A Childlike Faith

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Jill and Eric visited last week and we were talking about faith and I, with a strong conviction, said that I felt I possessed a “childlike faith.” Maybe I was a little too confident or even cocky because exactly one week later I had a meltdown and felt as if I wasn’t faithful at all. I was so confused and hopeless as to why I have to go through this hell.

Maybe I felt that way because those ugly words like feeding tube and motorized wheelchair and breathing machine kept popping up. Maybe it was an emotional week because of a six-hour ALS clinic day or because J.D. from Mary Free Bed spent two hours in our living room explaining different wheelchair options. I felt like Mark and I were shopping for a new car that I hated and that we really couldn’t afford but we were buying it anyway.

Maybe I had a shitty day because I can no longer pick up my phone to call my kids or my sisters or brothers or nieces and nephews or my friends because my hands are no longer coordinated enough to maneuver a phone. Or maybe it’s because my words are getting harder to understand. I’m not sure why, but I lost hope on Friday.

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But Saturday was a brand new day and I was emotionally ready to begin it much happier. My high school friends Jill, Nancy and Kristine visited and I didn’t want  to waste a single moment being in the dark.

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Next time I feel like that I hope I can remember the amazing love and care I am gifted with every day and the beautiful family and friends I have willing and ready to help when I need them.

And I hope I can appreciate a warm, clean, uncluttered home and family and friends who fill it with love.

And finally I hope I can remember to be grateful for my medical team that helps and guides us through this devastating journey and for our medical insurance that allows us to afford the assistive devices we need to make life easier for us.

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Today I am hopeful and my “childlike faith” is back where it belongs.

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9 thoughts on “A Childlike Faith

  1. My dear friend Rosemary, one of the things I have always loved most about you is the inner child you always hung on to in all its most beautiful forms. Now that “child” within serves you … and all who are blessed to know you or to read your blog … extremely well. I love you always.
    Nancy

  2. It was a wonderful reunion amongst friends. You welcome us with grace and dignity. You made us smile, laugh, and cherish our time together. You my dear friend is what “Loving and Living Simply is all about”. Thanks to you and your family for the gift of Love and Friendship that will last forever…………………………. xxoo

  3. Rosemary – I recently learned of your situation through a friend, Terry Nolan. I am reminded by you (and by him and his FB posts) to keep my chin up which at times can be very difficult. I lost my best friend of 20 years to ALS in 2010. I do not have sisters, but she was like a sister to me. I continue to have contact with her children (although not as much as I would like) and I know she appreciates it as she would have done the same for me. I am not quite sure what to say to you…since I didn’t even know what to say sometimes to my friend Stephanie…however I do remember I made her smile. One time I brought my new kitten over for her to see…she loved it. Another time I brought my grandkids over and just watchin them play and say “kid stuff” amused her. I began to focus on not saying the right thing…but just being there. ..I am thinking music would be a lovely thing…or a book on cd …although sometimes those things can be sentimental too! I think you’re blog is a wonderful thing …something that your family can read at any time ..keep up the blog as long as you can and if I can offer one suggestion – make sure your affairs are in order and acknowledge and signed…I came over and wrote down all her wishes and her husband was to carry it out…but unfortunately it did not happen that way and he ended up changing some things..and her children got left out (they were not his children). I am not saying this to make you upset….just want you to be at peace. No one wanted to bring it up because it was an uncomfortable thing to discuss but in hindsight…well you get what I am saying. I will say a prayer for you Rosemary…and your family.

    God Bless You ! Jean

  4. I was reading ‘The Beatitudes’ (Matthew 5) this morning, “God blesses those who are poor & realize their need for him…” and I thought of you, Rosemary. I said a prayer for you & Mark. “God blesses those who are humble…” and “God blesses those whose hearts are pure, they will see God” and, I thought of you again, Rosemary. And, I said another prayer. You are an incredible example of child-like faith! Your honesty & humility through your thoughts & words remind me every day, how important this minute, this hour…this day is!

  5. Sometimes I think it’s not ok for me to vent my bad day feelings and I should keep them to myself. Thank you for showing me that I can and that everyday is a new day! You are a wonderful role model! <3

  6. You are a truly amazing woman. Oh, how I wish this wasn’t happening to you but you certainly do handle it with grace and humor. I’m sure there will be shitty days when you do have melt downs but for the most part you will bounce right back. I think of you often and you are always in my prayers Rosemary.

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