Remembering Sweet Sophie

Our local Down Syndrome family has suffered a tragic loss.
I do not even know where to begin.  There are just no words.  My heart is breaking for dear friends who had to say goodbye to their precious child the other day.  A young, full of promise and hope, life taken too soon, it just doesn't make sense.  The amount of grief they must be feeling is absolutely immeasurable, I simply can not fathom the pain.  I just can not stop crying as thoughts of this sweet baby girl are on my mind constantly - oh the sheer devastation her mother and father must be feeling. 

I have enjoyed getting to know Stephanie this past year.  She and sweet Sophie were regular attenders of our DS Super Mom's Coffees.  Her presence was heart-warming and comforting, as well as refreshing and insightful.  She works in the medical field and was able to provide our group with a vast array of knowledge as well as support.  AS difficult as I'm sure it may be for her, I hope she knows she will ALWAYS be in our "family", and she is ALWAYS welcome at ANY of our gatherings and events.  She told me the other day, that she will always be a momma to a Down Syndrome baby.  You don't just lose that kind of passion.  She has forged a strong connection and has a loving heart towards this Down Syndrome community, has adapted to this "way of life" and upon learning of Sophie's diagnosis has fully embraced this new journey.

We have not seen the last of Stephanie.  All us mom's have coordinated a meal-train and are taking meals to her home over the course of the next few months.  Not that it will make too large of an impact, but I hope it does help her feel less alone and allow her to know that she is thought of always and prayed for regularly.  Both her and her husband are from out east (her family is in Washington DC & his is in Pittsburg, PA, that distance alone has got to be hard). May she find even an ounce comfort and solace as days go by.

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Sweet Sophie Analie Bunt, born March 7th 2011, was just a few weeks shy of her 1st Birthday. 

how does one NOT fall instantly in love with that face??

She passed away unexpectedly in her sleep, likely due to complications from RSV.
Her father, Christopher is a physician with the US Air Force and was actually deployed to Afghanistan at this time.  Upon hearing the news (can't even imagine), he was aboard a plane and immediately reconnected with his family.
As all her loved ones (both Grandma's, both Grandpa's, Stephanie, Chris and Chris' brother) SOO ELOQUENTLY shared at her memorial service, she was a happy, beautiful and amazing blessing to them all.  Her smile could light up any room.  Between the heartfelt and highly emotional speeches and scrapbook video, there was most certainly not a dry eye in the house.  Her big brother (4 yr old) Brayden was especially fond of his baby sister, his mom described how he loved her as though SHE WERE HIS.  His love for her was truly unconditional. 

Below is a touching tribute written by Sophie's family:

Our Adored Sophie
Sophie Analie Bunt arrived into our lives on March 7th, 2011 at a healthy 7lbs 6oz and 20 &1/2 inches long.  She did not arrive in the package we were expecting but rather came as a beautiful gift tied with an extra chromosome.  Although we did not know it then, we were immediately graced with all the love, joy and happiness that she gave us each and every day of her exceedingly short life.
Sophie was the most beautiful, sweet, cuddly and loving baby that we could ever have hoped for.  She was always happy and she smiled with her whole face bringing joy to all those blessed with her presence.  Sophie loved playing peek-a-boo, cackling at our dog, eating, wiggling her whole body when she was excited, and most of all, her big brother, Brayden.
Sophie taught us more in her short time than anyone could have taught us in a lifetime. 

Some were lessons in the little things, which brought unbelievable laughter and joy:

• If you are going to smile, always use your whole face.
• Tutus are definitely food.
• If you are happy, wiggle your whole body.
• Bath time is always for splashing.
• Sometimes hair just doesn't lay flat
• If you can't find your spoon, it's probably on your head.
• If you grab it, never let it go.
• Be extra happy always

And some were monumental:

• Love conquers all and transcends all boundaries
• Perfection comes in all packages
• Everyone loves a smile.
• Happiness is a journey not a destination

Sophie is and always will be adored by her family, especially her big brother, friends, teachers and all that were blessed with her smile.  We are devastated by her loss and miss her with every breath we take.  We will forever cherish the short time we were graced with her presence in our lives and the happiness and love she brought will forever live in our hearts. 

Love, Stephanie, Chris and Brayden

This page was framed and shared at Sophie's memorial service. It was taken from our Down Syndrome Mom's Scrapbook.  Each of us mommas created a special page representing our own families and I am glad that Stephanie made one and shared it with us - she now owns the "original", but we'll have a copy made to take it's place. 

Sophie was and IS a loving member of our "group", she will always have a page in our scrapbook and has made a lasting impression in ALL our hearts.

I know that words are unable to provide adequate comfort.  But perhaps the sharing of a precious life through stories and photos (to keep her spirit alive) can aid in healing and allow for the forever remembrance of an angel who we were blessed to know.  If even for a little while...

Memorials can be made in Sophie's memory to the National Down Syndrome Society www.ndss.org

Our Special Olympics NE "Athlete of the Week"!

Oh my goodness.  I can't even begin to describe how thrilled Macy is to have achieved this distinct honor.  Our little Miss is being featured as Special Olympics Athlete of the Week.  I have been told she is the youngest "AOTW" so far.  :-)
here's a link to check her out

Okay...so perhaps it's not Macy, rather, me who's most excited. I think I may be guilty of "living vicariously" through my daughter...just a teeny bit.  I mean seriously!   How many of you (certainly not me) can say they were honored as athlete of a statewide "anything"...let alone at the ripe old age of TWO.  This girl is nothing short of amazing.  Her sweet smile, fierce determination, go-getter attitude and winning spirit is contagious!  Can't we all learn just a little something through her.  Go Macy GO!
It's true she has not worked as hard or has accomplished near as much as the amazing athletes featured before her (Jack, David, Jason, John, Kristina, Alan, etc...all have long lists of events and their "Gold Medal Moments" are a bit more impressive).  Macy, with good reason, is humble, but still has much to be proud of I'd say (okay, I'm her mom, I have to say that don't I?).  hehe 
Her "Profile" above (in case it's difficult to make out) I reads:

Name: Macy Harnisch
Age: 2
Hometown: Elkhorn
SONE Program: Macy is involved in our Young Athletes Program
Years with SONE: This is her first year!
Gold Medal Moment: Macy really enjoys participating in the Special Olympics “Young Athletes Program” over at Elite Cheer. She has been going since she turned two, so it’s been a few months now! Her favorite things at YAP are the rings, hoops, cones, mats, and of course the LARGE wall size mirror that she can watch herself in. She especially loves making those PT students chase after her as she runs from obstacle to obstacle. Our girl is so full of energy and excited to try out every new thing. This is why I am so encouraged by Special Olympics. I know that because of the large variety of opportunities that exist through SONE, and the many volunteers who give so much of their time, the sky’s the limit for Macy and all her friends! I am excited to see what’s in store for her. Thanks Special Olympics Nebraska for all you do! It’s genuinely appreciated.

I would be lying if I didn't say that I'd be a little disappointment if she did not choose to play sports when she gets older...Yes, we are going to encourage her to try everything and allow her the opportunity to decide what her strengths are and determine where her passions lie.  Whether she's an artist, a musician,  dancer, an athlete, a scholar, whatever she chooses, we'll support her and CHEER HER ON.
But, I LOVED sports - sports were a HUGE part of my upbringing.  I lived and breathed sports as a young girl (ehem, TOM -BOY) growing up.  And I genuinely believe that participating in organized athletic programs, especially Special Olympics, builds character, molds a well rounded, healthy, physically fit, disciplined and respectful individual.  The simple act of being included on a team encourages confidence and empowers people to be the BEST they can be!  Can help build up self-esteem and motivate children to excel academically as well as improve social skills.
The list goes on and on really.  But, I think you get the picture, so I'll stop there.

And let me add, that on the very night Macy was born. Several hours after learning of Macy's Down Syndrome Diagnosis...It was cold, dark, quiet, all our guests were gone.  Joe and I trembled.  We were broken.  We were sad, but mostly confused and worried.  But I must say that one thing that brought a glimmer of hope and anticipation and perhaps provided me a sense of familiarity (of a world I knew NOTHING about), something I could grasp, understand and actually relate to was Special Olympics.  I was not 100% certain just yet what this extra chromosome meant for our sweet new angel, but I did wonder (didn't say it out loud, but did think) right then and there..."does this mean that some day she could be a Special Olympian?"  "WOW".  The idea intrigued me.  It did bring a smile to my face, a happy tear to me eye and even for that split second a sense of excited anticipation of what was to come for our sweet girl.  Everything else, (the science behind it all, the possible medical issues, physical and intellectual disability part) was foreign to me.  But this?  I got.

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I want to leave you with a special poem from Macy's Grandpa Lee.
Apparently the other day Macy was telling him all about how she was going to be in the Special Olympics.  And what she thought about this BIG DEAL...

Macy's poem (via my dear dad) is entitled:

Special Olympian
I AM a Special Olympian
you MIGHT SEE me limp in the long jump
But I WILL SHOW you I can fly
Some may see me as a bird with a broken wing
which is NO big deal toME
Because I AM a Special Olympian
Which IS a BIG deal to BE


I AM a Special Olympian
You MIGHT not stopwatch my long run
But I WILL run the race
Some may see me as a racehorse with a hoof crack
which is NO big deal to ME
Because I AM a Special Olympian
Which IS a BIG deal to BE


I AM a Special Olympian 
You MIGHT see me kick some hurdles
But I WILL work my way over, under, around and through
Some think I hurdle like a NINJA on a bad hair day
which is NO big deal to ME
Because I AM a special Olympian
Which IS a BIG deal to BE


I LOVE to kick hurdle @$$...and leave behind of pile of splinters


Fiercely yours,
Macy (aka Sweetie Pie)


P.S.  Instead of shotput throwing I wish they had a kiss blowing 
I can throw those things half way around the world
I would be SOOOO Gold Medal in that event.

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Thanks Dad (and Macy)  I Love it!!!

The Polar Plunge!

She did it.  Aunt Keri actually took the plunge!  Today was amazing.  Clear blue skies set the scene.  Sure, it was cold, but was an overall clear and gorgeous February day - what more could you ask for?  As we arrived at Lake Cunningham we were shocked at the amount of vehicles.  Cars upon cars lined miles of hilly winding roads that circled the iced-over lake.  THERE WAS NO WHERE LEFT FOR US TO PARK!  This, of course, is not necessarily a terrible problem to have when arriving at a charity/fundraising event.  Afterall, the most important thing is for people to show up.  AND SHOW UP THEY DID!  Wowza! 
Special Olympics NE did this one up big  :)
I got choked up at the thought of hundreds of people showing up to support this awesome cause.  Little did I know at that point that there were more like thousands of people just around the bend.

The 2012 Polar Plunge was a HUGE success and very well attended.  Over 600 people jumped in the frigid water.  Thousands of spectators served as "Fans in the Stands".  This honestly leaves me at a loss for words.  Not only did people show up, but their money talked as well.  An astounding $96,760 was confirmed at 12noon...but this total continues to climb with donations still coming in.
Go Nebraska GO!
My sister Keri exceeded her goal by over 135%, raising over $800.  Her US BANK team as a whole collected an impressive $7,000+.  Her teammate & coworker, Joe Sullivan was the OVERALL LEAD fundraiser for the 2012 SONE Polar Plunge event, raising a rockstar amount of $3,920.  Wow.  Way to go Joe!!
Joe also sits on the board for Special Olympics Nebraska.  He clearly has a passion for this organization and the people it helps.  He said it best on his "firstgiving" fundraising page (so I hope he doesn't mind if I share it with you here)    

 In Joe's words:

"I will be taking a swim in Lake Cunningham on February 18 to raise money for Special Olympics in Nebraska.  Why?  Because Special Olympics athletes are awesome!  Despite intellectual and physical setbacks they show great resolve and a fighting spirit that I am jealous of!  Through Special Olympics programs, athletes build self confidence and character, improve physical fitness, receive nutritional assistance and health screenings, and build life long friendships.  The programs Special Olympics offers unify individuals with intellectual disabilities with classmates, friends, families and communities and show us the strengths they have to offer.  Special Olympics empowers its athletes to reach their full potential and show their many gifts, not just in sporting competitions but in their home, school, work, and community.
So it's 55 degrees out as I type this which makes this not exactly "Polar." Temperatures should hopefully drop by the plunge which is February 18.  If I hit my $3,000 goal I promise to spice things up with some water aerobics and/or synchronized swim routines.  I will be in costume along with the rest of the plunge team.  The costumes are a closely guarded secret but you might expect a turn buckle or a figure four leg lock in the mix.
Thanks to all for checking this out and I really appreciate your support."

Thanks Gramma for taking our pic  :-)

Macy found, who she THINKS is her Aunt Keri

"Keri?  That is you right?"

"Yep, momma, that's her in there all right"  "told ya so".

Macy checks out the rest of Keri's team.  Here she meets her friend Joe for the first time.

The US Bank Polar Plunge team (minus a few) with MACY!

She thought they were all pretty cool!

The Yutan cold water rescue team waiting for the action to begin...brrrr.

It might be a while, so they appear to be taking a "rest?"

Grandpa Lee somehow manages to finagle himself a rockstar seat.  right up near the front!

A very newsworthy event indeed!  Gonna have to watch the KETV Ch. 7 News this evening :-)

Here was the first brave plunger

Here goes Keri's team.  Headed towards the water, the crowd cheers them on as they go down the runway.

Submerging their bodies into SUB-ZERO temps.  OUCH!

That's gotta sting just a little.

They seem to be having a good enough time as they seemed to hang out and party there for a brief moment.

I later learned that they, in fact, were not hanging out in the chin-deep water that long by choice...their capes proved to be hazardous and worked against them...As they tugged on them and actually pulled them further out almost under the ice.  yikes!  Keri lost her footing and needed some assistance on the way back up.  hehe

It's difficult to describe Keri's exact expression here, but the terms, joy, pleasure or bliss most certainly do NOT come to mind.  ha!

She managed to hear my cheers amidst the crowd and threw me a valiant wave.  atta girl  :-)

Macy gives her a high-five a few minutes later...she wouldn't let her hold her until she got all dried off.  hehe

Mom  & Keri

I snuck some pics of Grandma & Macy hanging out by the lake.

aaaaawwwwww.

Macy gives such sweet, soft kisses these days.

I handed the camera to my mom, to try to get a couple fun shots myself...love her "framing" job.  Mom, seriously, were you even looking through the lens?  hehe

I cropped the rest of them to center them a bit more appropriately!  Macy was very tired by this point in the morning.

she was not "cooperating" and just wanted to snuggle.  :(  figures.

oh, whataface!  fine. We can go now.

But first you have to pose for a quick pic with Keri, Lyndsey & Cena,  All three of these lovely ladies donned your photo on their fundraising pages.  :-)  how sweet!

Macy says cheese.  And puts her finger up..."just one momma"!

"did ya get it yet?"

oh and before we leave, you HAVE to pose by the POLAR BEAR.  Just something you're supposed to do right? 

Now we need to work our way back through the crowd to retrieve your Grandpa who is still enjoying his front row seat to the action.

He got some great shots & lots of good video...of which I still need to weed through - I'll share those in a later post.

He wants to bring Macy down to his vantage point...sorry girl. looks like we're not leaving just yet afterall!

I love watching him watch her watch the action.

What a smiley.cute.hair.in.the.face.cold.mess she is right about now.  hehe

askin' Aunt Keri all about it!

As we were leaving I ran into my friend Julie, who was at that VERY moment taking the plunge.  That's her and her daughter in the green.  :-)   She has a little guy named Henry, who also has Down Syndrome.

The girl in the pink running with them is four and was said to be the youngest plunger.  wow!  That's crazy...but as you can see, she had a good time. 

Afterwards we joined up with everyone at the Loose Moose for the big SONE Polar Plunge after party.  We hung around for a few hours and Macy had a blast.  Seriously, this kid is a fearless social butterfly!  After she finished eating, she got bored and just wandered around from table to table (totally working the room) making all sorts of new friends.  haha.  Love her  :-)

I think she was just getting her "practice" in.  As in a few weeks she is going to serve as a special "greeter" at SONE annual "Breakfast of Champions event.

She is very much looking forward to it!  (me too)
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Oh - lastly - You HAVE to go to "Special Olympics Nebraska" facebook page and "like" it.
Our Little Miss Macy was chosen last week to be featured as their "Athlete of the Week".
WHAT?  OMG - that is so fun I love it!  She's two and is already an "athlete of the week"?  Well, sure why not?  she does YAP.  hehe

You'll have to wait 'til next week to see her sweet mug featured on their page.  

I'm so proud of our little girl.  But most of all.  Today.  

I'M SO PROUD OF THE SPECIAL OLYMPICS ORGANIZATION, THE PEOPLE WHO TIRELESSLY CONTRIBUTE TO IT'S SUCCESS, AND ALL THAT THEY STAND FOR!