Tuesday, September 15, 2009

Monday September 14th

Above, Grandpa and Kay doing their daily watch over his little girl.

Left, some weirdo who came in off the street and wanted a picture taken with mare???
Below, my two night angels that gave me rest!
Mare did not even suggest getting out of bed today. I think that took a lot out of her to get out yesterday and to make the trip outside. Her respiratory therapist wanted us to try a full face mask in order to solve the never ending mask problems. We tried it and mare hated it. She felt clastrophobic and we went back to the current one. That is always so stressful for her.
Mare wanted to browse facebook so i put the laptop on her lap and moved her hand in place to use the mouse. She quickly realized she was unable to control her right hand to navigate the page. ALS has finally taken all of mares limbs and even the little tiny pleasures of life she could enjoy. She became very frustrated and then started to cry. I had to wipe the tears from her eyes. How cruel this disease is. It leaves your intact mind to be trapped inside a lifeless body.
There is hope for the future though. Mare and I were alerted to new breakthroughs in familial ALS that could be a possible cure. We shared that with Brian. I could not wait to tell him. I cant wait to tell Lauren. Along with dealing with great sadness of Mare, lingering in the background, laying just as heavy on all our hearts is the fact it could strike again. I could not do this again. I dont know how Gpa is doing it. If this news is true, it is a huge lifting of that weight. Mare told brian is was too late for her but for those in the future who might get this, they have hope. I cant find the link right now but will post tomorrow. It is somewhere on Mares facebook.
Our social worker will visit today. I also have night angels again!!
Last night i dreamt of mare and me before ALS :(
May Mare have a restful and peaceful sleep.


  1. I found the link. Oh please God......dont let this be some cruel joke.


  2. My Beautiful Mare!!! We are home from vacation and I came home to a dead car. Chris had been using it and he called a couple days ago and said the electric and alarm system was acting up. He had to have it towed to our home. Blah!!! Mike will try and figure out what is going on in the morning. The last thing I need is a huge repair bill right now.
    I want to come see you tomorrow afternoon. I have missed you so much. I will call first. I was able to follow the blogs on my Blackberry but I couldn't post any comments. The pictures are so awesome....your family with you and all your angels....God's Gifts to this earth, but none more than you, My Friend.
    Jeff, this blog is awesome. I don't know how the progress is on the monthy updates getting sent to you, but I will send you what I have, ok? I highly doubt I deleted any.
    Give Gpa and Kay a huge hug and kiss from me. I love you all so much. I can't wait to be able to be an overnighter to take care of Mare. It's such an honor for all of us. I am going to try and sneak in a night before the 24th, because it's been so long since I have seen you all.
    Much love to you all and God Bless Mare with this fight. I am so proud of her.
    In the Nursery she never left for home til the job was done (she got out of there pretty late sometimes :-), and by God, she isn't going Home til she's done here either...God has more to show us. It certainly has changed my life....and some of my non-believer friends....oh, how I pray for the day when those friends choose Jesus!!! One time a non-believer friend asked me how I was staying so strong after our friend, Lorri, drowned. (I shared this with Mare) I said," I have Jesus in my life." She said, "that's just a crutch. I want the strength to come from inside me." I said, "yes, He is my crutch...I lean on him for everything. He is the one who makes me strong when I have to mourn." (Philippians 4:13) I can remember that moment like it was yesterday. And that friend died of cancer, and I truely pray I will see her in Heaven.
    I remember Mare and I were working together one day. It was during the remodel of our unit several years ago. The nursery was scrunched up into this little room while they worked on the new nursery. I was working L&D and it was slow, and it was at times like that when we would share our joy in how God was working in our lives. I was a new and growing Christian and she said to me, "All I ever wanted to do in this life was be a Light for Christ." (Ephesians 4:8-9) I can remember that day like it was yesterday. That Light is shining so bright right now. It's time people really pay attention.
    I look forward to seeing you all soon. My prayers are unending. Thank you for the research link, Jeff. I got so excited reading what you had to say. I will look into that article later tonight. The house is quiet and I have some time alone by myself before bed. Mike is sleeping doing his dialysis and Amy is in bed. Lisa is out with friends.
    May you all rest and sleep well tonight, knowing that God is watching over you. (Matthew 11:28-30)
    Cori †

  3. Praise God for this hope. I'm ready to ride again next year.

  4. it would be an honor to ride with you Dale!