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WE HAVE MOVED......http://www.caringbridge.org/visit/rawlinsboys Welcome To Sean & Daniel's Rainbow 
~~~Sean & Daniel~~~
Spot for Oley Foundation
We are the Rawlins brothers.
I am Sean and I am almost 7 yrs old. I have VACTERL syndrome, FTT, GERD, Chronic lung Disease, Asthma, DGE and so many other things, It would take pages to list them all. I have two feeding tubes, a g and a j. I have most of my nutrition via my j. My mom created this site to keep everyone updated about me. Now we get to add my younger brother Daniel, who is 5, to our site to keep everyone updated about him and what he has.
Daniel has Arnold-Chiari Malformation I. More tests are being done to rule out ACMII and some other things going along with all this. As you can see we are keeping our parents, especially our mom, busy. We have two other brothers, Paul, who is a big teenager and Peter who is 3. My mom tells us boys are noise with dirt on it. Our parents are Ken and Shelly.
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God Sent To Me An Angel
God sent to me an angel,
It had a broken wing.
I bent my head and wondered,
"How could God do such a thing?"
When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said, "Listen and you will see."
"My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.
I send each one from Heaven
and I place it in the care
of those who know my mercy-
those with love to spare.
Sometimes I take them back again,
sometimes I let them stay.
No matter what may happen
I am never far away.
So if you find an angel
and don't know what to do,
remember I am with you.
Love is all I ask of you."
-- Author Unknown<
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Where Are the Parents?
By Sue Stuyvesant
Where are the parents? They are on the phone to doctors and hospitals and
fighting with insurance companies, wading through the red tape in order that
their child's medical needs can be properly addressed. They are buried under a
mountain of paperwork and medical bills, trying to make sense of a system that
seems designed to confuse and intimidate all but the very savvy.
Where are the parents? They are at home, diapering their 15-year-old son, or
trying to lift their 100 lb. daughter onto the toilet. They are spending an
hour at each meal to feed a child who cannot chew, or laboriously and carefully
feeding their child through a g-tube. They are administering medications,
changing catheters and switching oxygen tanks.
Where are the parents? They are sitting, bleary eyed and exhausted, in
hospital emergency rooms, waiting for tests results to come back and wondering:
is
this the time when my child doesn't pull through? The are sitting patiently,
in hospital rooms as their child recovers from yet another surgery to lengthen
hamstrings or straighten backs or repair a faulty internal organ. They are
waiting in long lines in county clinics because no insurance company will touch
their child.
Where are the parents? They are sleeping in shifts because their child won't
sleep more than 2 or 3 hours a night, and must constantly be watched, lest he
do himself, or another member of the family, harm. They are sitting at home
with their child because family and friends are either too intimidated or too
unwilling to help with childcare and the state agencies that are designed to
help are suffering cut backs of there own.
Where are the parents? They are trying to spend time with their non-disabled
children, as they try to make up for the extra time and effort that is
critical to keeping their disabled child alive. They are struggling to keep a
marriage together, because adversity does not always bring you closer. They are
working 2 and sometimes 3 jobs in order to keep up with the extra expenses. And
sometimes they are a single parent struggling to do it all by themselves.
Where are the parents? They are trying to survive in a society that pays lip
service to helping those in need, as long as it doesn't cost them anything.
They are trying to patch their broken dreams together so that they might have
some sort of normal life for their children and their families.
They are busy, trying to survive.
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A Child’s Angel
Once upon a time, there was a child ready to be born. So one day he asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?"
God replied, "Among the many angels, I chose one for you. She will be waiting for you and will take care of you."
The child said, "But tell me, here in Heaven, I don't do anything else but sing and smile. That's enough for me to be happy. And how am I going to be able to understand when people talk to me, if I don't know the language that men talk?"
God replied, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."
The child questioned, "And what am I going to do when I want to talk to you?"
God replied, "Your angel will place your hands together and will teach you how to pray."
The child said, "I've heard that there are bad men on earth. Who will protect me?"
God replied, "Your angel will defend you even if it means risking her own life."
The child said, "But I will always be sad because I will not see you anymore."
God replied, "Your angel will always talk to you about Me and will teach you the way for you to come back to me, even though I will always be next to you."
At that moment, there was much peace in Heaven, but voices from earth could already be heard. The child, in a hurry, asked softly, "Oh God! If I am about to leave now, please tell me my angel's name."
God replied, "Your angel's name is of no importance. You will simply call her MOMMY."
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The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social
pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for
propagation with great care and deliberation. As He observes, He instructs
His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to
profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped
child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who
does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of
self-pity and despair. Once the shock and resentment wears off, she'll
handle it."
"I watched her today. She has that feeling of self and independence that
is so rare and so necessary in a mother. You see, the child I'm going to
give her has her own world. She has to make her live in her world and
that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter,
I can fix that. This one is perfect - she has just enough selfishness." The
angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a child
less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take for granted a 'spoken word'". She will consider a
step" ordinary. When her child says 'Momma' for the first time, she will
be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty,
prejudice....and allow her to rise above them. She will never be alone.
I will be at her side every minute of every day of her life, because she
is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in
mid-air.
God smiles, "A mirror will suffice."
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He Is My Son
Words and Music by Mark Schultz
From the recording: Mark Schultz, Track #3.
I'm down on my knees again tonight,
I'm hoppin' this prayer will turn out right.
See, there is a boy that needs Your help.
I've done all that I can do myself
His mother is tired,
I'm sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.
Sometimes late at night I watch him sleep,
I dream of the boy he'd like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there.
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow.
See, he's not just anyone.
Can You hear me?
Can You see him?
Please don't leave him,
He's my son.
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'Have I not commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest. Joshua 1:9
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Always FROG! (Fully Rely On God)
PUSH! (Pray Until Something Happens)
Journal
Sunday, May 28, 2006 8:30 PM CDT I have forgotten about this page! I am so use to updating the other one, visit/rawlinsboys, with what is going on with the boys.
Sean has been sick and is undergoing some major testing of his whole body and DNA. They feel it is a very rare type of Mitochondrial and Dysautonomic disorders.... fun stuff. Not really, but we try to make it fun.
We have a night nurse and we love him dearly. Sleep has entered back into our lives until the weekend when we don't have a nurse.... it is amazing how wiped out we can feel! Our Pediatrician is working on getting us more nursing hours...
Anyways....come visit us at www.caringbridge.org/visit/rawlinsboys for all our lastest and greatest updates.
Read Journal History
Hospital Information: Patient Room: HOME! Childrens Hospital Los Angeles
Los Angeles, CA
Links: http://roseygirl7.tripod.com Rose's Head Hugges of SC
http://caringbridge.org/visit/rawlinsboys News about Sean and Daniel
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