Caring 4 Krabbe Kids
A Resource for Families Dealing With Krabbe Disease

Information Resources

Information Resources

Before giving you these resources, I need to give you a useful piece of advice that I received from my sister:  “Get off the internet and get out your Bible.  If you can only find one sentence to comfort you, keep repeating it until you BELIEVE it”.  But that being said, here are some resources that might save you some time: 

Websites For More Information

A)    Krabbe Disease:

1)     Hunter’s Hope at www.HuntersHope.org.  Specifically, research publications on the Hunter’s Hope site at http://www.huntershope.org/site/PageServer?pagename=hjkri_researchpublications

2)    National Institute of Neurological Disorders and Stroke: http://www.ninds.nih.gov/disorders/krabbe/krabbe.htm

3)    Mayo Clinic at http://www.mayoclinic.com/health/krabbe-disease/DS00937

4)    Parent Education Videos by Dr. Maria Escolar on infantile onset Krabbe:  http://nfrd.unc.edu/krabbe-pep.cfm

5)    A description of Krabbe disease in layman’s terms:  http://healinganaya.blogspot.com/2011/12/krabbe-disease-krabbe-leukodystrophy.html

6)    Website article discussing the various forms (clinical subtypes) of Krabbe disease:
http://emedicine.medscape.com/article/951722-overview

7)    Save Babies Through Screening Foundation – UK.  A Foundation in the United Kingdom working to save and improve the lives of babies through early detection and treatment:
http://www.savebabiesuk.org/



B)    Families with Sick Children:

1)    Our son Dylan:  http://www.caringbridge.org/visit/dylanmay

2)    Jackson White at http://www.Jacksonwhite.com

3)    Peace Love & Trevor Foundation:  http://www.Peaceloveandtrevor.com

4)    Joshua Cross:  http://www.krabbes.com/joshua_cross/index.htm

5)    Anaya:  http://healinganaya.blogspot.com/

C)    Website dealing with Grief and Healing:

http://lensingfuneral.myfuneralwebsite.com/?action=2&value=1131&menuitem=1733

Book Recommendations

A)    Christian / Inspirational – None to be surpassed by THE HOLY BIBLE written by GOD, with a little help from some individuals

1)    May your unfailing love be my COMFORT, according to your promise to your servant. (Psalm 119:76)

2)    He himself bore our sins in his body on the tree, so that we might die to sins and live for righteousness; by His wounds you have been healed. (1 Peter 2:24)

3)    "Thou He slay me, yet will I trust Him", spoken by Job, in the book of Job.

4)    “Then they cried to the Lord in their trouble,
and he saved them from their distress.
He brought them out of darkness and the deepest gloom
and broke away their chains.” (Psalm 107:13-14).
That was a verse to cling to, but then reading on, it got even better:
“Then they cried to the Lord in all their trouble,
and he saved them from their distress.
He sent forth his word and healed them;
he rescued them from the grave.” (Psalm 107:19-20)
So we are clinging to God's word for survival.

B)    Special Needs

1)    Extraordinary Kids: Nurturing and Championing Your Child With Special Needs by Cheryl Fuller
 
“Provides parents with vital information to help celebrate, nurture, and prayerfully champion their special-needs children.”

C)    Grief

1)    Why?  By Anne Graham Lotz
Drawing her characteristically keen insights from the familiar story of Lazarus in the ninth and eleventh chapters of the Gospel of John, Anne offers Jesus' reassuring answers to our heartfelt cries for understanding:
Why doesn't God care? Why does He let these things happen? Why me? Why doesn't God answer my prayers? Why didn't He protect me? Why doesn't He perform a miracle?  
Why? helps us understand and deal with suffering while guiding us to the ultimate answer-the Savior who shares our grief and our tears.

2)    When God Doesn’t Make Sense:  by James Dobson
Every person who lives long enough will eventually encounter circumstances that are difficult to explain theologically. From years of counseling experience, Dr. James Dobson offers assurance of God's constant care, even when human suffering is beyond our comprehension.

3)    Have Heart: Bridging the Gulf Between Heaven and Earth by Steve & Sarah Berger
“Are you grieving after the passing of a loved one?  Have you discovered the source of healing for your broken heart?  Do you wonder what you loved one is doing in Heaven?  Are you living on earth with Heaven in mind?  Since their son Josiah went to Heaven on his 19th birthday, Steve and Sarah Berger have developed a new, contagious passion and excitement for Heaven, its inhabitants and its activity”

4)    Prayers of Hope for the Brokenhearted by Jill Kelly
“Sometimes the deepest hurts are the most difficult to express.  Times of heartbreak and sorry can also be times of great loneliness, when it seems you bear unbearable burdens by yourself.  As you let these prayers become your own, you can trust that God is very present.”

5)    A Broken Heart Still Beats: After Your Child Dies by Anne McCracken and Mary Semel
(We have not read this one, but it sounds good.  It does not appear to be written from a strictly Christian perspective). 

How Two Grieving Mothers Found Inspiration and Comfort
There are few, if any, events in life as traumatic, heart-wrenching, and crushing as the death of a child. While nothing can mute the pain of such a life-shattering loss, others who know this experience can help those suffering articulate the chaos of their feelings and see that they can, eventually, feel whole again.
Organized by a journalist and a psychotherapist, each of whom has lost a child, A Broken Heart Still Beats is a remarkable compilation of poetry, fiction, and essays about the pain, stages of grief, and the coping and healing process that follows the death of one's child. The chapters are organized thematically and chronologically, from "Thunderstruck," the point at which parents first learn they have lost a child, to "The Legacy of Loss," wherein the authors and the anthology selections speak to the "steely hard and cold" life lessons this type of bereavement brings.
This compilation of poems and excerpts draws from short stories, novels, biographies, and autobiographies that focus on the death of a child as relayed through classic and contemporary world literature. It is made up of works by some of the best writers and thinkers present and past, many of them bereaved parents as well, ranging from Mark Twain, Isabel Allende, William Shakespeare, John Edgar Wideman, Fyodor Dostoevsky, Anne Morrow Lindbergh, Anne Tyler, and Sophocles to Eric Clapton and Winston Churchill. Biographical introductions personalize the excerpts, often offering new insights into well-known writers like William Faulkner and Rudyard Kipling. This book's anthologized selections make it truly exceptional.

1)     Prayers For Those Who Grieve  by Jill Kelly
“In your darkest hour, when the pain seems almost too much to bear, God is there for you. He sees your grief. He hears your cry.  He sends others to keep you company along the way.   Jill Kelly’s only son died when he was eight years old.  She offers prayers laced with honest questions and the profound hope found in Scripture.  Let these prayers ease your heart and be companions for your own grief journey.”

B)    Biographical

1)    Without a Word: How a Boy’s Unspoken Love Changed Everything by Jill Kelly

2)    Eyes That See:  Judson’s Story of Hope in Suffering by Christina Adelseck Levasheff  see more information at http://judsonslegacy.com/Eyes-that-See

3)    Holding Onto Hope:  A Pathway Through Suffering To The Heart of God by Nancy Guthrie 
Nancy actually lost 2 babies at 6 months old, to a terminal genetic disease. We feel like much of the book was written about our feelings. She dedicated the book to her son "for giving me such a good reason to keep getting up in the morning" and to her husband "Thank you for letting me make our pain so public. She was beautiful, wasn't she?". The book is about Job and his amazing response to pain. We highly recommend the book, if you are going through a horribly painful experience, or trying to help someone who is. This quote is how we feel:
"Those who shed their tears with me show me we are not alone. It often feels like we are carrying this enormous load of sorrow, and when others shed their tears with me, it is as if they are taking a bucketful of sadness and carrying it for me. It is, perhaps, the most meaningful thing anyone can do for me."
Many of you have cried for us and with us, and we thank you for making us feel less alone in that way. Also, thank you for laughing with us when we are able to laugh. It doesn't happen often enough.

4)    Tuesdays With Morrie:  by Mitch Albom
This book is good because it is about a man (Morrie) who dies of ALS (Lou Gehrig’s disease), which has a similar progression to Krabbe.  I was interested to see what an adult would say about what was happening to his body (regression and deterioration).  Unfortunately, Morrie did not have a relationship with God, so there is a huge element missing for him. 

C)    Marriage

1)    Married with Special-Needs Children:  A Couples' Guide to Keeping Connected by Laura E Marshak PhD and Fran P Prezant, M.Ed, CCC-SLP.  Here is the description of the book, which can be found on Amazon.com:
At last, a guide that speaks to parents about how to work on marital issues while juggling the demands of raising a child with a developmental disability, serious medical condition, or mental illness. In writing this practical, empathetic guide, the authors draw on their combined professional experience in marital counseling and parent training, as well as on the experience and advice of hundreds of parents of children with special needs.
Married with Special-Needs Children looks at the ways in which having a child with special needs can make it more difficult for a marriage to thrive and how a child's intensive needs can change the structure of a marriage. The authors examine many of the underlying stresses and common pitfalls --a couple's differing coping mechanisms and expectations of a child, communication breakdowns and difficulties resolving conflicts, for example. They then present a wide range of strategies for handling or preventing these problems. Marshak and Prezant also describe what makes a marriage strong, such as continuing to share connections outside of parenting roles, keeping a sense of autonomy, and sharing childcare responsibilities. Parents get advice about the importance of romance and intimacy and the benefits of finding time for each other even when they feel too tired or overwhelmed. In addition, the book deals with serious marital troubles and divorce considerations. Throughout are quotes from husbands and wives, offering special insight into what was especially difficult for them, what solutions they've discovered, and what they wished they'd done differently.
For parents looking for ways to strengthen their marriage, prevent future strife, or resolve or move on from significant relationship difficulties, this guide offers guidance and expertise for taking the next step. Married with Special-Needs Children is also invaluable to mental health professionals, giving them a realistic view of what many of their clients are dealing with on a day-to-day basis.

D)   For Children / Siblings

1)    Someday Heaven: by Larry Libby
This is an excellent Christian view of death and heaven for children. Adults can even learn a thing or two.  

2)    Someone I Love Died:  by Christine Harder Tanguald
An excellent Christian view of death and heaven for children

3)    Lifetimes: The Beautiful Way To Explain Death to Children  by Bryan Mellonie and Robert Ingpen
A view of life and death from a nature point of view.  This book is not at all gear toward Christianity or heaven. 

4)    Where Do the Balloons Go?

5)    When Dinosaurs Die: A Guide to Understanding Death  by Laurie Krasny Brown and Marc Brown

6)    “Why Do People Die?: Helping Your Child Understand – with Love and Illustrations  by Cynthia MacGregor 
This book is very much about helping the child understand his or her feelings.

Poems / Songs / Inspiring Writings

A)    Song For Dylan – written by Debra Soule
This road I travel on
I did not choose for my own
This valley, deep and wide
I will only cross through by your side

This child so loved, so deep
Will you forever keep
Please hold him in your care
And show him the ways you are there
Please show him the ways you are there

Lord I praise you for this little one
And I praise you for the things you've done
And I see your love through his sweet sweet smile
And I thank you for this little while
And I thank you for this little while

I may not understand
But I trust it's in your hands
As I kneel before your throne
I know I don't face this alone
I know I don't face this alone

Lord I praise you for this little one
And I praise you for the things you've done
And I see your love through his sweet sweet smile
And I thank you for this little while
And I thank you for this little while

Lord, you've felt this pain I feel
This sorrow was your own
Your Son died to bring mine hope
Even when you call him home

Lord I praise you for this little one
And I praise you for the things you've done
And I see your love through his sweet sweet smile
And I thank you for this little while
And I thank you for this little while

B)    The Voice of Truth – Song by Casting Crowns:
Oh what I would do to have
The kind of strength its takes to stand before a giant
With just a sling and a stone
Surrounded by the sound of a thousand warriors
Shaking in their armor
Wishing they'd have had the strength to stand

But the giant's calling out my name and he laughs at me
Reminding me of all the times I've tried before and failed
The giant keeps on telling me
Time and time again, "Boy you'll never win!"
"You'll never win!"

BUT THE VOICE OF TRUTH TELLS ME A DIFFERENT STORY
THE VOICE OF TRUTH SAYS "DO NOT BE AFRAID!"
AND THE VOICE OF TRUTH SAYS "THIS IS FOR MY GLORY"
OUT OF ALL THE VOICES CALLING OUT TO ME
I WILL CHOOSE TO LISTEN AND BELIEVE THE VOICE OF TRUTH.

C)    Have you read the book, “The Shack”?  In it, a man has experienced his daughter’s violent death.  He talks about wearing a “Cloak of Sadness”.  That’s what we have.  It’s not that we can’t function, but it’s always there like a coat you can’t take off.  We are to be able to push the sleeves of that coat up a little bit and have a fun evening, a good morning, a belly laugh.  But the coat doesn’t come off.  Our family is complete right now and we want it to stay that way.  We’re not looking into the future for a time when we know we will feel better, because it’s too far away.  As the saying goes, “You never know what someone is going through.  So be nicer than necessary”.  Because they may have on a Cloak of Sadness too. 

D)   Here is a sweet poem: 

THE DASH  – a poem by Linda Ellis

I read of a man who stood to speak
At the funeral of a friend
He referred to the dates on her tombstone

From the beginning to the end

He noted that first came the date of her birth
 And spoke the following date with tears,
But he said what mattered most of all

 Was the dash between those years

For that dash represents all the time
That she spent alive on earth.
And now only those who loved her
Know what that little line is worth.

For it matters not how much we own;
The cars, the house, the cash,
What matters is how we live and love
And how we spend our dash.

So think about this long and hard.
Are there things you’d like to change?
For you never know how much time is left,
That can still be rearranged.

If we could just slow down enough
To consider what’s true and real
And always try to understand
The way other people feel.

And be less quick to anger,
And show appreciation more
And love the people in our lives
Like we’ve never loved before.

If we treat each other with respect,
And more often wear a smile
Remembering that this special dash
Might only last a little while.

So, when your eulogy is being read
With your life’s actions to rehash
Would you be proud of the things they say
About how you spent your dash?

©1996 Linda Ellis


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