one of those little old ladies that would go out and shovel her own sidewalk when she was 85. I remember Dad getting so mad at his brother, Uncle Don, for letting her. He lived with Grandma. Grandma was pretty sneaky about it though. She would wait until Uncle Don was out of the house and then go out and do it. I honestly don't remember what took Grandma's life. I do remember it wasn't a prolonged illness. It seemed like, while she was very old, it still wasn't expected. Grandma had her wits until the end. Grandma died on Christmas Day. Grandma, according to my mom,  liked being the center of attention. She believed Grandma died on Christmas on purpose. Now everyone would remember the day she died. 

In 1988 when I was pregnant with Joshua, my mom became very weak. She had been a two pack a day smoker since college. She always said she took it up to make her dad angry. She wouldn't quit. "It is my one and only vice," She would say. "I enjoy it and I'm not going to stop." She never did. She became very ill with emphysema. Mom had no health insurance. She refused to go to the doctor. She got sicker and sicker over the years of 1987 and 1988. By spring of 1988 she was barely moving off the couch. Her appetite had diminished, but instead of admitting she was very ill, she convinced herself that she had become anorexic. She started trying to force herself to eat. She was losing weight at an alarming rate. She even started drinking eggnog, which she despised, because she knew it had lots of calories. She was trying to gain weight. 

She next started having panic attacks. Still refusing to go to the doctor, she also tried to home remedy those. I would tell her she needed to go to the hospital and she would say, "I'm not going to the hospital. What if they do find something really wrong? Then they treat it and charge us lots of money. I die, and leave your dad destitute trying to pay off all of the bills. I'm not going to do that!" 

At the end of May, in 1988, she couldn't breath. She was so weak she could barely move. Finally, she agreed to go to the hospital. One of her lungs was half destroyed by emphysema and the other was two-thirds destroyed. Her "panic attacks" were caused by her body's desperate attempt to get oxygen. Her weight loss was due to her body eating itself away to have the energy to breathe. On May 26th, 1988, Mom died, on her mother's birthday. 

Alyssa's birthday is on the 11th. 

Do you see the trend? Birthdays and holidays for a very long time were approached with trepidation for years. My brother was extremely affected by the trend. He had gotten to the point that he no longer looked forward to the holidays, and got anxious around upcoming birthdays. If Dad was in the hospital, he, and well, me too, would stop and think..... are there any birthdays or holidays coming up. If their were, an eerie nervousness would develop.

I have told my brother he is NOT allowed to pass on my daughter's birthday. Her birthday was forever changed already when she turned 11 in 2001. She doesn't need losing her uncle on top of it. I am hoping that his innate hatred of our lovely family tradition will keep him from carrying it on. I told him if he really does want to follow the tradition, Bazinga's birthday is today. Bazinga likes to share, he won't mind a bit.

Wednesday, September 4, 2013


Ben is much more comfortable today. Last night was tough. He was thrashing around in his bed from the involuntary, uncontrollable movements his own brain was mocking him with. At one point he had scooted almost to the end of the bed. His right leg hanging out at the bottom. It took the doctors a while to find that right combination of medicines to get him to this quiet state. Today they found it and he is snoring away peacefully, no more jolts at loud noises, no more flaying arms causing new bruises. Just calm. What we wanted for him.

Ben had several visitors this morning. Two friends from church and our Uncle Chris.  It was so kind and loving of them to make the two hour drive from Des Moines. They stayed for quite a while and we all talked and laughed and told stories of my brother.

I haven't always wanted serene quiet for my brother. We have had our ups and downs, like most siblings do. 

Willie and I were having some money problems at one point when our kids were young. We moved into the  basement at my dad's house where my brother also lived, upstairs. I had more than one argument with my brother during that time. Mostly over stupid things. It was stressful having so many people in such a small house. Disagreements were bound to surface. 

Willie and our family lived there for about two years until we got back on our feet and were able to get a place of our own again. During our stay there, we felt we owed it to Dad to keep the yard and house looking as nice as we could. We knew that it was VERY kind of Dad to help us out. It was stressful to him to have so many in the house too, though I do think he enjoyed having the grand kids around. 

We landscaped the front yard. Cleaned up the back yard and put in a fence. (Alyssa, two at the time, was quite the little billy goat and we were afraid she would climb right over a chain link fence. We put up a six foot privacy fence to help keep her contained.) We paved the gravel driveway and put in a new safer sidewalk for Dad. The neighbors across the street often commented on how much better it looked and how much they enjoyed seeing the new landscaping. 

Ben was not big on mowing. Dad had gotten to a point that, while he was getting around fine and doing well, mowing was no longer an option. I had told Willie as we were putting the landscaping in that it would all just go to pot when we moved out. Willie hoped otherwise. 

When we did move out, I was determined that the landscaping would not get grown over. In the late Spring I went to the house and the grass was a foot high. I was pissed. From that point on, I came over every two weeks to mow. 

The point was not lost on me that there was a healthy young man living in this house who was completely capable of mowing this lawn. And Dad had a RIDING lawn mower, come on! It torked me off a bit that I had to drive in from Booneville, with three small children, every other week just to mow the lawn. I must find revenge!

Ben was working nights at his job. He would get home from work sometime around 8:00 am every Saturday and Sunday morning. Let's face it, that would be a perfect time to mow. Not so hot, and good work out before settling down to sleep. Yeah, didn't happen.

One fine Saturday afternoon, I got my revenge. And yes, yes it was sweet. Very sweet.  The weather was nice, a beautiful sunny day. I started gathering up the kids to go to my dad's so I could mow the lawn. My mind was turning. I really didn't want to mow the lawn. I started getting angry again. Then like the oh so familiar light bulb one sees on cartoons, and idea popped into my mind. 

"Kids," I said. 'Why don't you see if Mary, Peter and Caroline can come over with us." They were the neighbors and my kids' best friends. They went and asked. A few minutes later, six kids came bounding back to the house.  

HA HA HAAA, my evil plan was in place. We got to Dad's. I went to the back yard to pick up sticks and such. The kids came running into the back yard. Ben's window was open.....

I gathered the kids around. I pointed to Ben's window. "You kids go play over there, loudly!"  Valerie was old enough to be a co-conspirator. She hustled the kids over to the window. I went and got out the lawn tractor and brought it to the back yard. The plan was in place. I started mowing and the kids started playing. It was a perfect blend of cruelty and revenge. 

About twenty minutes later, Ben yells out the window. Ben has always liked his sleep. "Make those kids be quiet! Why did you bring all of them?!"

"Because my kids wanted people to play with!" I yelled back. "If you don't like it, mow the damm yard yourself!" I didn't hear another word out of him. Nor did I ever hear another complaint, anytime I brought six kids over to "help" me mow the yard. 

Our uncle said his good byes to Ben. He was having a very hard time. It was very hard for him to see Ben like that. He left. Kathy and Jim were also ready to get going. They went over and said good bye. Tears welled in Kathy's eyes and she hugged me. Jim also was holding back tears and hugged me as well. They both left.

I ordered lunch. I sat down in the big, yet still not comfortable chair. I listed to my brother snore, and waited.


I woke up this morning full of hope for the day. Stacey was coming out to stay with Dad while I went to a doctor appointment. After my appointment I planned to go see my brother.

I was excited to go see Ben. I just knew in my heart that there would be something new today. There would be a sign that he was coming back to us. I couldn't wait to see him.

In my mind I just knew what I would see. Ben sitting up, with his eyes open. Not able to talk yet, but able to respond none the less. He would at the very least be able to open and close his eyes when asked.

At my doctor appointment, the doctor decided I needed an ultrasound. While I wasn't surprised, it irritated me. It was going to be that much longer before I'd get to see my big brother.

When I finally got to leave the office I got in my car and headed to the hospital. Some where along the way I missed my turn. I had to get turned around and get back to the street the hospital was on. Five more minutes wasted.

I finally got to the hospital. I got on to the elevator. I got more excited and filled with hope. I got to the floor Ben was on and hurried down the hall. I just knew what I would find. I just knew Ben would be on the road to recovery.

I got to Ben's room. I peeked in. His arms were still moving in the aimless manner they had been. My heart started to sink. I entered the room, still convinced I would see his eyes open. They weren't. He just doesn't know I'm here, I told myself. I walked up to the bed. I put my hand on his forehead. "Hi, Ben," I said brightly and hopefully. There was no response. I tried again. Then again. I begged him to open his eyes. He thrashed around, but his eyes would not open.

I knew.

A neurologist came in. He explained that taking Ben off of the metronidazole was worth trying. He had been off of it for over 48 hours. If there was going to be any improvement, they should have seen something by now. While Ben presented with many of the symptoms seen in metronidazole toxicity, one symptom was missing. A classic symptom. Along with lesions on the corpus collosom, there is usually a lesion on the cerebellum. Ben didn't have that. It was most likely that metronidazole toxicity was not the issue.

Ben's condition would not improve. He would need skilled nursing care for the rest of his life. He would never regain any of his previous abilities.

I realized at this point that I was being prepped. I was being eased into what was yet to come for the day. The doctor left.

I begged Ben to open his eyes again. I tried to make out words in his moans. I wished to see purpose in his movements. None of these things happened.

Ben's nurse came in. She asked if the doctors had called me. I told her no, and she said she'd page them to let them know I was here. They wanted to talk to me. A spark of hope came across my heart. Maybe they had a new idea, maybe they had a new treatment to try.

Two female doctors came in. They introduced themselves and asked me what I understood about what was going on. I told them. They started telling me that Ben's blood pressure had been very low. They had been giving him fluids, but his kidneys were not tolerating it.

I knew what was next.

I stopped them and asked if I could call my sister and put her on speaker phone. I knew she needed to be a part of this conversation. Luckily, she was still at my house. Willie had just gotten home and could stay with Dad. The doctors said they could wait until she got here and have the conversation in person.

I know in my other posts this is where I would put in a story about Ben and I as kids. Something light hearted. Something a little silly maybe. Tonight, I can't think of any. My heart is broken. All I can think about is the last time Ben was at my house. I was cold to him. I was only half listening to him. I was trying to get Dad to bed, and Ben was hanging around longer than I thought he should. All I could think about was him leaving so I could get Dad comfortable for the night. I was rude. I was a terrible sister. 

The doctors sat down with us in a conference room. There is never anything good that comes from sitting in a conference room with doctors. Tonight would be no different.

Ben's kidneys were shutting down they said. His blood sugar had been spiking because his pancreas was also shutting down. They were very kind and very gentle as they told us. His liver was continuing to fail. He was not a candidate for dialysis. His quality of life would never improve. He was no longer qualified for a liver transplant. The feeding tube was probably causing more pain than hunger would. His movements were no longer voluntary, they were due to the disruption in brain patterns due to the lesion in his brain.

It was up to us what to do next. They could continue on as they have been. They could keep sticking him with needles, keep feeding him through a tube. A tube that was irritating the inside of his nose to the point of it bleeding. They could keep playing the balancing game between his blood pressure and his kidneys. His sodium levels were also spiking due to the failing kidneys. They just couldn't keep up any more.

As I've said before, Ben hates needles. This body, this shell, this prison that Ben was in was not going to change. We could prolong his torture, or we could let him go. We could put the decision in God's hands and Ben's. We could give Ben the final decision of when he would slip away from us. He deserved that.

Stacey and I went out to the garden area outside the hospital to talk. There was a little pond, colorful flowers, and benches. We talked. We called Willie and asked him to put the phone on speaker so we could talk to Dad. We explained everything in terms he would hopefully understand. He seemed to agree that what we had decided was for the best.

We went back up to the floor. We met with the doctors again. We decided to let Ben be free.

The doctor came in and took out the feeding tube. The IVs would remain. They would be used to give him pain meds. Once the IVs failed though, new ones would not be put in. There would be no more needles in Ben's life. His foley catheter would stay to keep his skin from breaking down any further. He would be made as comfortable as possible.

Monday, September 2, 2013

A Glimmer of Hope

Saturday Ben was moved out of the ICU. Not because there had been any great improvement, but he seemed to be no longer declining.

With the new room on the new floor, came a new group of doctors to work on his case. At first I was a little frustrated by that idea. I had to tell the new doctors the whole story over again. They asked questions I couldn't really answer about the first few days when he was in the hospital in Des Moines. I answered the questions I could.

One of his new doctors was a resident from Spain. He seems to be a very gentle soul. He found a way to talk about whether it was time to make Ben a do not resuscitate. He spent a lot of time talking to me. He seemed genuinely concerned not only for my brother but for the family as well. He started talking about the possibilities of what still might be causing Ben's condition. He was confused about what exactly might be causing it but I got a definite sense that he was determined to figure it out.

When we were kids, our parents didn't have a lot of money. We got by, but there was rarely money for extras. There was no health insurance. When we got sick, there was very rarely a trip to the doctor. I only remember twice, when I was a kid, when I went to the doctor when I was sick. 

One day when Ben was in high school, I think, he came down with something. We didn't know what. All I remember for sure is that he was in pain. He was in on his bed, bent all up in a fetal position, moaning loudly. I kept peeking in his room to make sure he was ok. He looked awful. 

Mom and Dad were in the living room trying to decide what to do. They wanted to take him to the hospital. They talked back and forth. At some point I realized that the hold up, wasn't that they didn't want to take him, but they couldn't afford a trip to the ER. They argued back and forth. My dad was ready to take Ben, Mom said we should wait a while and see if he got better. 

I went back to my brother's room and watched him. He was pressing his arms up against his abdomen and crying out. I looked back to my mom and dad and they were still arguing. There just was no money. No way to afford it. He needed to go. He was very ill. He didn't have a fever. Let's wait it out. They continued back and forth and back and forth. 

I went out to the living room and yelled at them, "he needs a doctor, he needs to go to the hospital!" Tears were coming from my eyes. My mom looked at me. She grabbed me and hugged me. 

"He's going to be ok," she said calmly, "we just have to figure out how we can work this out." She hugged me again and sent me off to my room. 

Somehow, I still had my birthday money from Gran and Grandpa. It was twenty dollars. To me that was a LOT of money. Surely it was enough to make a difference. I went to my dresser. I got my money out of its secret hiding place. I looked at it. I went back to the door and peeked in at my big brother again. I looked at the money again and thought of the stuff I could buy with that treasure trove. My brother cried out again. 

I went out to the living room. My mother looked at me and told me to go on back to my room. I held out my hand with the money in it. "Is this enough?" I asked. 

Mom looked at me, a smile came across her face. She looked proud of me. "No, honey, that's not enough. You keep that it is yours." 

" I know, but if it will help..."

"No, you keep your money," Dad told me. 

Dad took Ben and they went to the hospital. 

Sunday night Stacey went in to the hospital. She met the Spanish doctor for the first time. He asked her if Ben had been on metronidazole before his hospitalization. Which he had, many times since February. He had read a study that metronidazole toxicity could cause the same symptoms that he is having. Including the lesion on his brain seen on the MRI. He had taken Ben off of the metronidazole. He seemed reservedly hopeful that maybe, just maybe this could be the problem.

After hearing this from Stacey, I took to the internet. I found a case study of a 57 year old with cirrhosis of the liver who had been treated with metronidazole, for a different reason than Ben. The man in the study had come down with the same symptoms as Ben, including a lesion on the corpus collosum. Once taken off the drug, the man started to react within two days. His symptoms started to fade. In six days many of the symptoms had cleared. It took him a month to get completely back to normal, but he did. AND the lesion on his brain, it disappeared too.

Maybe this was it! I debated whether to tell dad. I didn't want to get his hopes up and then find out that it didn't work. Dad had a hard time when we were there on Sunday. It was getting harder and harder for him to see Ben in such pain. When we got home, I could tell he was depressed. I went to bed, and didn't say anything.

This morning I got up and decided to tell dad. He hadn't slept all night, he was still very sad. He deserved a little hope. I was very clear that it might not work. It might not help, but it might. If it did, I told him, we might even be able to see a little difference today. His eyes sparked a little, he perked up and wanted to go see Ben.

When we got to the hospital he did seem different. Wishful thinking? Maybe. He seemed angry. He looked pissed off. He still seemed to be in pain, but he seemed to be fighting. The moans were different, too. Some of them were more from the throat instead of the sinuses. His tongue seemed to be trying to form words. Maybe we were just seeing what we wanted to see, but he did look like he was fighting. Like he was trying to punch his way through a wall that was keeping him from communicating. It was very different from previous days, even just yesterday.

Dad left the hospital sitting up a little straighter in his wheelchair. He seemed to have a little more hope. Maybe his son would still out live him. The way it's supposed to be.

Sunday, September 1, 2013


Yesterday the doctors started talking to us about changing Ben's status from full code to do not resuscitate. We had been expecting it, but it still seems surreal. Stacey and I had been starting to discuss it, both between ourselves and with Dad for a few days. It has been so hard.

When I went to the hospital yesterday, Ben looked different. He didn't look comfortable. He looked sadder. He wasn't resting. His moans had gotten louder and the tone had changed. Gone was the calm reaching for the sky, like he was looking for something.  His arms  were now crossed over his abdomen in a guarding way. He was obviously in pain. A lot of pain.

I tried to comfort him as much as I could. I talked to him. I read messages from, oh so many, well wishers and friends. So many people praying for him. So many nice things being said about him. I read every single one. I turned on his music. I stroked his head.

When we went on vacation as a family we quite often went to South Dakota. My mother loved South Dakota. I remember going there a few different times as a kid. I know we went to the normal tourist places, Wall Drug, The Badlands, Mount Rushmore. We went to them all on one vacation. 

On another vacation Mom wanted to hit the road less traveled. She was a history buff. One of her favorite places to roam were grave yards. We went to a lot of Native American burial sites. I can't remember for sure which ones, I was maybe six or seven. I remember spending a lot of time at the sites as my mom read each and every stone. 

Somewhere along the way, I got sick. I was throwing up, had diarrhea, the works. We were kind of in the middle of nowhere when it struck. I was usually stuck in the middle of the back seat of our tiny corvaire. I do remember being by a window for this particular trip. I can't remember if Ben or Stacey let me have their window seat. I just remember lying in the seat, with my head on someones lap, and occasionally leaning with my head out the window. I was miserable. 

Mom wanted to go to the Rosebud Reservation. In Rosebud we stopped at a drugstore. We went in. My mom was by my side and my brother was following behind. I felt like he was back there making sure mom got something to make me feel better. He was protective of me as a kid. Though he may have just been tired of the smell of my puke. Either way he was there. 

Mom asked the man in the store if he could recommend anything. The man was a Sioux, I'm not sure if he was Dakota, Lakota or which nation he belonged to for sure. He looked middle aged to me, of course at six or seven a 29 year old looks middle aged. He said he could make something for me that would make me feel better. My mom took him up on it.

I have no idea if the nice man was a pharmacist, or a doctor, or a medicine man. My brother seemed very skeptical of the man. He looked at mom like she was crazy to give me something from this very nice but still a stranger, that she found in this broken down store. 

The man brought out a bottle that looked like a bottle of Coca-Cola. It wasn't labeled as Coca-Cola, but the shape of the bottle was the same. The man encouraged me to take a drink. I looked at Mom, and then at Ben. Ben looked at the bottle and whispered, "Mom..." under his breath. She shushed him and told me to drink it. I looked at the bottle and put it up to my lips, looking again and Mom and Ben. Ben was shaking his head, while Mom told me to just drink it. 

I took a small sip, expecting it to taste like something a wicked witch had brewed in a cauldron. It didn't, it actually tasted good. It tasted like a thicker version of Coke. A little more syrupy, but not bad at all. I drank as much as the man said to and stopped. He told my mom to give it to me every four hours until it was gone. 

After the first dose I was feeling better. Not perfect, but better. We went on our way. We had a long drive ahead of us. In an non air-conditioned car, in August, if I remember right. 

As we went down the highway it was time for another dose of the mystery medicine. By this time it was warm. It wasn't good warm. It had gotten thicker. It was harder to swallow, but swallow it I did. 

Another four hours down the road in a hot car. Another dose due. Mom gave it to me. I started to try to take it. It was hot and very thick by now. It no longer tasted like Coke, it now tasted like hot molasses pretending to be Coke with a cough medicine after taste. I gagged trying to swallow it. Mom yelled at me to drink it, "It can't be that bad," she sneered. Ben tried to stick up for me and was glared down. I tried again to swallow it and gagged again. 

Mom was really mad by this point. She grabbed the bottle from me and threw it out the window. I cried that I was sorry. Mom just glared. 

To this day, I do not drink Coca-Cola.

Ben did not quiet as I stroked his forehead. Up until this point, when he was moaning, I was able to quiet him that way. The pain was too intense. I kept trying. I started to weep.

I came home and told dad how Ben was. We talked again about what he would want. If his heart stopped, would he want to be brought back to live in this condition. Dad's face went very sad. He had had a bad day with his memory. Willie told me he had been very confused all day. He was again referring to Ben as his brother. He was again mistaking the situation.

When I talked to Dad, he snapped back into the present. He understood what and who I was talking about. I was preparing him to make probably one of the hardest decisions of his life. How do you make a decision like this about your own son.

Today Stacey came out and we all talked. We know Ben would not want to live like this. He may be able to tolerate not being able to move, if that were the problem. Not being able to communicate, to talk, to be understood? Not even be able to write, or type, no ability to communicate at all, possibly ever again? That is NOT my brother. That is not him in any way. If his heart were to stop, would he want heroic measures to keep his body alive? A body that is so tired, and that is failing him in so many ways at once? Would he want a tube shoved down his throat to make him breath? Have someone beat on his chest, possibly breaking his fragile ribs, and shocked and shocked again to keep his big, loving, kind heart pumping?

We talked for a long time. We all knew what Ben would want. It may not be what we would want, but we needed to leave it to him. We decided not to give up all hope. We would ask the doctors to keep treating him whatever way they could. Keep trying to figure this out. However, if his heart stops, if his breathing slows, no heroic measures are to be taken. No beating his chest and breaking his ribs. No intubation and respirators. No zapping him.

 If he starts to peacefully slip from our lives, if his very ill, very tired body begins to fail him, we will let him go. We will let him go to meet Our Lord that he loves so deeply. We will let him go to be with our grandparents and mother. If he slips away from us, it is only a body that will leave us, his big, kind loving heart will live on in each and every person he has touched.