Friday, May 27, 2005

Angels

I came across this poem one day and it seemed like it was appropriate for every parent who has lost a child under any circumstance. I am not sure who wrote it but I would like to share.

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Some angels come to visit us,
and be our guests one day.
We know not why they choose our home,
or just how long they stay.
We developed such a love for them,
we didn't stop to think.
That when they had to leave us,
how our hopes and hearts would sink.
They brought much joy and happiness,
but a little sorrow too,
sometimes we were worried,
we knew not what to do.
In this glorious life of sunshine, we must also have some rain,
and amid our joy and happiness,
we must also get some pain,
we are in a state of sadness now,
and repeat a silent prayer,
for those heavenly angels
God placed within our care,

Sunday, May 15, 2005

a place I Want to be

As you drive down the turning paved road you can see the enormous lodge looming ahead. Down in a small canyon lived a special camp for some VERY special campers. I attended the Moncrief Mountain Ranch camp for 6 years. It really helped me cope with post transplant life those first 6 years. It was a place I yearned to go back too year after year. When given writing assignments in school I would often write about my expereinces there. Below is one of those writings.
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It's peaceful here. During the day I could hear the running of the rivers, horses, wolves, and birds chirping. While I walk along the narrow turning path I can hear the padding of other's feet, sticks breaking with a crunch, and an occasional giggle. Here I feel light and dreamy like nothing can get me down. I can smell the pine all around me and feel the warm sun beating down my back.The evening is just as peaceful. I can feel the warmth of the crackling fire and feel a sudden blow of cool air on my back as I snuggle even closer to the fire . I can hear the calling of an owl as I sit in front of the fire on a tree stump. The moquitos nip as I sit with friends talking and singing. The night sky is clear and I can gaze at the moon and stars.A place to think of and yearn for while back at home in a hospital bed.

This camp is now closed. It closed after the summer of 1995. Rumor was someone sued the camp. Becuase of the mistake of one child this place of memories and yearning is now gone.:(
My friends and I miss it dearly and nothing will ever replace it.

Wednesday, May 11, 2005

Happy Mother's Day

Happy Mother's Day

By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.
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Every mother wants so much more.
She wants a perfectly healthy baby with a round head,
rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park
and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce,
a spine that didn't fuse,
a missing chromosome or a palate that didn't close.
The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you didn't see the kick ball coming,
and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later,
took him in for a routine visit, or scheduled him for a checkup,
and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?

There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen,
quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications,
and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the cliches and the platitudes,
the well-intentioned souls explaining how God is at work
when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you,
painting you as hero and saint,
when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,
"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack.
You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July,
counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church and my sister-in-law.
You're a wonder.


Lori Borgman is a syndicated columnist and author of All Stressed Up and No Place To Go, her latest humor book now available wherever books are sold.

Tuesday, May 10, 2005

The Frog Story

This is a little known story about faith. It was spurred on by a single email; from a friend I don’t even know that well. It’s amazing how one seemingly insignificant event can change a life forever. This story is about a frog, but by the time you are finished reading you will understand why…it’s not about the frog.

In June of 2002, my daughter Drew had a life threatening "911" bleed caused by complications from her liver disease. That day holds the single most horrific moment of my life. The vision was something out of a horror movie. But this was not a movie. It was MY husband covered from head to toe in MY daughter’s blood because he was holding her when she started to vomit. The bathroom walls were splattered with blood. But the scariest thing of all is that we almost lost her that day. After we were released from the hospital I was in the grip of worry that was all consuming. They told us that until Drew got her liver transplant it could happen again. I wondered where we would be when the next volcano of blood would erupt. Would we be in the market? At a birthday party? I wanted to shield others from the horror that I knew could happen. It was too much to bear. I needed to overcome this worry. It was suffocating me.
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July 9th I received an email... the subject line read F.R.O.G.

Here is the email exactly as it was sent.

__________________________________________________________________________

F.R.O.G.

I was told a story about a lady in the hospital who was near death when an area Chaplain came to visit her. This Chaplain was a very young female with long blond hair. She listened to the lady who was ill and left her a small gift for comfort. It was a tiny ceramic frog.

The next day one of the people from the lady's church came to visit. The lady told her friend about the beautiful young Chaplain who had come to visit her.

The friend was so impressed with the way the lady had improved and felt the need to talk to the young Chaplain. In her search to find the young gal, she was repeatedly reassured that the chaplains are never very young and that there was never a gal that fit the description given.

Upon returning to the lady in the hospital, a visiting nurse entered the room and noticed the ceramic frog. The nurse made the comment "I see you have a guardian angel with you." As she held the little frog.

We asked why she made the comment and we were informed that the frog stood for:

(F) Fully (R ) Rely (O) On (G) God

_______________________________________________________________________

I read the email that day in July with no expectations or understanding of its meaning. At the end of the email it said “Send this to eight people and something amazing will happen in four days” or something like that... I hardly ever forward stuff that says pass this on, blah blah blah. So I deleted the email and carried on with my day.

That night I was giving Drew a bath; my moments of deepest thought somehow find me there. Her precious belly in its naked splendor only caused me to worry. The Kasai scar reminded me of her battle, the road map of veins led my mind to worry. Does it look bigger today? I picked up a bath toy to distract my self. It was a scrubby-spongy thing. I recalled the day when my stepdaughter Mallory got it. We were in the checkout line at Stater Brothers when she remembered that she wanted a body scrubber... She ran back moments later laughing... "This is the only one I could find..." We both laughed, it had a silly frog on top.

Remembering this story while holding the frog was like a chain reaction of memories speeding through my head. I recalled that during all of Drew's trips to the lab for blood draws we would always bring the same stuffed animal for comfort. He is a silly, smiley, green frog!!! Then it all hit home and my throat became choked with emotion when I realized what had happened just four days before. We had taken Drew to UCLA for the first time to be evaluated for a liver transplant. Drew was scheduled to have an ultrasound. UCLA is a teaching hospital and there are usually other students and doctors who observe procedures. During the beginning of the procedure a woman in a white coat came in just for a short time. Even though we had a backpack full of toys, a DVD player playing a movie for Drew and a huge bag of M&M's the woman in the white coat asked us if Drew would like a toy. We sort of hesitated but said, "Okay…sure." She handed Drew a small plastic toy and then left. It was a small green frog.

_______________________

People wait their whole lives to receive some sort of sign from God to let them know that He is there. At that moment I felt like the Grinch who stole Christmas, during the part where his heart grew three times its size. But it wasn’t my heart that grew…it was my faith.

God has been so kind and gentle to us during all of these difficult times and now in his amazing, omnipotent way he showed me exactly what to do with my worry. Fully Rely on God. I am positive that none of this was a coincidence...

Without my friend sending me the email on that day, I would have missed the most amazing thing about God. But He knew I needed it that day, at that very moment and as always He pointed out how many times He has been there for us even on the days I wasn’t thinking about Him. He was with us. He helped me to realize that he is in control of our situation and that I can trust in him. Fully rely on him.

This is only the beginning chapter of this story, the rest is still being written. Frogs continue to be a sign of His love for my family and me. They come at times when I need them the most. Sometimes they are given to me by people who know the FROG story. Then there are the ones God sends. There have been many, many more and each is another chapter of His love for us. There are times when I feel like people wouldn’t believe how many frogs have popped up since our story began. But it’s absolutely the truth.

So now you know my story. You may never look at a frog the same way again and most importantly you know that my frog story is not about the frog.

Saturday, May 07, 2005

Hi, everybody

I'd like to thank Moreena for the invitation to join this blog and Ciara for linking me here. Anyway, I'm a 42-year-old father of two autistic/mentally retarded boys, ages 8 and 6. Both boys are energetic and frequently happy; both can be extremely violent and destructive as well. The 8-year-old is capable of speech; the 6-year-old isn't. Our family resides in the Northsore area of New Orleans, Louisiana. The boys currently reside at the St. Mary's Residential Training School in Alexandria, Louisiana, where they are given love, dignity, and round-the-clock professional care and training. Our local school system was very accommodating, but the home situation was so crazy that we decided to make use of St. Mary's, which is very much like a country boarding school run by nuns. It was devasating to place them outside the home, but I'm pleasantly surprised at how well the boys have adapted and even improved. Anyway, I look forward to conversing here.

Wednesday, May 04, 2005

My Best Teacher

Like most women, I like babies, but I always enjoyed interacting with already verbal kids more. Consequently I couldn´t wait till my kid started talking. It turned out to be, for me, a long, frustrating wait.
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A week after the diagnosis, I finally managed to dry my tears long enough to bid on a few hand-puppets.

He could talk a little by then, but he had developed his own language only we could understand and even then it often sounded bizarre to us. He was also largely echolalic, had his pronouns all confused... pretty much the classical speech pattern of a verbal autistic.

He managed to make his needs known, but I wanted to know him.

I introduced the boy puppet first, while my son was lining up his Bob the Builder toys.

Puppet: "Hi, my name is Thomas. What´s your name?"

Son: No answer. He´s never answered this question before. I wasn´t even sure if he understood.

Puppet: "Do you have a name?"

Son: "No."

Puppet: "Ok, how would you like to be called. Max, Alexander..."

Son: "Alexander." (Not his name, but a favorite from a cartoon.)

We pretended he was called Alexander for a while, and he showed me all of his Bob Toys and told me their names and colors. I could tell he was starting to enjoy this. At some point I introduced a second puppet, a girl.

Boy Puppet: "Hi Anna. So glad you could come! Look, I have a new friend."

Girl Puppet: "Oh, he looks nice. Hi there, what´s your name?" I held my breath.

Son, in a sweet, shy voice: "My name is Sam.*"

I thought I died and went to heaven. He had never answered this question before, ever, despite much coaxing and bribing. He wouldn´t talk to humans, but for some reason he would talk with the puppets, and my beginner´s luck gave me hope to move forward.

________________________

"Look C., look at the tulips!"

I´m driving son to the speech therapist. As usual, the traffic is atrocious, and I´m keenly aware of the fact that we´re running 10 min. late. I feel stressed. Given that he points out every tulip he sees to me, I was tempted to overhear him. But then it hit me.

"Look C., look at the tulips!"

My son cannot talk about the abstract. But there´s one thing he see and, therefore, can grasp and that´s nature. It´s all he can think about, therefore it´s all he can talk about. So he talks constanly, about the clouds, and the rain, and the snow, the flowers and the rivers...

Thanks to him, I know now every single place in the vicinty that has tulips and could probably tell you the colors of most of them. And he´s got me so well-trained, that when I spot some he hasn´t seen yet, I rush to point them out him, so that I can hear the delight in his voice.

But the most important thing he taught me, was to be more aware of the nature around me. To take time and smell the roses. It´s something we tend to forget when we get older and I´m grateful he´s here to remind me.

"Who do they belong to?" he asked.

I was tempted to say "City Hall" but I answered.

"To all of us, son. To all of us."