Saturday, September 26, 2009

Friday September 25th

I thought it would be very emotional. It wasnt. I stood there with Lauren and we watched our man, Bubba, in the homecoming parade announced as king. Mare wasnt there. She was home in bed watched by carmen and lisa. Maureen Stanton asked me the other day if i had read ann landers about caregivers and grieving. I had and could relate. Lauren had expressed similar sentiments to what a widow of ALS told me about her husband. The day they got the diagnosis was the day she started grieving for the loss of her husband. Mare is still here but she is not here. When i look at pictures of even a year ago, that person seems to no longer exist. I miss her. Yet she is still here. Twilight zone......

For those of you that have signed up for anything to help us you know Carmen. She has been our point person since the beginning. On top of that she is always there to lend a hand. She quietly does what she does with no desire to be recognized. She is the best example of being a servant that i can point to. If you talked to her you would not hear from her all she has done for us. She does it and expects nothing in return. It is enough just to do for others. She came over today just to give me a break. Her husband John is a lucky man. He married up. Here she sits quietly watching over her friend.

marilyn had a tearful day. She really wanted to be there tonight. She told me she wanted to be the homecoming kings mom. I told her she is. She is being more accepting of increasing doses of meds. Her humor still triumphs her situation. Today lisa and rich (our neighbors) were there along with carmen when i came home from the game. Mare wanted some meds so as i prepared it she whispered to me, "i want to play a joke on Rich." Rich is a great guy but a little squeamish about things like this and would never even consider giving mare her meds in her pic line. Mare asked him to give her the meds and he said no way. But after giving him her version of the puppy dog look, he relented. As he did it it was obvious he was way out of his comfort zone and wanted to be somewhere else. If you look at her eyes here you can see she is about to spring something on him. All of a sudden mare starts in with some ow, ow ouch that hurts and freaks Rich out. She wanted to continue the prank but under some pretty heavy medication already, she is unable to hold it together and started laughing. We all did except rich who grabbed the rum that was left over from uncle Pauls visit and started chugging. I think he wet himself.

We had a great day just being together. We watched two movies and held hands. She is sleeping now and breathing irregular. I hope she does not feel afraid.

i love this pic. Rich and Lisas daughter sidney fed Marilyn her Popsicle tonight. I wonder what she thinks of all this. How it will impact her when mare is gone??

May mare have a restful and peaceful sleep.


  1. Thanks for sharing your special evening, Jeff. What a gift Marilyn is providing when she gives you all a laugh. This will live on in the lives of all of you, for you will encounter those things that you know would make her laugh. Then, you'll hear it -- her laugh, recorded for all time in your wonderous brains. At first these memories will make you cry, but, in time, they'll make you smile.

    May you all have a restful and peaceful sleep.


  2. I am praying that Marilyn's fears will subside and that she is at total peace. I believe that when she enters into the fullness of life in adoration of the Beatific Vision, she will miss nothing. Every trace of love and goodness we experience in our earthly journey is just a foretaste God Himself.

    When Marilyn is in complete, intimate union with the eternal Source of all Good, every good experience, emotion, and event that she misses in the flesh will be experienced deeply, joyfully, and profoundly as it emanates from the heart of God to which she is breathtakingly united. "I am convinced that neither death, nor life, nor angels, nor principalities, nor present things, nor future things, nor height, nor depth, nor any other creature will be able to separate us from the love of God in Christ Jesus our Lord."

    But, body and soul belong together and desire to share joy with each other. Marilyn's desires to experience all God's goodness overflowing into the fellowship of her body will be accomplished in the restoration of her body in the resurrection! She will miss nothing!

    Love, Cindy

  3. I so absolutely love how you guys are LIVING despite the horrific disease. You teach me so much about life and point me toward Jesus every day.

    Not to mention the fact that Marilyn's sense of humor has always made me smile.

    love you guys,

  4. I want to add to what you said about Carmen, that I have also very much appreciated her and all that she has done. Even though she didn't even know me before all this started a year ago, I would sometimes email her in the last months to find out an update, before the blog was started, and she would graciously take the time to send me back detailed emails on how everything was going. That was such a huge help. And just knowing how much she has helped you all along has been comforting, from someone who is a farther distance away than I would like to be and can't help as much as I wish I could. So if you read this, Carmen, thanks again so very much for all you do!!

    Kim K.

  5. I love your blog, Jeff. And I totally agree with you about Carmen. What an angel. She puts out needs on meals and overnighters and people are jumping at the chance to help. I have fellow nurses ask me everyday about how they can help. Tell Mare that Cynthia Much and Dawn Leegwater want to make a visit. They haven't seen her since she was in the hospital. They can't do an overnighter, because they have small kids, but I bet they would LOVE to break you for tennis, a bike ride or whatever. I hope you call them back when they call you so they can come when it's good for you guys.You really need to take care of yourself and get out and enjoy yourself. It gives you energy to take care of Mare.You are doing a great job, and we want to help in whatever way possible, but I have been telling people to call first. They don't want to interrupt doctor or Hospice or RT visits.
    We love you so much and I have you and Mare and the kids on my mind all the time. I pray she sleeps well tonight. Did they start the Methadone? I bet that will really help.
    You are so right about Mare's sense of humor. She calls her black foam on the top of her mask her unibrow and she calls her hose from her mask her elephant nose. I miss my old times with her. I wish I had spent more time with her, but with family, health issues, it becomes easy to say "sometime soon we'll get together". My mom died on Halloween in 1994, and I remember on the first year anniversary, I couldn't bear to even answer the door for trick or treaters. I called Mare and cried. I said I needed company. She dropped everything and we went to see Meet the Fockers and had the best laugh. I remember all the Christian concerts we went to....saw Rich Mullins, Amy Grant, 4Him, Jackie Velasquez, Greg Long, Margaret Becker, Wes King, Delirious, Kathy Troccoli, Michelle Toombs. We always sang along and her voice was like an angel in my ears. She also volunteered at the hospital during the Christmas Holidays to play the piano in the cafeteria. What a beautiful player. The angels in Heaven are going to be rejoicing along with her Gift. I know you miss it. Thank God Lauren has that same Gift.
    Give Mare my love and have an awesome quiet time together on your anniversary. Pat and I will be there by 9, but if you want us to come earlier, just say the word. We will be ready.
    Love, and prayers your way!