![Hold Back the Dawn [DVD] Charles Boyer; Olivia de Havilland; Paulette Goddard](http://ecx.images-amazon.com/images/I/41AkExBJQsL._SL75_.jpg)
Melanie in so many words ... and pictures
Wednesday, August 31, 2011 at 12:44PM 
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
