Friday, August 28, 2009

Thursday Aug 27th

Today was uneventful. That does not mean it was not emotionally draining. You see, ALS is a slow, PROGRESSIVE disease. It doesn't get better, it just gets worse. Apart from Divine healing, it is not going to end up rosie. I am struggling with the Divine in all this. How does a loving God allow this to take place in the life of one of His own? I guess without an eternal perspective you cannot get your arms around this. I have to admit, i'm a little pissed off about all of this and have been for some time. I know that Mare has affected many people and her grace in all of this does spell G-O-D. I just don't feel it. I have no desire to be a part of it. Enough about me. This is about her.

Mare's lone appointment today was with the massage therapist. Hospice supplies a message once a week for mare and her caretaker. Unfortunately for me, i was unable to take part today so Gpa's wife Kay was the lucky reipient of the half hour rub.

We were to have family time today. Lauren is still a little sick so she stayed away to protect her mom. I'm moving her to kirkland tomorrow to move into Northwest university.

I went to practice today. It is a struggle now everyday to know what to do. Do i leave her? Mare is really struggling to breathe on her own so i dont know if i should leave. My daughter has told me we need to continue living regardless of this disease. I guess as long as i am ok with my relationship to mare i must continue to do my stuff. I have no regrets. I have and will continue to take the best care of my wife that i can. I am no good to her if i dont stay mentally healthy.

We decided to invite the walkers over tonight. We have many close friends and the walkers are two of our closest. Bob is considered to be the other woman in my life. Ok, that may sound a little weird but it is all good. I am lucky to have such a good friend. I only wish he wasnt so good at cribbage. He took the cup back tonight.

Putting mare to bed is so weird. Will it be the last time? That is what goes through my head every night. I kiss her and tell her i love her. I try to make her comfortable. She asks me to move her pillow just right as she cant do it herself. I have to get her arms just right as she cant do it herself. I have to move her legs just right as she cant do it herself. I have to get her mask on just right as she cant do it herself. I have to scratch for her as she cant do it herself. I'm not complaining, i will do whatever she needs. I just want you to know what an amazing lady she is as she doesnt complain. Hardly ever. Yesterday, she was trying to get something just right and said, "i just want to move." Can you imagine not being able to move? How does she do it and stay so fricken postive?

I want to officially go on record and proclaim loudly and forcefully that i HATE ALS! I hate everything it has taken from Mare.

May mare have a restful and peaceful sleep.


  1. Dear Jeff and Marilyn,
    Thanks so much for opening your hearts and lives to all of us teeny earthly beings. You are ever present in our thoughts and prayers and I can't help but believe we are all preparing for the eventual irrevocable transition to the life beyond through your efforts at sharing this most humbling, painful, and bittersweet experience.
    We so wish you weren't having to deal with this loss at this time but please know your love and courage is giving strength and perspective to all of our journeys.

    John Carl sent me a prayer/chant when Bjorn left for Iraq recently. He encouraged me (as he always does) to keep a happy and peaceful mind. As you may know, he is struggling for his life right now, and for all of us---we pray for the eternal peace and happiness that is deep in our hearts and keeps us ever close to our true divine nature no matter the circumstance. Blessings to you both as always.
    Love, Ellyn and Terry

  2. Jeff, thanks so much for your honesty and for sharing your anger and pain. I cannot begin to imagine what you are going through. We love you. This morning as I was praying for Marilyn, the phrase that kept going through my head was... "when we've been there ten thousand years..."
    Love and prayers,
    Bill & Lois

  3. Jeff-I too struggle with anger, sadness, grief. Why did God bring Mare and I together all those 35 years ago for me to love her and now take her away? She has always been my "good and beautiful thing" (that's the lost little girl talking). I keep thinking about the phrase "For such a time as this..." I know it's from the old testament...A time to laugh...a time to cry...(maybe Soloman?). Anyhow I just can't seem to get past how sad I feel. I get these little glimpses of peace sometimes but then the grief and sadness keep coming back. I think about you, Frank, Brian, Lauren, Gina, Kathy, Lynn, Carmen, Marcia, all that each of you have already lost and now Mare. Sorry, Jeff, I am not much of an inspiration. I am a copatriot in this grief. I love you all more than you will ever know.

  4. Jeff-what a wonderful husband and support for Marilyn you are! I can't even imagine what she is going through no one can say they do unless they've been thru it themselves or with a loved one. It's good for you to express your anger, and question why God would let this happen to one of His own, we'll all know when we meet our Maker, there is a reason for everything that happens good or bad!

    My daughter Katie is attending NW in the Nursing program but living at home. Is Lauren going to follow Marilyn in Nursing? You must be so proud!

  5. Jeff, Mare, Lauren, and Brian,
    It's ok to get angry. There are all those steps of grieving to go through.You have to do things for YOU and it's not being selfish. You are right in saying that your mental wellness helps you take better care of Mare.
    Right now, I am numb, on the verge of accepting, but not quite there. I have fear....fear that I won't be able to say goodbye. I know she knows how much I love her, but I need to know when she's ready....just like Morrie. Knowing she's ready makes us step into acceptance. Jeff, call me for anytime. I can't repeat that enough. Also please tell Mare that my other friend, Betty Anne, will die soon of lung cancer (please, anyone reading this who smokes.....STOP!!!!) Hospice has been called in. Again,I am's always harder for the ones left behind. But what an awesome place Believers are going to....I personally can't even imagine how perfect that will be. Jeff, you and the kids will be ok. We will help carry you through this. We love you. Give my girl a big hug and kiss for me, and a good foot rub too.

  6. Marilyn & family,

    I can't imagine what you all are going through, or have been through this past year since Marilyn's diagnoses. I hadn't talked to Marilyn in over 20 years until a few months ago. Marilyn, I can imagine the person you have grown to be, you were awesome back then. I saw your youtube video, your amazing, truely amazing.
    Your all in my prayers, and thoughts daily.
    Mary A.

  7. Jeff, I am so sorry that Lauren has been sick and can't spend time with you.... Be strong for your family. I know it's hard. And my heart aches for all of you, truly aches. I know that Marilyn is going to be at peace and that gives me some relief. It's the people she is going to leave behind that there is tough road ahead. I love you all and think of you 24-7.

    It was wonderful to see Marilyn last weekend. Sorry about the bad pony tail mare :)
    She is still so beautiful to me. I have said it many times before, when I look in her beautiful blue eyes and that smile, I can't help but feel good.

    I just want to take this opportunity to thank the Leer's family in God. You all have been so good to them and have taken such good care of them. I thanked someone last weekend and their response to me was "I wish we could do more" Are you kidding me? You guys are amazing. Not only have you helped them, but you have given so much relief to family who don't live so close and can't come up everyday. It was wonderful to know that they had meals and good company. From the bottom of all our hearts. THANK YOU! God is good and has definately has blessed this family.

    Jeff's favorite (and only) sister,

  8. I do appreciate your transparency! It helps me to "hear" the ache of the soul of a loved one losing a loved one. I don't even begin to try and understand the "why" in situations like feels like trying to understand what the end of the universe might be like. However, your transparent sharing has helped me to embrace a deeper appreciation of what our Heavenly Father was going through as He watched His only begotten Son endure the last of His life in human form. I can only imagine how our Heavenly Father was saying something of the same thing; how He too hates sin and sickness in this fallen world because of what it is doing to all of us...including His beloved Son. Lastly, if it makes any sense or has any consolation, you and Marilyn (YOUR lives) have drawn soooo many people to seek the Lord more intently, as well as to "agape" love one another more meaningfully. Sincerely, your suffering no doubt sucks and I too feel the same about the "why" stuff you all are going through...believe me, I have prayed harder for Mare's healing than I have for anyone in my life. But, I also must say that observing your lives has probably had more impact on my faith for the glory of God than anyone I've known. From the bottom of my heart, please know your suffering (both of you) is of eternal value for more people than you will ever know this side of heaven's curtain. It's surely a loss and of great cost to your soul, but the profound impact you are having on soooo many people is one of the most beautiful works of God I have personally seen....mine being just one of them. Keep a grip on HIS hand and I will be praying for more strength for both of you.

    Rod Koenig