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Archive for the ‘Down Syndrome’ 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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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!

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(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):

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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…

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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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Look closely into the window of the school bus…

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and there you will see the eyes of hope in a special little boy on his way to his very first State Special Olympics.

See, you must have your head in clouds to hope, because hope means you have to aim high, stretching yourself to greater heights than you ever imagined.

We never can know what is possible unless we try and never give up – and trying starts with hope, and a belief in the impossible.

This is what this special little boy has taught me, a gift that he shares with everyone he meets.

Just thought I’d pass it along to you, dear readers – for him.

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Hey, God, thanks for giving us the impetus to aim high, for the flexibility to stretch ourselves beyond what we initially believed might be possible. Thanks for the motivation to try, for perseverance and belief in what seems out of reach or surreal.

Thank you, God, for hope in all things. For it is You who have set the bar, giving us that “upward mobility” that eggs us on to achieve greater things – without which we would stay stuck, unhappy, unfulfilled and void of greater potential.

Thanks for helping us run this race in the face of doubt, barriers, disabilities, hindrances and impossibilities. And thanks for getting us there, taking us higher, beyond our hopes and dreams even though we can’t always see what the finish line holds, because it seems so daunting and very far away.

Let us always trust You to carry us through to that finish line, where Your medal of validation awaits us, confirming that we are capable and worthy of the greater blessings You have in store for us…if we are faithful to hold on to hope, believe, keep trying and never give up!

Yes, this race is for YOU!

For more great windows of the world, click HERE.

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Marching with the band in the Christmas parade has been a lifelong dream of our child with Down syndrome. That is all he ever wanted to do.

Music has been his passion since he was in the womb (he would kick harder when his favorite songs were on). It was a music therapist who helped ease him out of a coma in the PICU after he flat-lined.

And now, in middle school, it is the promise of being able to go to band practice that keeps him focused on his studies in the morning.

And keeps him from shenanigans like running into the girls’ locker room when they’re changing.

Besides girls, he has taken a particular liking to all things percussion. When we first asked if he could march, the answer wasn’t no, but it wasn’t yes, either.

Would he do what he was supposed to do? Would he be able to make the three-mile trek along the parade route, orthopedic inserts and all? How many chaperones might he need? What if he got distracted and became bewildered, tried to run or plopped down on the pavement and refused to budge (as he is sometimes prone to do)?

Once we secured answers to all these questions, the answer was finally ‘yes.’ He was ecstatic and talked nothing but parade for the last month. He diligently practiced various instruments at home each night and faithfully counted out the rhythm of various Christmas songs.

We often overheard him in his room, pretending to be in band class, talking (as best his speech impediment allowed) to his imaginary band mates: “Ready? Okay…(tap tap tap tap) one, two, three, four…stop – try that again, this time, faster…”

But last week the band director’s pregnancy took a turn rendering her unable to lead the band in the parade – and the middle school band was removed from the parade lineup. We didn’t have the heart to tell our son – not yet.

On a whim, we emailed the high school music director who oversees our eldest son in the high school marching band. Explaining the situation, we asked if we might include him – we were already signed up to chaperone the high school band on the parade, anyway. The answer was YES!

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The percussionists readily took him under their wing and put him to work – here, warming up on the snare. She was teaching him both technique and rhythm while we waited for the parade to begin.

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Drumming up some fun on the quads. Somebody forgot the apparatus that holds the quads while marching, so the band director enlisted Daddy to make a run back to the high school right-quick to find it in the band room, then battle the traffic and barricades back in time to save the parade. Close call, but mission accomplished!

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Bass drums aren’t easy to pick up!

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Lined up and ready to roll…big brother was playing the baritone horn in front of the tubas, somewhere in the sea of Santa hats.

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…and baby brother was supposed to be throwing candy to the crowd as we passed, but I counted no fewer than 12 wrappers in the bottom of the Radio Flyer at the end of the night.

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Our ears are still ringing from being by the drum line. When we had to slow or pause on the route, I noticed it was impossible NOT to move your body to the beat – so we did some dancing in the street!

Fortunately, there is no picture of me wearing my reindeer headdress, although I was spotted and called out to by several parade-goers, some of whom were administrators where I work….not sure how that affects my chance at a promotion.

He got a tummy ache about halfway through and had to retire to the wagon, but he kept playing until the bitter end.

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He got a BIG surprise when Santa himself jumped off of the fire truck and came right over to give him a big hug – the jolly old guy wouldn’t stand still, but the joy he brought was immeasurable.

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And he was given a new pair of drumsticks!

Isn’t this what Christmas is all about?

Thanks, God, for the joy You brought to the world through Your Son, Jesus Christ. As we celebrate this time of His birth, we thank You for glimpses of that joy in the faces and lives of Your precious children. May we, as adults, ensure that our children know the gift of joy You have provided through Him. May all our hopes and dreams come true through Your perfect will.

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