Tuesday, April 30, 2013
prayers for a dear child, and her heartbroken family
This post is going to be one that will possibly upset you
in some form, it is written with the permission of the beautiful
8 year old child's parents I am about to blog about.
Sharing their pain, their little girls pain is not an easy task for
them to decide and yet they not only give me permission
to share but thank me because in writing the blog,
awareness for this disease will be spread.
Remember it, recite it, pray it, follow it on Facebook.
Paige is a beautiful, talented little girl who is 8 years old
and not only fighting for her life, but suffering quite a bit right now.
Baby boy and KD were the first to tell me about sweet Paige.
BB was pretty shook up about her as
he is beginning a new position where her daddy works
and knows her Mommy because she works at the training center
where he attends.
He texts me one morning asking me if I have every heard of
Steven-Johnson's Syndrome and the more
rare form of it called Toxic Epidermal Necrolysis.
He gives me the facebook site to follow
(Paige Lacombe Updates)
and horror fills me as I read of this dreaded disease and
what it does to its victims.
On the short form, it begins as an allergic reaction
to a medication that causes third degree burns to the body
both inside and out. It spares no areas and yet
it has the luxury of not effecting the brain so that
all of her suffering is not forgotten or not felt by a little child.
Her Parents are on a terrible roller coaster ride with their
sweet oldest child hanging off the side.
Paige had 80% of her body affected, was in ICU for
many days and now, having just had her 6th surgery
all in hopes to save her sight, her parents are beside themselves.
Having two other children, ages 3 and 10 months,
makes it even harder to be away from Lafayette, where they live,
and stay in Texas children's burn center.
Imagine, having your child critically ill, in ICU,
they shave her head in hopes of causing less infection,
they put special contacts in her eyes to stop her blindness,
a feeding tube because you are told that what they see on the
outside is what is also happening on the inside.
Enough, right? and yet they live it each day
I speak often of the "helicopter view" God has
over all of us, what makes no sense to us here,
God can see from a higher view, I don't believe
He causes suffering in his favorite, His children,
but there has to be a reason or none of this makes sense.
Paige is living through this possibly for the lessons
it will give to someone else.
Lessons of courage of a little girl and her awesome parents.
I cringe as I read this morning the pain of her mothers writings.
A parent's worse nightmares.
Having been a critically ill child I share with Paige's parents
that for me, most of my memories are the good ones from that time.
Resilience is something an ill child has and others wonder where
that came from. They are right, Paige will be forever changed,
never to be the little girl she was before, but in exchange,
when this is all over, she will be a new and improved version
of her former self. She will be kinder and caring,
very sensitive to the suffering of others and in turn,
will help so many people in our world. She is a special child,
special parents. I read in awe of this family's bravery, courage
and also their honesty when sharing their life with us right now.
It takes a special family to be able to put it all out there for
the world to see, the good, the bad, the ugly but
always, always, always, the hope, the faith, amazing!
Prayers for all, add to prayer lists,
add to your nightly prayers, dedicate your masses to Paige and
Many have already been changed by this little girls bravery
as well as her parents.