Tag Archives: Down’s Syndrome

Learning from Gracie as she contines to grow …

is an experience in humility.

She has Down’s Syndrome, but you wouldn’t know it by listening to or watching her.

She runs, plays, swing, argues, wrestles, loves, hugs, manipulates and somehow ends up being the center of attention wherever she goes simply because she has a larger than life personality.

She knows what she wants and how to get it.

Usually by putting her innocent-looking, pixie-faced, tinkerbell eyes on her Papaw.

He can deny her nothing.  He says he can, but he can’t.

Or maybe won’t is the better way to say it.

She has him wrapped as tight as Dick’s hatband around her little finger, her forefinger, her middle finger, her thumb.

He is wrapped.

Period.

Ice cream, Papaw.

Okay.

Pretzels, Papaw.

Okay.

Murder the neighbor and bury them in Louisa’s spring, Papaw.

Okay.

It is a joy to watch her as she learns to manipulate the ones she knows are easy marks.

I, on occasion, an am easy mark, but for the most part, she knows that Nini means business and expects her to act like a human child; but even I have my limitations when she flashes that smile and says “I love you, Nini”.

I am, after all,  human.

She is growing up so fast.

It seems like only moments ago that she was in the NICU with lines and tubes and a tiny body that looked as though it would break with a look and shatter with a touch.

But she passed the shatter stage a while back.

She is a pistol, is our Gracie, and as tough as nails.

She doesn’t take no for an answer, asks a million questions one after the other and could give Flash Gordon a run for his money when she feels like it.

I think we have all chased her (and lost) at some point, while she laughs and skips and eludes our efforts to catch her.

She is a bit like the gingerbread man.  Catch me if you can, she says, knowing we are too slow to be any real threat.

She went back to school this week and loved on all her classmates as though they had been cruelly separated for years.

I don’t know much about anything but I know this … a hug from Gracie can make the worst day, the most difficult moment, the hardest trial seem as nothing.

She has way about her.  A being, an aura, a spirit … call it what you will, but it is irresistible and it is life-altering.

She has a way of making you feel, at the moment, as though you are the most important thing in the world; and the ability to make you believe it unequivocally.

I cannot imagine, and will not imagine a world without Gracie for it would, without doubt, irrevocably break my spirit.

She is the epitome of sunshine.  I’m pretty sure when Jimmy Davis and Charles Mitchell wrote “you are my sunshine”, they did so because they had a premonition about Gracie.  God is cool that way.

She is a bright spot in the lives of everyone she come across.

It would be my great pleasure for all of my friends to meet her, to know her and to benefit greatly from one of her “I love you even if you are an idiot” hugs.

She doesn’t take into account how smart, how talented, how boring, how nerdy, how geeky, how crazy, how messed up, how depressed, how out of touch or how indifferent you are.

She changes lives, just by being, by smiling, by living.

A smile from Gracie, unless you are the devil  himself, will melt you like warm chocolate.

She is, unto herself, an entity.

There really is no way to avoid the beauty that enters your person when she hugs you tightly and puts her little face into your neck.

She is a gift from God.  A simple truth.

She sees life and people  in one dimension and that is unbiased love.  She doesn’t understand anything else (except the occasional temper tantrum that makes the Kraken look like a goldfish).

But we’ll save that tidbit for another day.

For now, by proxy, be encouraged by Gracie. She is a power to be reckoned with and it is wonderful to be a part of this precious child’s life.

“It’s Nini” she says, as she runs with her arms outstretched to me.  Every other thought in my head dissolves for it has no power against such beauty.

I am thankful for her.  I am grateful for her.  I am indebted to her.

May God continue to bless our sweet Gracie.

She is beautiful and she makes everything and everyone around her beautiful as well.

like a mermaid, she take to the ocean ... free and beautiful

like a mermaid, she takes to the ocean … free and beautiful

no matter where she goes, she will always be her daddy’s girl

Sometimes, only a papaw will do …

An extra chromosome …

changed my life, as well as the lives of many, many others.  Five years ago, my youngest niece was born with Down’s Syndrome.  She was a tiny, fragile thing who looked as though she would break with the slightest touch.  Her fragility, however, was short lived.  Before we knew what hit us, Gracie was not only growing and thriving, but had managed to wrap everyone who met her around her sweet little finger.  The first time she smiled at me, tears filled my eyes.  The first time she called me Nini, I cried.  The first time she put those precious little arms around my neck and lay her head on my shoulder, I lost it completely.

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The fact that Gracie has Down’s Syndrome is irrelevant to everyone who meets her.  Her charismatic personality and over-the-top laughter make it impossible to see anything but the beautiful spirit she exudes.  She laughs.  She loves.  She thrives.  She plays.  She cries.  She gets mad.  She is everything she’s supposed to be, but because of that little, bitty, extra chromosome, she is so much more.

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Just by being herself, she is an encourager.  It is simply not possible to be in Gracie’s presence and not feel a sense of love and acceptance.  It was evident from the start that she was one of God’s special gifts.  She is blessed in a way that makes her appear larger than life.  Her very being commands attention without ever saying a word and people migrate to her, surround her, find solace in her.  She is, without doubt or reservation, a formidable weapon against everything negative.

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She possesses an innate ability to turn lives around with her genuineness.    She is guileless in everything she does, having no agenda or premeditation.  Her sense of self is unrivaled and her confidence unwavering;  that, in itself, is a testament to the strength and beauty that is part of what makes her who she is.  There are many things I would change in my life were I given the chance to do so.  Gracie is not one of them.

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March 21 is Down’s Syndrome Awareness Day and the purpose of this post is as much to help raise awareness as it is to sing the song of Gracie.    I am more than I was before she came into my life, but not nearly as much as I will be in another five years.  My life changed, for the better, the day she was born and I will never be the same.

To read Watching Gracie Grow, click on the photo below:

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As our Gracie grows …

I find that watching her is one of my most wonderful blessings.  The years seem to have flown by and now, she is just a couple of months shy of her fifth birthday.  She can do whatever she tries to do, follows her sister wherever she goes and can hold her own (especially in the ones she starts), in a good old fashioned wrestle.  She has learned that pouting works with everyone but me and doesn’t even bother anymore.  She just points her finger at me and says things that I’m almost glad I can’t understand.  She has her own mind, her own will and her own ambitions.  She has her own way of doing things and is pretty set on doing it HER way.  Having to share everything and everyone with a sister who is cut from the same cloth makes like interesting, to say the least.

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When Gracie first came into the world, she was early.  Very early.  And she was almost immediately diagnosed with Down’s Syndrome.  She won our hearts so quickly, we didn’t really have a chance to absorb the fact that she had Down’s.  We prayed and God answered; she would touch our lives in a way that none of us, not even us optimists, could ever imagine.

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While she says many things that are amusing, there are two phrases she says that melt me like warm chocolate.  “Hi Nini” and “Love you, too, Nini”.  I’ve never once called when Gracie was around that she didn’t pick up the phone and say “Hi Nini”, whether she knew it was me or not.  I love that.  It makes me feel good inside to know that I am part of this beautiful child’s life.  I’m not the only one, though.  Ask anyone who has had the pleasure of being around her; she has a gift.  A gift of encouragement and light.  She never fails to bring joy to anyone who sees her.  It is rather awesome to watch.  She has a special light around her; one that makes everyone want to be near her … makes me want to be near her.  A light that makes even the worst of days insignificant when she puts those little arms around my neck.

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She has come a long way, our Gracie.  From barely hanging on to thriving and living in a world she feels safe in and isn’t afraid to explore.  She reminds me what I want to be when I grow up.  Yes, she is truly a blessing in my life, but by far, not the only one; not by a longshot. (If you haven’t read Watching Gracie Grow, read it here http://wp.me/p1CqmN-m )

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Psalms 100 ~  1 Make a joyful noise to the Lord; all ye lands.  2 Serve the Lord with gladness; come before His presence with singing.  3 Know ye that the Lord he is God: it is he that hath made us, and not we ourselves; we are his people, and the sheep of his pasture.  4 Enter into his gates with thanksgiving, and into his courts with praise: be thankful unto him, and bless his name.  5 For the Lord is good; his mercy is everlasting; and his truth endureth to all generations.

It isn’t an issue …

my niece’s Down’s Syndrome, that is; as a matter of fact, until someone brings it up, I forget about it.  I thought about it quite a bit this weekend, though.  It was the annual Buddy Walk, a walk sponsored by the National Down’s Syndrome Society.  There is a chapter of FRIENDS (Friends Reaching and Inspiring Neighbors about Down’s Syndrome) that services Southwest VA and Northeast TN.  It is through them that the Buddy Walk takes place each year.  But, I digress.

I saw many children there, many who were the same age as Grace, some older others younger.  I noticed many disabilities that I never give a second thought to  because I haven’t had to confront them with Gracie.  She does everything her sister does, sometimes even better, giving the impression that there is no disability.  While surrounded by the children and their parents, I had to take a moment and wonder what they go through on a daily basis just to insure that their child can have a routine of sorts.  Our biggest challenge is keeping up with Gracie as she is as fast as lightning and can be gone before you can say “Where’s Gracie?”.  Maybe we should dress her in a red and white striped shirt and make a book about her.

At one point, I took her with me and let her jump in one of the air-filled things.  What she really wanted to do was go down a slide that you had to climb up via little “foot pockets” to get to, kind of like the rock-climbing attractions at some malls.  I made her wait so her daddy could with her.

As it turned out, she didn’t need anybody to go with her.  She climbed up that thing like a monkey and never looked back, except when I was taking her picture because she is, irregardless of everything else, a ham.  I was so proud of her and a bit disappointed in myself for not having enough confidence in her abilities even though I see them nearly every day.

There are many lessons I can learn from Gracie.  I can learn to not know the meaning of can’t.  I can learn that just because something is hard has no bearing on whether I can do it or not and that unless I try, I will never know.  I can learn unconditional love that is blind to looks, color, demeanor, personality, social status, intelligence and the myriad of things that I roll my eyes at.  She doesn’t see with her eyes, but with her heart.  I think we could all use a bit more of that.

I thank God for both of my nieces and would lay down my life for either of them, but I thank Him especially for blessing our Gracie, for healing the hole in her heart, for fixing her kidney and for making her a grand example to all of us.  God Bless you Gracie.  You make me want to be a better person.

Romans 11:33 ~ O the depth of the riches both of the wisdom and knowledge of God! how unsearchable are his judgments, and his ways past finding out!

Watching Gracie Grow

Down’s Syndrome.  I had heard of it, seen people who had it and been around other folks who had children or grandchildren with Down’s but on a personal level, had no real understanding of it.  At least not until the birth of my youngest niece, Gracie.  Gracie came into the world nearly eight weeks early and spent the first two months of her life in the Neonatal Intensive Care Unit (NIC-U).  She had tubes in her nose and mouth, IV lines in her veins and spent much of her time in a special incubator that kept her body temperature regulated.  There was great excitement at each wet or dirty diaper and each dropper of formula that she was able to swallow.  The doctors said over and over to not get our hopes up, that there could be many things wrong and that she would likely be brain damaged, a near-vegetable.  They told of the horrors of holes in her heart and dysfunctional kidneys, blindness and the inability to walk, talk or do many of the  activities that other children do.  Their faces serious and their prognosis dire, they didn’t know what we did.

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That God was already working in that little life and had been even before she was conceived.  They didn’t know that this child was a miracle in the making, a blessing that would far exceed any of our imaginings.  As her little body rested in the incubator, her lungs strengthening with each breath, her muscles growing with each kick, her eyes, unfocused and blurry beginning to gaze directly into ours, we prayed.  Our friends and families prayed, our sister churches prayed and an ever-faithful, merciful and loving God gathered the prayers together and let His blessings flow, falling like the gentle rains of springtime.  When Gracie came home from the hospital, the nurses rejoiced that she was well enough to leave and cried that she would no longer be a part of their everyday lives.  At first, we handled her like a fragile china doll, afraid that the slightest touch would break her.  So tiny was she that our hands could cover her entire body.  But she didn’t stay tiny for long.  She grew and she thrived, she looked and she learned and she brought joy into all of our hearts that we had never known before.  With each milestone, she would smile and clap, then watch and wait for her fans to clap with her.    Watching Gracie grow is one of our most cherished blessings and I, for one, am grateful that this beautiful child graced our lives.  Not surprisingly, she has made her way on to numerous greeting cards, most recently, a Nurses Day card for Oncology Nurses.   Her love, light and laughter is contagious and I hope everyone catches a little bit of it.  I pray that God will continue to bless our sweet Gracie-Bell all of the days of her life.

a little pray-er goes a long way