Resources
for Navigators

Research is what I'm doing when I don't know what I'm doing.
Werner von Braun

On this page:

Sharing Your Journey: The heart of STOP
Writing Your Story
Organizing the Data & the Details
Ideas to Consider when Doing Research

Research Links
• Foodborne Illness
• Tests & Test Results
• Running the Marathon
• Hemolytic Uremic Syndrome (HUS)
• HUS Therapies
• Medical Consequences
• Long-Term Consequences

Regaining Balance
• Returning to School
• Emotional/Behavioral Therapies
• After Medical Trauma

The Hearts & Voices of our Constituent Community

Sharing Your Journey:

Going Deeper ... ... is like scouring a deep, dark closet for the thing we are certain is there, we just have to locate it.

In the midst of all that digging we find more answers (and questions), assurance that grounds (not grinds) us, and the encouragement (we didn't fully realize) we needed.

It can be exhausting. But before we know it we've traveled a great distance and covered a lot of ground.

You Are
by Milton (2012)

Child of
Esses you are.
Softness of sand, warmth of the sun,

Turbulence of the tossing seas.
You are.

Sixty-five years of life together
Times of sun and stormy weather

Young souls come with newborn joy
Loved ones leave as time goes by
23,700 days of work and laughter
The destination a quiet hereafter
For the partner left it is disaster!

Watch Over Me by Chris (2016)

The Making of an Angel by Nikki's Aunt Linda

How do angels come to be?
First of all, God must create one.
He chooses very special people on this earth to
have them because he knows the loss they will
feel when they lose that person who is become that angel.

God has His plan and knows what must be
done and will help you through it.
To become an angel they must first come to "be" here on earth.

Nikki was such a creation.
From the moment of her birth,
we were all mesmerized by her.
She brought so very much happiness to her
parents and family. Her sweetness was unbelievable.
She was different. She was so soft and soothing as a baby,
her smile so beautiful and her laugh contagious.
The fun she brought to life!

She always looked on at all of us. She was seldom the "ham".

She sometimes had that somber look we all see in the pictures,
it was almost like she knew.
She stayed so very close to her mother,
for it was to be a short time.

She only knew happiness in her life and that was also God's plan.

She is a wonderful angel because she only
knows the goodness of the world - that's
the kind of angel God needed and created.
It's all part of His plan.

For if there had never been Nikki here - there
wouldn't be one in Heaven to spend eternity with.
Her parents were lucky to be the ones to have her.

There is a special place in Heaven that will more than make
up for the pain of losing her so soon here.

Then it was time - and God had a hard time,
as did those who loved her. He had to gently pull her away,
and everyone pulled back so hard!

It went back and forth but finally He had the last tug
and an angel she became.

Now down here alone - you must think,
"What if there had never been Nikki?"

What a loss that would be -but she was and always will be.

The day will come to reunite with her, but on God's timetable.
She was much too special to ever have to suffer the hardships
of this world and now never will.

Her whole short life was filled with joy and so much love.
Cherish all the wonderful memories and be proud that
God chose you to help in the creation of Nikki ...

She'll be with you until the day you die, and after that - FOREVER!

A Mother No More
by Nancy (1999)

Most of the time I really don’t feel anything at all.

Numbness doesn’t describe it. It’s more a feeling of lifelessness. But every once in awhile, the incredible horror seeps into my brain.

And all my feelings come crashing to the surface, engulfing me in wave after wave of grief.

And pain. And breathtaking sadness.

My thoughts of you are so tortured that I beg to return to lifelessness.

For you see, when you died my son, I died too. Only my mind and my body don’t know it.

I Surrender by Jeannine (2002)

I surrender to
the Turmoil and Anguish
the Ceaseless Chatter turning
Circles in my head

I surrender to
the Unexpected, Long and Brutal Fall
the Physical Pain calls my Name as I Stagger, Struggling to Stand
in this Moment, I concentrate on my
Breathlessness
as I was left Gasping for Sweet Air

I surrender to
The Iron suit,
the Red cape, the painted Mask
For my tears can no longer be stifled,
as I
destroy the Costume of Bravery
The Wounds that somehow remain Open from
yesterday’s Past

I surrender to
The Frustration that Burns and Blinds my Sight
the Darkness whereupon my Eyes had once reflected Light
in this Moment I realize because
I Stand too closely
I cannot See

I surrender to
The Fear that Follows my every Move
The Expectation that Looms high,
too High, above my Head
the Approval which Lies
just out of Reach’s Way

I surrender to
Plans set by some
sort of Fancy Imagination as Mirages
they appear only to Crumble
as I draw Closer

I surrender to
the Invisible yet Crushing Force
on my shoulders I bid Fare-well to the Weightlessness my Feet once Felt,
like Walking on Air
And I make Space for the Fatigue
that has made a permanent Home within my Body and my Blood

I surrender to
The aching Longing for that which I do Not have
to the medals, the trophies, the certificates,
articles, diplomas – Illusions of what I have done
Fotos of “the way I used to be”

I surrender to
The Mind-Altering Poison of my Senses
and my Emotions The Luster of Gold,
the Smell of Wine, the Taste of Honey,
the Shape of the pill
Do they offer Salvation?

I surrender to
Ambiguity – Giving it Power is Fruitless
Impatience – My longest Marathon yet
this Race having no Winner

I surrender to
the Crowds of People
Chaotically attempting to Pull me “Their Way”
Creating lines of Judgement
and Silently Destroying the very Unity
of which I Seek

I surrender to
Confusion, Blame, Jealousy, the Hurt, the
Search

I DO NOT surrender
through Weakness nor Giving up
I need no Weapon, I need no Book
I do not need to take
Action
the Fear Finally Fades

I surrender through GRACE
Grace found in the One and Only
True God the Omnipresent Divinity in
All that my eyes can See
as well as what they Cannot

I Align my Self with the Golden Thread who
connects us All
having No Beginning and No End
I am part of this
it is Now I begin to Live to Just Be

I surrender gaining Freedom
With Patience, Peace, and Purity
the Truest Expression of God’s Love
in Utmost Bliss
God Eternally Lives within
Me and I within Him

Resources for Navigators

Writing Your Story

Personal stories are more powerful when they tell the facts and show emotion.

Facts are important, but people tend to be more interested in what happened and your response to it than they are with dates or places.

Help for writing your foodborne illness story

Getting all your data in one place

Some ideas to consider when doing research

When searching, if you don’t find anything on the first page (of the search engine) it is very likely that pages 2, 3, 4 will be similar versions of the same articles found on page one. Start on page 5 and continue from there. You might find something that is peripherally related or you might hit the jackpot.
For PubMed articles (and other sites like it) scroll down through the entire page. It is usually indicated which other articles have cited this work, so even though the article you’ve opened doesn’t fully apply to what you're seeking, there might be a link to an article that does.
If you find an article that is a direct hit for what you seek, you’ll notice that all the names of the authors are highlighted in blue – meaning, they are links to other articles by those authors. There's a very real possibility that those authors have written other papers/articles/studies on the same or similar subject matter.
When reading news articles, be sure to check the end because there are often links to related articles there.
Another thing about news articles ... read people's comments. Sometimes information that relates directly to what you are seeking is contained in a comment. When possible, make note of the commenter's name or other identifiable information that might be handy to have later.
Be mindful of the date a news article was published. Some aspects of the article may not be up-to-date, or there might be more to the story than what this one article covers.