Christians with DMD/BMD

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Christians with DMD/BMD

Members: 116
Latest Activity: Feb 3, 2016

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A beautiful book for our boys

Started by Veronica E.. Last reply by Leigh Alisen Pernosky May 19, 2011. 5 Replies

Can DMD be your Idol?

Started by Lori Ware. Last reply by Alejandra Lagffer Jul 31, 2010. 7 Replies

Angry at God....

Started by Char Burke. Last reply by Linda Jul 29, 2009. 9 Replies

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Comment by Kelvinsmom - Michelle on November 4, 2008 at 8:29pm
I'm just sitting here, watching the election coverage and all and praying for all of us, with hopes that the election turn out is such, that our sons will be provided for always with the best health care and that they will always have the best opportunities with special needs. I'm just trying to remain strong, that this is all is God's hands and we have to keep the faith, always and forever. Michelle
Comment by Veronica E. on October 13, 2008 at 5:33pm
That was beautiful, Mary. Thank you for that. I loved looking at photos of your son. It looks like he was very loved and happy!
Comment by Mary Sahagun on October 13, 2008 at 5:24pm
My son's 18th birthday is this sat and I'm missing him more then ever. I wonder what a birthday is like in heaven? Can you even imagine? Our lives in heaven will no longer be consumed by the cares of this life, but we will be filled with joy being in the presence of our heavenly Father. When we take our last breath on earth, we will take our first breath in heaven. It's difficult for us to grasp the absolute perfection and glory of heaven. What truly makes heaven spectacular is that we will live forever in God's presence. Psalm 16:11 "You will show me the way of life, granting me the joy of your presence and the pleasures of living with you forever." Those words really spoke to me. I was weepy, missing my son.... and now after reading all the above I am reminded to focus on the prize. We will live even after death and I will see my son again. I hope this will help someone else today just as it did me....someone who has lost focus and needs a boost, a reminder.

“I have finished the race, and I have remained faithful. And now the prize awaits me—the crown of righteousness that the Lord, the righteous Judge, will give me on that great day of his return. And the prize is not just for me but for all who eagerly look forward to his glorious return.”

God Bless you all.

Love, Mary
Comment by Deirdre Stinchcomb on October 12, 2008 at 3:39pm
All of the verses and post that have been posted on this board are so inspiring and wonderful. I needed to read all of this today as I am feeling very overwhelmed and scared. Our son Nixon will be having surgery in Cincinnati on Nov. 3 to release hamstring and hip tension. There is a possibility that surgery won't happen if Nixon doesn't pass his PFTs plus we have to make 2 trips to Cincinnati from GA and that's going to be EXPENSIVE. So reading all the verses and the "Dana Blessing" story has helped me more than any of you will know. Thank you for all being here and sharing. It is by being associated with other parents that gets me through day to day!
Comment by Kristi Powell on October 9, 2008 at 3:24pm
Lori, thanks for sharing that. In my line of work, I work with children birth to age 3 ( early intervention services). Anyway, I have SEVERAL clients that are from the NICU or PICU and lots of babies born premature. In fact, I have one baby right now that was born at 22 weeks! I would love to share that with some of the parents...thanks!
Comment by Mary Sahagun on October 8, 2008 at 2:52pm
Lori, that was beautiful! It brought chills to me as I remember some of Kenny's last words. I have no doubt that the Lord is by the side of his children. With Kenny's passing we experienced his presence first hand. Amazing!!!

Mary
Comment by Lori Ware on October 6, 2008 at 3:52pm
This was just sent to me, it is long, but worth reading..I know our sons are cradled by our loving God.

The smell of rain
At the end of this story, it gives you two options. I
think you will figure out what option I chose.
A cold March wind danced
around the dead of night in
Dallas as the doctor walked
into the small hospital room
of Diana Blessing. She was
still groggy from surgery.
Her husband, David, held her
hand as they braced
themselves for the latest
news.
That afternoon of March 10,
1991, complications had
forced Diana, only 24-weeks
pregnant, to undergo an
emergency Cesarean to
deliver couple's new
daughter, Dana Lu Blessing.
At 12 inches long and
weighing only one pound
nine ounces, they already
knew she was perilously
premature.
Still, the doctor's soft words dropped
like bombs.
"I don't think she's going to
make it," he said, as kindly as
he could.
"There's only a 10-percent
chance she will live through
the night, and even then, if by
some slim chance she does
make it, her future could be a
very cruel one"
Numb with disbelief, David
and Diana listened as the
doctor described the
devastating problems Dana
would likely face if she
survived.
She would never walk, she
would never talk, she would
probably be blind, and she
would certainly be prone to
other catastrophic conditions
from cerebral palsy to
complete mental retardation,
and on and on.
"No! No!" was all Diana could say.
She and David, with their 5-
year-old son Dustin, had long
dreamed of the day they
would have a daughter to
become a family of four.
Now, within a matter of
hours, that dream was
slipping away
But as those first days
passed, a new agony set in
for David and Diana.
Because Dana's
underdeveloped nervous
system was essentially 'raw',
the lightest kiss or caress
only intensified her
discomfort, so they couldn't
even cradle their tiny baby
girl against their chests to
offer the strength of their
love.
All they could do, as Dana
struggled alone beneath the
ultraviolet light in the tangle of
tubes and wires, was to pray
that God would stay close to
their precious little girl.
There was never a moment
when Dana suddenly grew
stronger.
But as the weeks went by,
she did slowly gain an ounce
of weight here and an ounce
of strength there.
At last, when Dana turned
two months old. her parents
were able to hold her in their
arms for the very first time.
And two months later, though
doctors continued to gently
but grimly warn that her
chances of surviving, much
less living any kind of normal
life, were next to zero, Dana
went home from the hospital,
just as her mother had
predicted.
Five years later, when Dana
was a petite but feisty young
girl with glittering gray eyes
and an unquenchable zest for
life.
She showed no signs
whatsoever of any mental or
physical impairment. Simply,
she was everything a little girl
can be and more. But that
happy ending is far from the
end of her story.
One blistering afternoon in
the summer of 1996 near her
home in Irving, Texas, Dana
was sitting in her mother's lap
in the bleachers of a local ball
park where her brother
Dustin's baseball team was
practicing.
As always, Dana was
chattering nonstop with her
mother and several other
adults sitting nearby when
she suddenly fell silent.
Hugging her arms across her
chest, little Dana asked, "Do
you smell that?"
Smelling the air and detecting
the approach of a
thunderstorm, Diana replied,
"Yes, it smells like rain."
Dana closed her eyes and
again asked, "Do you smell
that?"
Once again, her mother
replied, "Yes, I think we're
about to get wet. It smells like
rain."
Still caught in the moment,
Dana shook her head, patted
her thin shoulders with her
small hands and loudly
announced,
"No, it smells like Him.
It smells like God when you
lay your head on His chest."
Tears blurred Diana's eyes
as Dana happily hopped
down to play with the other
children.
Before the rains came, her
daughter's words confirmed
what Diana and all the
members of the extended
Blessing family had known, at
least in their hearts, all along.
During those long days and
nights of her first two months
of her life, when her nerves
were too sensitive for them to
touch her, God was holding
Dana on His chest and it is
His loving scent that she
remembers so well.
Comment by Veronica E. on October 1, 2008 at 4:05pm
I know what you mean, Julie and Rhiannon. While I would never wish illnesses on anyone or their children, there is some comfort when I realize Max doesn't have the worst disease in the world. I feel so blessed that we will have several years without symptoms, and Max can start his life walking and doing things that other boys can do. It was hard going to Max's appointment at Texas Children's Hospital in Houston, seeing little bitty kids who had already gone through multiple, painful surgeries. I'm glad that if Max does have to have surgery one day, he'll be old enough to at least understand it.
Comment by Julie on October 1, 2008 at 12:58pm
Veronica
That is a great verse. Some days the only way I get through the day is knowing that someone else is going through much harder times then I. I feel awful to think that way, but I am thankful that I have Aiden for whatever time it will be and I know he could be worse.

Julie
Comment by Rhiannon Traigle on September 30, 2008 at 5:46am
Veronica,
I love that verse! It reminds me of something another parent with a child with MD told me when we were first diagnosed....someone told him this as well...

If we all were lined up in this world according to how great our problems were, we would each turn and find that someone was standing behind us with problems greater than our own...this would continue on until the end of the line when that last guy turns and finds that no one is behind him.

This dad looked at me and said, "You are not him...you are not the last guy in line. Although your problems seem great, there are others who have greater suffering than you." I often remind myself when I am down that I am indeed NOT 'the last guy in line.' So, I know that no test or temptation that comes my way is beyond the course of what others have had to face, in fact, with God's grace, I am truly blessed.
 

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