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Archive for the ‘Disabilities’ Category

Magic came early this spring! 

My kiddo, who was supposedly doomed to a vegetative state until his predicted death by age 4, went to the Tim Tebow prom last month with a classy “typical” classmate in a hott pink dress, who donned him with a crown and made him king for the evening.

He turns 17 this April.

Security on the main floor was tight as a drum. We peacock-proud parents, along with well-wishers and assorted spectators, were relinquished to the balcony Atop the main floor of a local Episcopal reception hall balcony. 

Parents reconnected. Teens connected. Souls and dreams flourished…


Dear God, thank you that there is a place in Heaven and here on earth for everyone. 

Help us remember that regardless of health or illness, strength or infirmity, life or death, earth or Heaven, sane or insane, righteous or sinners, we belong to You. 

During this Lenten season, Lord, let us wrap our brains around Your concepts of letting go of convention and embracing what is different, foreign and changed.

Transform us, God, into what You would have us be for You, not for men or earth or the lives we know here on earth.

Shine Your mercy on us, Father, that we might slow Down and cherish every moment, with the faith of Your promises beyond.

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The path to Christmas at our house seemed a lot like the one for which the day itself celebrates.

This year has been a long, hard journey…only to get to the end to find no room at the inn, in many ways.

The year has been a story of disabilities, disasters and way too many losses….but also one of perseverance, sharpening and victories, often disguised as hardships. I am highly confident that 2017 will be a year of rebuilding and grace.

So, there weren’t as many gifts under the tree this year, and many of them would have blended in with the latest Fruit of the Loom commercial….which may sound bleak for American children in this day and age – at least at first glance.

But in our culture of entitlement, I think it was just what the children needed to learn some valuable character lessons. 

Less yields more appreciation and a deeper sense of valuing “Stuff.” Less is just what was needed to drive home some salient points we parents otherwise try to teach our children with varying degrees of success. 

I can safely say it is much harder to teach some of these lessons unless a child experiences the sting of disappointment, of going without. A little humility yields great things!

There were lessons this morning in climbing out of a pit, of garnering one’s creativity and ingenuity to generate solutions to get where you want to be, to realizing your dreams. To being the one to make your own dreams come true instead of relying upon others and the world to make it happen FOR you. 

Actually, kind of like the very premises our country was founded upon!

Instead of a spirit of downtrodden weakness, a prevailing spirit of hope, faith and love.

And it didn’t come in the form of an expensive gift, it was not proud, it did not boast. There were no clanging cymbals.

My friends, God was right when He said the greatest of these is LOVE. This gift sat in at the back of the tree in a little silver, unmarked box, having gone mostly unnoticed until this morning.

The very youngest child patiently waited until all the gifts had been opened and he quietly padded over to his mother, the one in the room whose name was not on any of the gifts (because it’s all about the kids, right?) and he handed her the plain  tin box and eagerly waited for her to open it. 

His light blue eyes danced with anticipation as she carefully opened it and joyously received the greatest gift of all:


And Merry Christmas with love to you all! 

May God bless you richly with His love…but don’t look for it at the 5 star resort in the top-floor suite. It can be found in a quiet valley of solitude, where things are simple and lowly, sweet and holy.

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Home is definitely where my heart is…and Local is my focal:

Polo At the Point Classic 2016

Downtown

Famous Southern writers get famous here…

Special Needs Softball – Run, Forrest, run!

The destination IS the journey!

Spectabulous sunsets at the pier…applause is the custom

Rose garden by the bay

Church while you kayak!

A place like no other…


Thank You, God, for the special places You give us to live, to visit and to enjoy. Thank You for our differences and all manner of various cultures and customs. And thank You for being in each and every one of them!

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I love this week’s Photo Challenge which is all about taking something and running with it – about going many steps beyond your wildest dreams.

Never believe that the impossible isn’t possible or that a dark and gloomy prognosis means the end of the track.

From a Pediatric Intensive Care Unit, 8 months old…told IF he lived, he would be in a vegetative state and die by age 4…

  
…to Special Olympics, 2015 – Kissing a pretty girl fifteen years later makes it well worth coming out of a coma and surviving!

 Believe in the extraordinary – faith, hope and love are the greatest of gifts.

Thanks, God, for second, third and fourth chances. And tenth and seventy-seventh chances. 

You know, God, sometimes I think that Your lessons about faith, hope and love are as much about our aspirations as they are a reminder of Your unwavering faith, hope and love for us. It IS a two-way street, isn’t it? 

That when our ordinary faith, hope and love stray, You – our Rock – never lose those three things for us, and it is Your extraordinary faith in us, Your hope in our return and Your eterrnal love for us draws us back and is what causes such rejoicing among the angels when we return.

Many happy and extraordinary returns!

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For this week’s  Weekly Photo Challenge, I offer the face of an angel with boundless joy:

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David, at Special Olympics, this past May.

Thank You, God, for untold joy, for unstoppable joy that springs from unspeakable grief. For spontaneous joy, for the unexpected, the unseekable that presents itself and makes life worth every hardship.

Thanks for the unending hope of joy, for using each of us to inspire one another to keep seeking You and the untold riches of joy You offer.

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A different take on “new” for this week’s Photo Challenge:

When you have dementia or Alzheimer’s, what’s old is brand new. Every day is a new day, every experience is brand new.

Most of us are inclined to feel pity or sadness for people who live out their last days with such a diagnosis, but really, you’d have to see the brand new joy it to believe it…

My mother with dementia became utterly enamored with the wind-up cymbal-clashing chimp she “gave” her six-year-old grandson this Christmas – the very gift she gave to me when I was three.

She had forgotten what joy such a toy brought, and when he opened it, she latched on to it, began to talk to it and babied it, wound it up multiple times and clapped with delight!

what's old is new

(take note of the fruitcake she was enjoying at the time, a gift her brother sent her…he sent the rest of us “mixed nuts.” We tried unsuccessfully not to laugh at the subliminal parallels…)

Meanwhile, our fourteen year old son with Down syndrome had talked for over a month about wanting nothing but a baby for Christmas. At first we thought he was bluffing or we were misunderstanding his convoluted speech, which is still at an infantile level.

We thought he was over the “baby” phase years ago. But he wasn’t kidding (here, his six-year-old brother helped him unwrap his gift):

joy

Again, what we thought was old or not age-appropriate, was brand new all over again – and brought new joys that we, in our worldly “wisdom,” never would have anticipated.

David was thrilled – and takes her everywhere he goes, is mindful to feed her when he eats, takes her to the potty when he goes, dresses her when he dresses, tucks her in when he is tucked in, and holds her hand together to pray when we pray. He makes for a very attentive daddy, despite his disabilities…

love

The lessons I learned from these who we might label as weak or incapable, were much larger than any lesson I myself could have taught.

The lessons being that

1.) It’s not up to us to judge what’s appropriate;

2.) You never know how something will affect or transform or touch another person; and

3.) What we consider old or outdated just may be the spark that someone else needs to embark on a brand new journey of joy.

Hey, God – thank You for an unimaginable 2014 and for the wonder that 2015 brings. Thank You for the blessings you brought, and for the unknown surprises You will bring us this year.

God, help us to have the courage to embrace things that are new – things that we didn’t see coming, things that may not match up to our idea of what’s right or appropriate or acceptable – help us to see that You operate out of the box more than any of us ever could.

Help us to be tolerant of new horizons, to be flexible and to face all things NEW without judgment, without fear and with curiosity and reverence, knowing that You just might be behind those things You have in store for us – that they are all part of the journey that hopefully brings us closer to You.

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Humanity …http://dailypost.wordpress.com/dp_photo_challenge/humanity/

Medical technology gives us more choices in creating and controlling our destiny and that of our offspring.

It is estimated that 92% of fetuses who test positive for signs of Down syndrome today are aborted.

When David was in utero, all the tests came out “false negative.” We had no reason to believe anything was abnormal. His birth was normal – he came skidding out in 45 minutes flat, weighing in at 10 lbs 6 oz.

But he wouldn’t nurse, and his blood coagulated quickly – he resisted life initially, so measures were taken to keep him alive. He got blood transfusions (GIVE BLOOD!) and was the biggest, giant baby in the NICU.

A couple weeks after his birth, he tested positive for Trisomy 21. Fragile, he contracted pneumonia and his lungs collapsed 75%. He was airlifted on a Mercy Flight and was not expected to live.

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I pumped milk for him to be fed through a tube down his nose and into his stomach for months, while we lived in a Ronald McDonald House.

In his coma, we sang to him and talked to him, trying to give him the best of his only days on this earth.

Some argue that this is a waste of human and social resources. Had the fetus (David) been tested with today’s technology, it (he) could have been caught and prevented, and the six-figure price tag for his hospital care (at the time) could have been saved.

This is not a new concept; history repeats itself over the generations, but usually only the newer generations have forgotten the atrocities of the older generations. And…one thing leads to another….

Technologically advanced eugenics is indeed alive and well in the world today, whether we prefer to notice or not.

The prognosis was, if he didn’t come home in a casket and came home in a car seat instead, he’d be in a vegetative state at best, and could possibly live to age four or five.

Once I relinquished him to God, whether it be on earth or in heaven, somehow his flat line began to take off and he lived…(the little dickens extubated himself when he came out of his coma…he had a will to live).

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“Mighty David” defied all odds and, just like you and I, went on to do great things.

Like walk and talk and tickle and play in the band and paddle board and know Santa and be featured in the National Down Syndrome Society and Little League….nosiree, no vegetative state for HIM!

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imageMeeting Santa Claus while marching with the high school band in the Christmas Parade last year (He’d really hoped to meet Philip Phillips):

(Can you say JOY?)

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Quality of Life: Priceless

(beating Mom at push-ups)

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Don’t judge: there were abortions and one live birth prior to David, and two live births and four miscarriages after David…it always works out just the way God intends, even if we think we’re in charge!

No judgment, only LOVE and FULFILLMENT!

We do what we believe we must do when we must do it. God does what is meant to be, regardless.

Thanks, God, for Your perfect will and guidance….for rainbows out of clouds, for strength in weakness, for thumbs up in the face of Downs, for David and children all around the world who beat the odds and magnify Your glory, and for always being in control no matter what.

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Thank You for being an Awesome God!

 

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