I have created this site to be a support those with ALS and their familes, contributing a portion of my profit to ALS organizations locally and to those with special needs.
I do not have ALS but I have a passion to be a vessel to
help those who do through those I know who have ALS and those who work with those with ALS and their families.

Tuesday, July 3, 2012

Touched Deeply:Stephanie Glidden:Natalie Fognani

I was checking a response to a post on Inspire.com tonight.
Last night I had responded to a couple women who had stated they seldom see blogs on ALS .
I shared the site on facebook and this blog.
The response tonight included many links I will spend a lot of time viewing the blogs and definitely will share them.

I am still just touching the iceberg with Stephanie Glidden's blog: http://walkingthroughthevalley.com/category/living-with-terminal-illness/

I had a little trouble finding the continuation of the story on the front page but dug around in the archives to the above page.
Stephanie trusts God in ways that I can learn from and shows where I leave way too much room for me.

I don't live with ALS in the sense of having it physically or being a caregiver. Rather I live with ALS because it's a passion God has so deeply put in my heart using my dear friend, Dwayne who is a caregiver for ALS patients and just lost his friend, Danny to ALS not so long ago as well as other losses.
The more I learn, my passion grows and at times I feel heavy with grief  I seem to feel it with many experiencing it.

Then there are other times I soar with many of you because you hold out hope in the midst of hopelessness and don't stop hoping.
I fall so short of how your living life in the midst of loss and frustrations.

I am painfully aware as many of you are, that there is this, that and the other for cancer awareness and cure, liver transplants, diabetes awareness and cures. The list goes on and on.

I rejoice that so many are continually stepping up to the plate where no cures seem in site and answers so uncertain for ALS. Yet more lives are wasting away and lost while we go forward.

I will leave you this and hope to spend more time with Stephanie's blog before I can even go on with the next. It's a wealth of hope, and her walk through it all.

I am going to quote Stephanie here and post the video to watch. When you are done, please go explore and read Stephanie's blog, please!

In 2011, a poem written by a Colorado woman named Natalie Fognani  was turned into a song by musician Lucas Hoge. The song is called “How Was I To Know?” When Natalie wrote it, she could no longer walk, talk, or move her arms and hands. Folks, she wrote the song with her toe (a hot pink painted one at that, love it!) Natalie was trapped inside a body that didn’t work any more because of ALS. Her dream was to have her poem made into a song, which thanks to a group of special people, she was able to see her dream come true before she passed away a few months later.
For a woman who was weak and frail, she has a message that is strong and true. It’s a message we can’t afford to miss.
I read an interview that was done with Natalie. This is what she said:
“It occurred to me that most people take it for granted that they can talk and hug and kiss. I had taken all those things for granted. How was I to know I’d be in this condition? I looked forward to retirement, a next vacation. I took my good health for granted, friendships and relationships. I didn’t thank God enough for the blessings in my life”

The Little Big Things

It’s hard not to take the everyday things for granted.  But I hope Natalie’s song will cause you to slow down. To focus on the little things in life today. To appreciate your Monday, and every other day of the week you can hug your kids, kiss your husband or walk to the mailbox. It’s the little things, but they really are the big things after all, aren’t they?
Here is the video that was made for the song.It starts out with how the song was made, and then the musician meets Natalie and performs for her.  I’ll just warn you ahead of time: Get your tissues.

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