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 . 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 . 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 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 . 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 . " Posted by 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 ! 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 . 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 . 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 ! 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 . 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 . 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 gBecky Berry 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 . . . . " 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 . 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 . 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 thaI 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 . 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 drivBen 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 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 . 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 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 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 . 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 . 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 " 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 . 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 . 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 . I am a self proclaimed artist and photographer , but will never make any money at it because , lets face it not many people get that chance . But thats ok , because it means my art is all my own , not what someone else wants it to be . Although , I have recently made a little money painting windows , which has been a lot of fun . I love my family more than I would have ever imagined . That is the one constant in my life . I am a wife , mother and grandmother . Even with every change that comes along , no matter how far I am from them , my family is my life . Please know that all of the text and photos are copy right protected . All rights reserved . Not to be duplicated or used in anyway with out express permission of the author of this blog I know It has been forever since I posted . I just haven 't been able to find words to write . It 's not that I haven 't had . . . Stroganoff . What does stroganoff have to do with Tucker the Pig . . . well , I 'm going to tell you . If you are a great foodie who loves his . . . 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 app . . . Yesterday , I decided it was time . I 've lived in this house for a year and a half now . The room has been there the whole time . I peake . . .