It should be so easy to live my life …

No responsibilities, no work hours, no demands – or at least demands as you might see them.

But it is. That horse I cannot make drink, is this abysmal child in my head.

“What would you miss or fear most?” I was asked. I thought it meant losing the ability to speak. I had no idea of how FTD would affect my body: no stability to walk; swallowing, walking, dancing, climb into bed without ending in stuck in a pile of bedding, nearly choking. Speaking of choking – the night cough that can rattle me awake, unsure where I am, looking for a tidy place to expectorate. And the next day, there is no sign of it. But it takes 2 days to get energy to get out of bed.

The child within keeps me from the computer, to speaking on the phone, to get into the tub, to brush my teeth … Same child will prevent me from recognizing that I need to urinate, until, while sobbing, I do, in my now revered Depends.

Shame, frustration have kept me from you. Those ‘sticky’ dreams I’ve had for several years rob my dreams. I hear them calling me, time to move, to pack — and then I cannot find them, not awake nor asleep. My FTD friends, I so wish we has someone to cuddle up with us as say, as they brush my forehead, run their fingers through my hair, to say “It will be all aright.” “We are getting you ready for a place of peace.”

My prayer tonight is for those who only want to die in the arms of those they love. And it will be forever.

Papa, do you hear us?? We are lonely and very afraid. Love, Vicki

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    • Mo McNamara on November 11, 2011 at 8:43 pm
    • Reply

    I think about you and pray for you all the time, little cuz, albeit distant. Just remember how much you’re loved. You have and are contributing so much to so many people with “Vicki’s Voice”. What an inspiration you are!! Love you, Mo McNamara

    1. The closer it gets to the holidays, Cuz, the more I feel my Mom running around town for everyone, even more so than she did the other 340 days a year. I crave all the goofy 1950 hor d’ouvre (?), rumaki (remember making them in the rectory kitchen during Holy Hours and Confirmation? Ham roll-ups with either cream cheese either wrapped around pretzel sticks, or cocktail pickles. And the piece de resistance (why do I keep using words i can’t spell any more, eh?) Ritz crackers with baloney or sausage and cheddar cheese. then the many years of cheese balls. Her orange cranberry bread. Now they are all my cravings… up to a point. Can’t do ‘warm milk & buttered toast !!

      I miss her so much, as so many do. I heard from David Hanson that his mom is 91 and still kicking. If you see her please give her my love.

      Say a prayer for Andi & Gregg, things aren’t going to well. How are you and Larry? And all th kids and grands? Doesn’t seem possible.

      Much love and thanks … it gets so lonely here.

    • Jim Coyle on November 11, 2011 at 10:09 pm
    • Reply

    I’m glad that child inside you was quiet enough to let you share about what you’re thinking and experiencing these days and nights. There are many people caring about you and praying for you, and being helped by what you’ve shared about your life with FTD. I wish you had the cuddling you need. Here’s a virtual hug though: {{{Vicki}}}

    Jim Coyle

    • colette on November 12, 2011 at 6:48 pm
    • Reply

    I pray for you daily. i wish you a million hugs and comforting feelings of love and peace and God.

    1. Colette I keep trying to reply but it isn’t showing up that I can see. So if I repeat myself, well who could tell, eh? Just for you I made this prayer. Hope you enjoy.

      “Now I lay me down to sleep,
      cannot tell my head from my feet.
      I tried to pray but lost the way,
      but ate a sandwich anyway.
      Oh yes…
      If I should die before I wake,
      I hope that a shower I did take.
      Hate to offend both in body & soul,
      but that may the way I fly thru that ‘hole’.
      Who cares if I’m sane, goregous or rich
      when the point is to rise up
      no longer a bitch.
      And if I should die before I wake,
      well Papa there’s a deal we should make.
      Take my brain, I give you my soul.
      Take my heart and you’ve made me whole.


      I love you, Collette. Always my laughing FTD friend.

    • Cheryl Goldsworthy on November 13, 2011 at 9:32 pm
    • Reply

    Ms. Vicki,
    Thank you for sharing what you are feeling and going through. You are in my thoughts and prayers.

    • freda on November 15, 2011 at 11:32 am
    • Reply

    That holiday food Vicki just reminds me of the hulahoops (potato crispy snack) stuffed with Philadelphia cream cheese, that we used to make here for my neices when they stayed for the hols!!
    Like Colette, I wish you hugs and comforting feelings of love and peace and God.
    In the airwaves between us, I sing you quiet lullabies, hold your hand and stroke your forehead, sending you sweet dreams.

    1. Love you my Freda. I water your crops, send you CityVille and Castleville gifts. I hope you know they are my way of saying “thank you” and that I love you, too.

      The peace you have outlined to give me, puts me at rest. You have a beautiful voice, my Freda, and the lullabyes swirl in my brain as I close my eyses for the night.

      Love & blessings, Vicki

    • Fran on November 19, 2011 at 5:18 pm
    • Reply

    You should never feel ashamed of what your body is going through. Every one of us comes into the world needing diapers and needs them again as we leave it! You are in my daily payers. Please let me know if you are ever open to a visit from me. I would be happy to help anyway I can!
    I hope your Thanksgiving is filled with love from your family and loads of mashed potatoes!

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