Category Archives: Down’s Syndrome

Standing outside in the snow …

is one of the most freeing of experiences.

I liken it to standing in the midst of a summer rain while nature falls all around, touching, caressing, permeating my very being and making me one with its magnificence.

How wonderful it is to feel the snowflakes, each different and individual, falling on my skin, touching my lips, landing on my lashes?

The peace of the falling snow is, in itself, a wondrous thing, but to feel it on my skin takes me to a place where my dreams live.

I suppose, to some, it will sound irrational to hear that someone purposely stands outside while the snow or rain falls, or while the wind whips through the air.

It shouldn’t.

It should, instead, be an invitation to feel nature in real time, to partake in her joy as she showers the earth with beauty and marvelous things.

Bask in the magnificence of nature … stand in the rain, stand in the snow, feel the wind on your face.

Find peace in the solitude and realize who you are at your core.

Who you are meant to be.

What you are meant to be.

Listen to the voice of the earth for it is the footstool of Jesus.

Find solace.

Find joy.

Find what you didn’t even realize you were looking for.

Simply be still and let all that creation has to offer overcome you.

It will, without doubt or reservation, change your world for the better.

Listen to the wind, feel the sunshine, bask in the light of the moon, hear the pounding of the surf …

Find sustenance and sublimity in the beauty that surrounds you.

I promise you won’t be sorry.

But don’t simply take my word for it … immerse yourself and find, for yourself, the wonder of nature.

The joy of snowfallSeriously?

A winter wonderlandsnowfall

Finding joy in every momentkisses blown from an angel

Advertisements

If I’m not me …

then myself, as I know me to be, will cease to exist.

It has been a trying few days … ok, truth be known a trying couple of weeks, but the past few days have been egregiously difficult.

For those who know me personally, you are used to the barrage of chattering that has little to do with anything and everything to do with nothing.  It is part of what makes me who I am.

But sometimes, there is a hitch in the rhythm that brings everything to a complete and utter halt.

That recently happened.  I don’t intend to dwell on it for as far as I am concerned, it is in the past, it is buried and I am well on my way to greener pastures.

It was Erma Bombeck who so aptly said “the grass is always greener over the septic tank” … well, she wasn’t just whistling dixie.

It is funny how life throws curve balls at us and we have two choices … either dodge them or get hit.

I got hit this time, but it will, without doubt, make me more able and prepared to dodge in the future.

I don’t do “woe is me” very well.

I am an optimist.

A follower of Christ.

A positive thinker.

A Sagittarius.

A sometimes bordering-on-crazy person.

All of these things work in tandem to help me to see the big picture.

I don’t even pretend to be perfect, and if truth be told, walk with distressing regularity, the fine line between sanity and oblivion.

But I know myself and my moods and have, over time, learned to live with them.

All of them.

I say curse words when they are warranted, drink Corona when I feel like it and roll my eyes when there doesn’t seem to be any other option.

I don’t hold these things against myself and if others do, that, in my opinion, is their problem.

I have found myself in the past few days facing demons and obstacles that, if given the rest of my life, I would never have dreamed such happenings would come to be.

But life happens as it happens.  It is the same for all of us.

No part of the time we are given is perfect.

Well, that isn’t exactly true, as I can, with perfect clarity, recall a few perfect moments … but for the most part, we are all on a deal-with-it-as-it-comes basis and we either deal with it or end up institutionalized.

Since I am still a free woman, I suspect that I have, at least up until now, dealt with it.

I don’t discount the things that hurt me for they help me grow, but I do learn from them.

If one doesn’t learn from the things that set them back a bit, then they are wasting their time living.

Life is for living; not for reliving failures, hurt or humiliation.

Living.

Learning.

Thriving.

That is how I roll and it is how I will continue to roll.

Wishing everyone who reads this to look inside themselves and decide that life, whatever it may bring, is worth living and worth living well.

Until next time, be well, my friends, be well.

only one of hundreds of my favorite things about West Side Market in Cleveland, OH

only one of hundreds of my favorite things about West Side Market in Cleveland, OH

Carl Tanner performing at Toy F. Reid Center, courtesy of Symphony of the Mountains

Carl Tanner performing at Toy F. Reid Center, a concert made possible by Symphony of the Mountains

The Cleveland Orchestra performing Mahler's First at Severence Hall

The Cleveland Orchestra performing Mahler’s First at Severence Hall

My niece, Gracie, living life and having a grand time doing it.

My niece, Gracie, living life and having a grand time doing it.

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.

tattoo_girlsEasterpics-163

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.

CCPBC_creekbank-11-2

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.

thegirls_easter-155

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.

newdroid_8mp-3

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:

cabin_09252011-26

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.

sistersrunning2012

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.

niecesinthesand_2009

gracy_buddywalk2012

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.

gracielaughing_2011

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 )

mygirls_beach2012

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.

On the Eve of New Year’s Eve …

I have found myself looking back over memories of the past year.  While some of the looking has been within the vast memories of my mind and heart, most of the thoughts have been invoked from the photographs that depict the life I have lived.  While I appear in but a few of the photographs (part of being the photographer), they depict what I have found to be inspiring, beautiful, profound, enlightening and without doubt, some of the most exceptional moments I could ask for.

I have learned that it doesn’t matter who you are or what you know (or think you know), there is more to learn.   People are complex and, at the same time, simple and beautiful  My niece Gracie has Down’s Syndrome, but I’ve learned from her that the things that make people different aren’t an anomaly or defect, but something to be praised and honored.  She reminds me that, if I get lonely, I only have to look into myself to find company.  She only sees the beauty, the positive and she never fails to offer a smile.  She reminds me to smile, even when I don’t feel like smiling.

spring_042012-29

I have learned that I don’t have be alone when I want to go to the hard places; that there are people willing to go with me, not because they want to go, but because they know I want to.  A long and arduous trek to the White Rocks this Autumn brought this thought process to fruition.  My sister knew how much I wanted to go and because she didn’t want me to go alone, she, along with my niece, Sophie and cousin, Emily, made the journey.  It was exhausting and breathtaking and full of fellowship and fun.  It reminded me that there are people in my life who care about the things that are important to me and want to help me succeed in finding them.  These are memories that, as long as my mind lasts, will stay with me, for they are precious beyond words that can describe them.

whiterocks_trailshoot-146

I learned, through my niece Sophie, what it means to be courageous and not to balk when an obstacle presents itself in my path.  She is fearless and has a sense of adventure that makes me proud.  I’d like to think that, somewhere in her heart, she has a tiny bit of me and that between the two of us, we can see and experience everything.  She, while sometimes a challenge, is an inspiration to me and a constant comfort.  She is beautiful and strong and reminds me that life, even when it seems to be mediocre, is an incredible journey that should be loved, for the moment, at the moment; the rest will fall into place when it should.

whiterocks_trailshoot-104

flowersfornini

I have been reminded that music has no boundaries when it comes to what moves the soul.  I have been introduced to new music that has touched my heart in such a way, that it will never, ever be the same.  Friends come into my life and then fade away, but the mark they leave is everlasting and causes a chain reaction of the thirst for knowledge of music in its purest form  and the peace that it brings to my mind.  For those who have influenced me, I am thankful, for there is much I would have gone my whole life without knowing had there not been special ones to show me that there was more than what I thought possible.  Music always has and will continue to be a balm to my spirit.  I am grateful for the musicians that have graced my life and made it, because of their presence in it, richer and more beautiful than I could imagine.

tay_music

clarinetplayer_friend

powelvalley_windsofmtnempire-301

I have been reminded just how wonderful it is to have the love of a beloved pet.  One who will let  me hold them way too tightly as I cry into their soft fur.  One who knew all of my secrets and then took them to heaven with them, for I cannot imagine that these sweet animals that stole my heart could be anywhere other than in Heaven.  They were my friends, my confidants and my loved ones.  As I think of them now, tears run down my face, for I miss them terribly.   They were the best of me.  The purest of me.  And the most loyal of any friend I have ever known.  They were an extension of myself and brought me great joy, teaching me even as they lived, what it meant to be a friend.  I have learned so much from them and thankful to have had them, for but a moment, it seems, in my life.

thegirls_easter-36-2 GMK12545

stuff

I’ve been reminded that sometimes, something as simple as a ride on a tire swing can bring joy unspeakable.  Through time and space, I was transported to my childhood and immersed in the beauty of the memories that bring me happiness.  There is nothing like being reminded of happier times to bring a smile and moment of happiness to my heart.  I am thankful that the little ones that I am blessed to be a part of their lives, who remind me what it was like to be a child, to be carefree and to have no worries other than when I get to swing again.  My blessings continue to mount as I reminisce over the past year.

sophieswings

My parents, whom I am blessed to still have in my life, have been a profound influence on me. The took me to church when I was but a babe and, while there were times I didn’t want to be there, it all came full circle when I came to the point when I wanted to give my life to Christ.  They encouraged me when I was down, supported me when I was an embarrassment to them and loved me when I was, as I know there were times when I was, unlovable.  I owe so much to them.  My parents.  My biggest fans.  My rocks.

parents

I am reminded of those who have gone to be with God, who will grace this life I live no longer, other than in memory, and am not ashamed at the falling of the tears at there absence.  I am richer for those I have known, more blessed for the ones that have graced my life and more fulfilled because some of the most wonderful people I have ever known have passed through my life.  It has, while moments of sadness would say otherwise, been an incredible year of learning and discovery.  I am blessed beyond what I deserve and am thankful for every experience.  Not all of them have been good, but through each one, I have grown a bit, both spiritually and in the human factor.  I have no regrets.  I have no wishes for do-overs.  While there are those that have left a lasting impression on my life, be they alive or dead, I am grateful.  Each experience has brought me closer to that which is written that I should accomplish.  I am thankful.  I am grateful.  I am in awe of my Awesome God.

familyreunion2011_sat-10

spiritofjim

Through it all, there is joy unspeakable in the beauty that my Heavenly Father reveals to me, through His astounding beauty and wonderful works.  I am thankful for all that I have learned this year and anxiously await what He has in store for the next.  God Bless my friends, followers, family and everyone who feels that their life has, for one reason or another, been in vain.  Know that you are important to so many and that without your influence, things, at least for me, would have much less wonderful.

home

beach_birds-158-2

droid_5_2011 2119

For each moment, each experience, each happiness, each sorrow, each disappointment, each joy, each heartbreak, each smile, each tear, each lesson … I am grateful.  I can  only hope that the next year will bring as much knowledge, love and friendship as this one.  I am grateful.  More than words can say, even through the hard times, which have been many, I am, thankful and optimistic.  That is my nature.  I am a Christian and a Sagittarius … What choice do I have, after all?

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.

gracie smiles

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