Wednesday, October 7, 2009

Thursday October the 8th

October 8th, 2009. The day i lost my wife and my kids lost their mother. I'll never be able to see that date again and not feel the pain that we experienced today. At 150 am, Marilyn ended her ALS struggle and went home where she is using her new body, one that walks and runs, skips and jumps, and waits in anticipation of her reunion with her family.

You need to know she continued the fight until the end. She told everyone she would. She fought for another day to spend with her family, not because she feared the future, she new her future was bright. She got a glimpse and we saw it as she passed as she looked up toward heaven. But that did not stop the mortality from trying to hang on to itself and cling to what is known over the future. She fought the good fight. She finished the race.

I have to tell you that i have not been able to see God in this situation. This cruel joke played on this family 10 times. Except it is no joke. Until last night. Lauren was not supposed to be here tonight. She was. Marilyn's closest friends were not supposed to be her tonight. They were. We were blessed with an angel from Hospice who loved my wife til the end. Marilyn passed surrounded by her kids and husband, her best friends and an angel from hospice. God was here in that.

When i got home this am from making some arrangements, i opened my door to find 80 shoes littering my entryway. In the living room and kitchen were the 40 or so owners of the shoes who had surrounded my son to comfort him as he grieved the loss of his mom. Marilyn would have loved that. Just as her army has surrounded us through this, another regiment was taking care of Brian.

I want to thank you for letting me share this journey with you. Another movie, the Green Mile, helps to explain what this blog has meant to me. In this movie, an inmate convicted of a murder of two young girls that he did not commit, is able to see and experience all the evil in the world. He is burdened so much by what he can see it hurts. At one point he grabs one of the guards who happens to be tom hanks and shares the experience of what he can see with hanks. It is the terrible experience of seeing these two young innocent girls being taken. He grabs hanks hands and shares what he sees. After it is done, he said, It was too painful boss, i had to share it. That is what i had to do here. It was too painful i had to share it. Thanks for letting me do that. Thanks for sharing in the pain.

Marilyn will have viewing at Hawthorne Funeral Home Sat 10-4 and Sun 12-4. For directions, follow this link. or from I-5 take exit 227 (college Way) go eastbound one mile to 18th Street. Hawthorne Funeral Home is on the left just east of 18th St.

Marilyn's Memorial service will be held Monday October 12th at 3pm at the Mount Vernon Christ the King Community Church. Service will be closed casket with viewing at the closing of the ceremony. For directions - From I-5 take College Way and go East. Turn North onto Riverside Drive. Our Building is on the left before you get to the bridge. 2111 Riverside Drive

May Marilyn Rest in Peace.

Wednesday October 7th

I woke this am to find mare being taking care of by marge and cori. They said she had another pretty good night. Her body may be going but her mind is still so sharp. She knows everything that is going on in that house. Despite her battle, she remains so dang optimistic and in a relatively good mood when her body allows her a break from the discomfort. I asked her after the ladies left how she could be so cheery despite her circumstances. She turned her head slowly, looked up at me like i was stupid and said, "because im stoned."

Mare has been having us put up all the pictures we take next to her bed. She loves to recount every memory and allow it to linger. She smiles when looking at them. Many of the cards you have sent are there too. It is a visual reminder of her army surrounding her. She feels you.

She just woke up and told me she was jittery. Like everything was spinning around her. I asked if she wanted a hit and she said no, "just hold my hand." Back to sleep again. I hope she can escape this in her sleep. I hope she is able to find some happy place that knows no ALS.

I have been thinking about one of my favorite movies, Shawshank Redemtion. I find myself identifying with the main character Andy Dufresne. I know this is going to sound a little egocentric but it is what it is. Andy is convicted of a double murder he did not commit. One of the victims being his wife whom he loves immensely. He is sent to shawshank prison for life. While there he has to undergo all the tortures of prison life. While in prison, he is somehow able to not let it get to him. I'm not saying this is not getting to me but i sometimes feel like i am numb to the realities as he was. He plans an escape but has to crawl through a sewer that reeks of raw feces to do it. He gets out and takes care of a friend he met in prison before going off to his place that knows no memories of his former life. It is a beach in Mexico called Zihuatanejo. I have been wondering where my Zihuatenejo will be when this is all over. I hope marilyn is on that beach as she sleeps.

May she have a restful and peaceful sleep.

Get busy livin or get busy dieing - Shawshank Redemtion

Tuesday, October 6, 2009

Tuesday October 6

Yesterday mare had a huge decision to make. It is another step in the ALS journey. To go on the drip is one step closer to the end. Not giving up, but using the tools available to fight back the onslaught of ALS.

Mare made the decision to go on the drip after asking me, our kids and gpa and kay. She is holding on to each day and would not have made the decision if the doctor had not recognized her desire not to give in and meet her half way. She is on a low dose that allows her to stay alert but gives her the ability to give herself a bolus or another "hit" of the medicine for those tough moments. When the nurse was here telling mare how it would work and that she had the ability to give her self some more if needed mare said, "you mean if i have visitors and dont feel like visiting i can give myself a hit and go to sleep?" We all laughed.

Mare slept well on the drip as Carmen and Lynn watched over her. The day did not go as well. Her body is starting to shut down from lack of oxygen and is causing normal bodily functions to be more painful. It was a tough day on all of us and tough enough that Mare requested no visitors. She was pretty short with all of us and then apologized for doing so.

Thanks for coming up and brightening the house lauren, and for the hug. I needed it and I love you. Thanks for the flowers that were left on the porch. Mare loved them. Thanks for the books mona, i love that author. Thanks to all my lake stevens friends who have called, emailed and texted me to give me a phone hug, laugh or just to let me know they are still with us. Thanks to my help gpa and kay who allow me to escape this for a brief time each day. Thanks to John and bob for taking me out for pizza and beer. Thanks to all my tennis friends that help me escape. Not fair that i can and mare cant. She said yesterday that she wanted to wake up and have it be yesterday.

Thanks to all of you for hanging in with us. Thanks for praying she will have a restful and peaceful sleep.

Monday, October 5, 2009

Sunday & Monday October 4 & 5th

Kathy, Mares sister and her family were up for the weekend. That means we ate well. Uncle Paul put a pork butt on the traeger which we smoked over night. It was incredible. I carved out enough time to put in an appearance at a benefit tennis tourney for a tennis friend of ours who passed not long ago. He played in Mare and Johns tourney just a year ago. Had an aggressive cancer and we lost him. Many of our friends were there. Along with Pam who just lost her husband John from cancer. She came to the fence and we said hello. I really wanted to hug her but i knew we would both lose it if we did. I'll save that for later.

Mare had three night angels from St. Joes. They had to ring the bell at around 430 as mare was having major breathing issues. We did our best to comfort by administering more meds. I was able to get back to sleep for a little over an hour and half and it happened again. I came down and the scenario played out again. At this point we changed her mask to the full face to see if that helped and it did. Trouble was we could not communicate as well. We got out the pointing board that Mary Rebar had given us to see if that helped and it did somewhat. Only trouble was there was not a space to point to that would make this all go away. I had made and poured myself some coffee. Mare keeps tying to tell me something and nods her head toward the nurses. She wanted to make sure i offered them some coffee. I love that woman.

I called Lynn over as the others left and she had another episode. Same routine. We called gpa and kay as mare wanted them here as well. They are currently holding her hands as she sleeps. Leanna our hospice social worker came this am too. We talked about how hard mare is fighting to live but her body is wanting to go the other direction. We discussed the drip meds that will make mare sedated but comfortable. She asked what i and the kids wanted. We want her to be comfortable. She said maybe she'll feel better when she wake up. She said, "We can always hope cant we? Again in that cute voice. :) Lauren is on her way up. Such a strong and courageous kid like her mother. Bubba too.

I hope i am not sharing too much. I know so many of you have been here for us this entire journey. I wanted you to complete it with us as well.

Please pray that Mare gets a glimpse of her wondrous eternity. And may she have a restful and peaceful sleep.

Sunday, October 4, 2009

Saturday October 3rd

I'm not sure who it was, but someone mentioned the other day that it takes a village. It takes a village to do what we are doing. Without getting political and being slightly to the right of Attila the hun, i was not a fan of the author of it takes a village nor its premise. But in this context, it certainly does take a village. We could not do ALS without all of you. We continue to get meals dropped off every other day. We continue to be supported in ways that dont make sense. I continue to be humbled, by all those that are willing to support us financially. My auntie, thinking about my mental state, sent me two books by an author who she thought would make me smile. Would make me smile. The fact that she would think of that makes me smile. Thanks Mona. Little smiling happening around here. Until i talk to mare.

She continues to make the best of an impossible situation. She continues to choose to be positive in a situation that calls on all that is human, to be pissed at the hand that has been dealt. I know i am. I walk around pissed most of the time. Pissed at what has been taken from me, what has been taken from mare. She continues to be a shinning light. Continues to live in the moment, for all that is worth living, With that cute voice.

We were surrounded by family and friends this Saturday, Kathy, Mares sister, was up to take care of her sister on Friday night. I had gone to a play with lauren, and came home late. Kathy came up to love on her sister and me. The fact that Kathy was here allowed me to get some much needed sleep.

On Saturday, we had visits from vince and cheryl hughes and and dave and eileen moreland. I escaped to play some tennis. Tennis has always been a huge part of what i do, but now is an escape, a place to hide from this hideous disease. A disease that continues to rob of us our mother, wife, and family member.

May she have a restful and peaceful sleep.

Saturday, October 3, 2009

Friday October 2

Lynn Walker looked after Mare as her night angel last night. It was uneventful. The medication modifications seem to be doing the job. She sleeps a lot more now. Grandpa and Kay take turns sitting with her as she sleeps. Not much else to report today so i will pass on part of a card mare got.

And so Marilyn... The miracle we have all prayed so hard for may not come to be, but what i have realized, especially over these last few months, is that you and the way you have lived your life has been our miracle..... miracle Marilyn!! You have shown us all the three greatest gifts in life - faith, hope and love. And Courage beyond belief. We love you Marilyn.

Yes we do - may she have a restful and peaceful sleep.

Thursday, October 1, 2009

Thursday October 1st

Holly. aka Wonder Woman, was Mares night angel, Mine too. Not long after Holly left. Mare had an episode. You experience ALS in all its many facets and then you think it cannot get any worse. And then it does. Up to this point, mare had some breathing difficulties but this morning she really had trouble. It was so hard to see your spouse gasping for air and asking you to help her breathe. I could do nothing except give her medicine. I felt so inadequate. I thought for sure i was going to lose her right there and then. After she caught her breath she wanted me to get in the bed and snuggle. I told her that there is not enough room but i would just hold her. On the medicine and with the mask she has this really sweet, cute voice and has these little voice inflections that make me smile. She looked at me and said with that voice, "I'll scoot over."

The doctor and nurse both came out later in the day. They suggested mare up her dose of Ativan which helps with her anxiety and air hunger. Marilyn agreed to increase her doses from .3 to .5 ml. We had drawn up a bunch of .3's already so the next time i gave her medicine we gave her .3 and then .2 of the other which left .1 in the syringe. I asked her what to do with the left over. She said without missing a beat, "put it in the dog food." For those of you that know our little sadie, you get it. She is a tad bit ADD. I laughed til it hurt.

On top of everything else, mare has had this tummy pain. The doctor was tying to figure out what that was and came to the conclusion that she might have a kidney stone. She has a history of them and it is acting just like one. The treatment is pain meds and lots of water to flush it out. They are coming over friday to run some water through her pic line to see if that will help.

Dr. Paul also discussed sedation therapy for Mares air hunger. He explained to mare how most people with respiratory distress like she is experiencing decide that to avoid that feeling, they go on a drip of ativan at a low dose. Once on this therapy, you are pretty much out of it and sleep most of the time. She has said all along she does not want to go that route but after this episode, she listened to Dr. Paul and said she would consider it. A part of me wants her to do this so she is comfortable. Another part does not as i would not hear that cute little voice tell me again, "'i'll scoot over."

May she have a restful and peaceful sleep.