Bring Me That Horizon

Welcome to jennyweber dot com

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Home of Jenny the Pirate

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Our four children

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Our eight grandchildren

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This will go better if you

check your expectations at the door.

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We're not big on logic

but there's no shortage of irony.

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 Nice is different than good.

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Oh and ...

I flunked charm school.

So what.

Can't write anything.

> Jennifer <

Causing considerable consternation
to many fine folk since 1957

Pepper and me ... Seattle 1962

  

In The Market, As It Were

 

 

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Contributor to

American Cemetery

published by Kates-Boylston

Hoist The Colors

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Insist on yourself; never imitate.

Your own gift you can present

every moment

with the cumulative force

of a whole life’s cultivation;

but of the adopted talent of another

you have only an extemporaneous

half possession.

That which each can do best,

none but his Maker can teach him.

> Ralph Waldo Emerson <

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Represent:

The Black Velvet Coat

Belay That!

This blog does not contain and its author will not condone profanity, crude language, or verbal abuse. Commenters, you are welcome to speak your mind but do not cuss or I will delete either the word or your entire comment, depending on my mood. Continued use of bad words or inappropriate sentiments will result in the offending individual being banned, after which they'll be obliged to walk the plank. Thankee for your understanding and compliance.

> Jenny the Pirate <

A Pistol With One Shot

Ecstatically shooting everything in sight using my beloved Nikon D3100 with AF-S DX Nikkor 18-55mm 1:3.5-5.6G VR kit lens and AF-S Nikkor 50mm f/1.8 G prime lens.

Also capturing outrageous beauty left and right with my Nikon D7000 blissfully married to my Nikkor 85mm f/1.4D AF prime glass. Don't be jeal.

And then there was the Nikon AF-S DX NIKKOR 18-200mm f:3.5-5.6G ED VR II zoom. We're done here.

Dying Is A Day Worth Living For

I am a taphophile

Word. Photo Jennifer Weber 2010

Great things are happening at

Find A Grave

If you don't believe me, click the pics.

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Dying is a wild night

and a new road.

Emily Dickinson

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REMEMBRANCE

When I am gone

Please remember me

 As a heartfelt laugh,

 As a tenderness.

 Hold fast to the image of me

When my soul was on fire,

The light of love shining

Through my eyes.

Remember me when I was singing

And seemed to know my way.

Remember always

When we were together

And time stood still.

Remember most not what I did,

Or who I was;

Oh please remember me

For what I always desired to be:

A smile on the face of God.

David Robert Brooks

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 Do not regret growing older. It is a privilege denied to many.

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Keep To The Code

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You Want To Find This
The Promise Of Redemption

Therefore seeing we have this ministry, as we have received mercy, we faint not;

But have renounced the hidden things of dishonesty, not walking in craftiness, nor handling the word of God deceitfully; but by manifestation of the truth commending ourselves to every man's conscience in the sight of God.

But if our gospel be hid, it is hid to them that are lost:

In whom the god of this world hath blinded the minds of them which believe not, lest the light of the glorious gospel of Christ, who is the image of God, should shine unto them.

For we preach not ourselves, but Christ Jesus the Lord; and ourselves your servants for Jesus' sake.

For God, who commanded the light to shine out of darkness, hath shined in our hearts, to give the light of the knowledge of the glory of God in the face of Jesus Christ.

But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us.

We are troubled on every side, yet not distressed; we are perplexed, but not in despair;

Persecuted, but not forsaken; cast down, but not destroyed;

Always bearing about in the body the dying of the Lord Jesus, that the life also of Jesus might be made manifest in our body.

For we which live are alway delivered unto death for Jesus' sake, that the life also of Jesus might be made manifest in our mortal flesh.

So then death worketh in us, but life in you.

We having the same spirit of faith, according as it is written, I BELIEVED, AND THEREFORE HAVE I SPOKEN; we also believe, and therefore speak;

Knowing that he which raised up the Lord Jesus shall raise up us also by Jesus, and shall present us with you.

For all things are for your sakes, that the abundant grace might through the thanksgiving of many redound to the glory of God.

For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day.

For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;

While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal.

II Corinthians 4

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THE DREAMERS

In the dawn of the day of ages,
 In the youth of a wondrous race,
 'Twas the dreamer who saw the marvel,
 'Twas the dreamer who saw God's face.


On the mountains and in the valleys,
By the banks of the crystal stream,
He wandered whose eyes grew heavy
With the grandeur of his dream.

The seer whose grave none knoweth,
The leader who rent the sea,
The lover of men who, smiling,
Walked safe on Galilee --

All dreamed their dreams and whispered
To the weary and worn and sad
Of a vision that passeth knowledge.
They said to the world: "Be glad!

"Be glad for the words we utter,
Be glad for the dreams we dream;
Be glad, for the shadows fleeing
Shall let God's sunlight beam."

But the dreams and the dreamers vanish,
The world with its cares grows old;
The night, with the stars that gem it,
Is passing fair, but cold.

What light in the heavens shining
Shall the eye of the dreamer see?
Was the glory of old a phantom,
The wraith of a mockery?

Oh, man, with your soul that crieth
In gloom for a guiding gleam,
To you are the voices speaking
Of those who dream their dream.

If their vision be false and fleeting,
If its glory delude their sight --
Ah, well, 'tis a dream shall brighten
The long, dark hours of night.

> Edward Sims Van Zile <

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Freedom is a fragile thing and is never more than one generation away from extinction. It is not ours by inheritance; it must be fought for and defended constantly by each generation, for it comes only once to a people. Those who have known freedom and then lost it, have never known it again.

~ Ronald Reagan

Photo Jennifer Weber 2010

Not Without My Effects

My Compass Works Fine

The Courage Of Our Hearts

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Daft Like Jack

 "I can name fingers and point names ..."

And We'll Sing It All The Time
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That Dog Is Never Going To Move

~ RIP JAVIER ~

1999 - 2016

Columbia's Finest Chihuahua

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~ RIP SHILOH ~

2017 - 2021

My Tar Heel Granddog

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~ RIP RAMBO ~

2008 - 2022

Andrew's Beloved Pet

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Main | The vintage people »
Wednesday
Aug312011

Melanie in so many words ... and pictures

I need to talk about my Melanie. This has been welling up for awhile.

For those of you who may not be aware, Melanie is our eldest grandchild. The first child of our first child.

And as everybody knows, there can only be one first.

Melanie was born in Williamsport, Pennsylvania, on December 21, 2004. In a few months she'll turn seven.

She arrived in mid-afternoon on the shortest day of the year and it got very dark indeed within moments of her birth.

Melanie was not breathing when she emerged from her mother. The doctors got her up and running momentarily, but clearly she'd sustained some damage. How much, we will never know.

Then there were the other issues: a cleft palate (minus a cleft lip), and a condition known as micrognathia, or small jaw.

A diagnosis was quickly made of Pierre Robin Syndrome. None of us had ever heard of it.

The most pressing problems at first were Melanie's breathing difficulties and an inability to suck normally.

Melanie came home from the hospital on Christmas Day, after new-mom Stephanie had mastered getting formula into her baby daughter with a Haberman feeder.

On the morning of the first night Melanie spent at home, I got up to find Stephanie sitting in the living room where she'd been for at least eight hours, coaxing Melanie to ingest nourishment one agonizing drop at a time.

My daughter, who is pale-skinned to begin with, was nearly transparent with fatigue.

We sent her to bed with instructions to sleep until she was ready to get up.

When the home-health nurse arrived later that morning, a feeding tube was inserted through Melanie's nose so that other family members could -- using an outsized plunger-type device -- deliver the formula straight to the baby's stomach.

Aunt Audrey became a real pro at that. Erica ran her own special brand of level-headed auntly interference. Stephanie was able to rest undisturbed that day and we got some very welcome hands-on time with our new baby.

We left for home on New Year's Eve. It wasn't easy to do.

As the Pennsylvania winter wore on, Melanie landed back in the hospital a few times with respiratory distress. Due to ongoing breathing and feeding issues, she gained weight with excruciating slowness.

When I returned to Williamsport in early March of 2005, at nearly three months of age Melly still looked remarkably like a newborn ... but with her little head held high and long stick-thin legs hanging down.

My granddaughter resembled nothing so much as a tiny elfin being, bewildered as she was determined. When her daddy handed her to me and she snuggled into my arms, sucking on a minuscule finger, making a subdued throaty nom-nom noise to herself, I thought my heart would break.

Each breath was labored as Melanie struggled to get an adequate supply of air through her small windpipe. Persuading her to eat enough was still a monumental task. Her muscle tone was poor; nearly all of her energy was spent breathing.

Due to Melanie's glacial-paced weight gain and apparent failure to thrive, a few (I prefer to believe well-meaning) long-distance family members hinted on more than one occasion that Stephanie needed "to be encouraged" to feed Melanie more formula more often.

To do better!

As though my daughter had not been quite diligent enough in properly caring for her child.

But anyone who observed Stephanie with her baby even once -- and I did, more than once -- knew the lengths to which she would go to get the prescribed amount of formula into Melly's tummy.

Let's pull over and park here for a mo.

Are not the best coaches always in the stands? The Monday-morning quarterback is well-established lore. But when it comes to other people's children, a wise woman once told me you'd better think carefully before you speak.

Because usually in such cases, you are not in possession of all the facts. Consequently your freely-shared opinions and suggestions have the potential to be more hurtful than you realize.

Never forget: no matter how close you are (or think you are) to a situation of a mother dealing with a disabled child -- or any child -- and regardless of how many wisdom-dispensing privileges you perceive to be yours, unsolicited advice is never anything more or less than a vague form of criticism.

All any new mother needs is prayer and encouragement. Unless she asks for more than that, don't offer.

The only exception would be gifts for the baby and delicious donated meals, which are always welcome.

At any rate, God has blessed and provided for Melanie and her family. Her palate was closed in a single surgery when she was eighteen months old, by the gifted Dr. Joseph G. DeSantis at Geisinger Medical Center in Danville, Pennsylvania.

Although all of her normal childhood milestones were delayed and she still moves with a somewhat awkward gait, Melanie loves to run and play.

She goes to school in a special classroom presided over by exceptionally dedicated teachers and with classmates who have various physical and mental challenges of their own.

But although she uses fairly effective forms of communication -- to include sign language and a few one-syllable words -- Melanie has yet to talk to us.

Nobody knows why. Dozens of doctors have evaluated her and not one has offered an explanation.

I cannot tell you how often I wonder what my Melanie would say to me if only she could. Sometimes I wake up thinking about it, and I ponder it for most of the day. What does Melly think about her life and the world around her?

What does she she think of me and her Papaw, and of her doting grandparents in Pennsylvania, and her many aunts, uncles, and cousins?

Does she wonder why I talk so much? Does she wish I would stop grabbing her and hugging her till her feet are dangling six inches off the floor? Does she know how important she is to me and to all of us?

For the past couple of years TG has been working in North Carolina much of the time. As such, on most Monday nights he was invited to have the evening meal at Stephanie and Joel's house. Because that would mean an extra chair was needed at the supper table, Melanie's job as everybody assembled was to drag her pink chair from the living room play area over to the table, and sit in it.

That's all over now; TG is home for good. No more Papaw showing up around suppertime on Monday nights. And yet Stephanie told me that for the past few Mondays, when called for supper, Melanie automatically drags her pink chair to the table. Nobody told her it was Papaw's usual night to join them, or that he wasn't coming.

Melanie is a happy child, and obedient. She enjoys life. Her smile could melt the polar ice cap. She has many favorite activities and seems to revel in her daily routines. She loves to be read to, and she likes to be around people.

Unlike the early days, she now eats like an over-the-road trucker. Set a plate of food down in front of that young'un and turn around to tidy up, and when you look back she'll have scarfed half of it down without dropping a crumb.

As often as not she makes it clear she'd appreciate seconds, and she inhales those too.

But Melly's stamina is short-lived; she's frail. There are some pesky food allergies and her skin is prone to itchy rashes. Her immune defenses tend to be low, especially during the cold-weather months.

As for me? I'm crazy about her. We're all over the moon about our wee Melly. You can't not love her; she's just too cute and too precious.

I have told my daughter many times: whatever happens or doesn't happen with Melanie, no matter how much we ever know or never know, we'll simply love her and take care of her and forever cherish the gift of her unique and irreplaceable life.

(Of course that's easy for me to say. It's Stephanie -- with Joel's support and help, of course -- who does the daily heavy lifting, with the irrepressible Allissa ever at her heels, and another baby due in February.)

It's all good. Melanie is fearfully and wonderfully made, and she is ours, and we are eternally grateful.

Come what may.

The LORD hath done great things for us; whereof we are glad.

Psalm 126:3

Reader Comments (9)

A beautiful post. I've read your others about Melanie, but I didn't realize that she does not speak.

I see you mentioned "fearfully and wonderfully made" from scripture. Have you read the book titlede "Fearfully and Wonderfully Made"? Written by Phillip Yancy and Paul Brand, it has been updated over the years I believe. I read it years and years ago and was deeply touched by it.

http://www.amazon.com/Fearfully-Wonderfully-Made-Philip-Yancey/dp/031035451X

Here is the product review, I think you would appreciate it:

Product Description
Mysterious, intricate, pulsing with energy... The human body is an endlessly fascinating repository of secrets. The miracle of the skin, the strength and structure of the bones, the dynamic balance of the muscles . . .your physical being is knit according to a pattern of incredible purpose. In Fearfully and Wonderfully Made, renowned surgeon Dr. Paul Brand and best-selling writer Philip Yancey explore the human body. Join them in a remarkable journey through inner space -- a spellbinding world of cells, systems, and chemistry that bears the impress of a still deeper, unseen reality. This Gold medallion Award-winning book uncovers eternal statements that God has made in the very structure of our bodies, presenting captivating insights into the Body of Christ.
From the Publisher
Philip Yancey teams with Dr. Paul Brand in a spellbinding exploration of the human body--that delicate fabric of cells as awesome and mysterious as the galaxies of space. In Fearfully and Wonderfully Made, the award-winning writer and the renowned surgeon together uncover eternal statements God has made in the very structure of our bodies.

August 31, 2011 | Unregistered CommenterDebbie

Well, that was a sneaky way to drop the big news! Or did I miss something? Hooray for new grandbabies!
Does Melly hum? Just wondering. I have seen many non-verbal people start to talk with music therapy.

August 31, 2011 | Unregistered CommenterSue the Hobbit

Many hugs all round...

Especially to Mommy Stephanie...

I send this again, because my first comment seems to have *disappeared.* -sigh-

August 31, 2011 | Unregistered CommenterAunt Amelia

This is one of your best posts ever! I've read your other posts about Melanie, but this one really shared about he early life and it also just shone with the love you all feel for her. Melanie is blessed to have such a loving family and you are all blessed to have her!

August 31, 2011 | Unregistered CommenterMari

I always think children are a gift to us, and Melly is no exception, look at the love that child keeps in your family. And you`ve made her love shine for us as well, imagine her dragging her pink chair in, isn`t she precious.

August 31, 2011 | Unregistered Commenterirene

I read this last night before I tilted off into dreamland and didn't leave a comment at the time. I was too sleepy and on my ipad.

This post made me cry and it also made me cheer. I dearly love fighters. Scrappers. And your family has them! They have soul and heart. Your granddaughter is precious. I could see "you" in many of those photos, especially the dress-up one. Hahaha! The expression and joy in that moment is priceless. Your family is priceless, having to endure the struggle, but celebrating the achievements. God bless your daughter and son in law, along with Melly's sister too.

Melly is such a a little angel. There are conversations going on in her little noggin. I can see it in her eyes! I pray that one day she will share those conversations with all of the those who love her dearly.

September 1, 2011 | Unregistered CommenterDonna M.

Okay I am Johnny come lately, CONGRATULATIONS, you all must be thrilled.

September 1, 2011 | Unregistered Commenterirene

She is Absolutely, a Gift from God!
My sister and my nephew were born with cerebral palsey...the things you learn from them are Amazing! I think they make you a better person. I like to think so...
Much love to you Jenny Girl....She's Beautiful!!
I LOVE the photos...especially the one with the sunglasses!Hahaaa....I think the pup is a bit nervous...Hahaaaa
Happy weekend Sweetie!
hughugs

September 2, 2011 | Unregistered CommenterDonna (Texas)

So glad to get to know your sweet baby girl better! The picture of her just after birth is so precious. They all are! Thank you for sharing her.

September 2, 2011 | Unregistered CommenterSydney

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