22 Months ago...We were worried...how wrong were we?! :)

Warning...long rant...this is my "Down Syndrome Awareness Month" contribution.  :-)
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22 months ago when our Little Miss Macy was born, our minds were consumed with thoughts & preconceived notions, hearts flooded with emotions, our spirit mixed with feelings .  We couldn't quite pinpoint the exact feelings we were experiencing. Were we sad, mad, glad, excited, scared, confused, overwhelmed, intimidated?  We weren't sure...but in hind-sight, I think now looking back, I can honestly say we were simply worried.  Sure, we felt all those above emotions, but mostly, the one that overpowered the rest...worry.
I recall conversations with Joe during the night, after all the excitement winded down, the docs were gone, our visitors had left.  We were alone.  Just the three of us.  Alone with our thoughts.  Finally, we could talk and try to make sense of what was going on!
We were entitled to our emotions back in that moment of time, but I WISH we would have known then what we know (or are at least starting to figure out) now...just how WRONG WE WERE.
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You see, we felt that the vision of our "perfect" baby girl we had been dreaming about the previous nine months was lost.

We were, from the moment we laid eyes on her, understanding and accepting of our little angel, and loved her for who she was.  We knew we should adjust our expectations and accept this new "imperfect" person... Little did we know, she is PERFECTLY imperfect!  BETTER than we could have ever imagined in all our wildest dreams. MORE than we thought we deserved.  Down Syndrome does NOT define her, she is her very own unique individual, as is the case for us all  :)

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Here are some of the things we worried about.   
Some are just plain silly...but they were our honest worries none-the-less.

I was worried that she wouldn't look like her sister.

They look like practically the same person to me...how wrong were we?

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I was worried that I wouldn't be enough.  

This new world of Down Syndrome brought on a trove of knowledge that we knew nothing about.  Talk about information overload...but...

Just hours after her birth, despite the doctor's warnings that she may not take to nursing (at least not at first due to her low tone & weak suck, etc), Macy proved her wrong and she was a rockstar right out of the gate!  Right then and there she communicated acceptance to me.  She accepted me as her momma.  At that moment, I was enough.  One. step. at. a. time.

here's Macy "accepting" me a few months later during an EEG.  whew, I was "enough".

 How wrong were we!

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I was worried that she wouldn't look like US.  

 She's definitely OURS...50.5% mom 50.5% dad.  Boy were we wrong.

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I was worried that her big sis wouldn't be proud of her. 

This is the girls at last years' buddy walk...If this isn't the "face of pride", I'm not sure what is!  I think next year I am going to have a shirt made for McKenzie that reads the following: "my sister got an EXTRA chromosome and all I got was this lousy t-shirt."

And I think we should put a bumper sticker on our car that reads: "My kid has more chromosomes than your kid!"

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I was worried that she wouldn't be able to attend "regular" school.

First day at "typical" pre-school"...big girl climbed into that chair ALL by herself!

She continues to do amazing at Bethany Preschool and is getting along just perfectly...She has way less melt downs and separation anxiety issues than the other kids it seems...She also participates in Sunday School and gets along well at Bethany Buddies during Wednesday's Church Night activities...Can I get a Hallelujah?!  How wrong were we!

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We were worried that "it" might always be awkward.  Her Down Syndrome that is.

Nope, little miss SOCIAL BUTTERFLY couldn't let that happen.  She commands attention in ANY room she enters.  Waving her hand fiercely, locking you in with her eyes, making everyone around her smile, walking with a swagger like she "owns the place".  Her charming personality kills any ounce of awkwardness that may have previously existed. She's the life of the party & impossible not to love.  Besides, I really do not think that people (strangers that is) see it, the fact that she has Down Syndrome, it's just not that obvious.  I think they just see a sweet girl.

How many smiles have you brought to a strangers face today?  Macy averages ten a day I'd say.

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I was worried that she would be sick all the time.

From the very beginning they bombarded us with information, statistics & high likelihoods..."people with DS are more prone to this-that-and the other"....it was a LOT to absorb...Despite the doctor's warnings, a few "scares" and concerns, Macy continues to be (knock on wood) the picture of (pretty much) perfect health!

her big sis during her latest "illness"

McKenzie seems to have had more "issues" than her baby sis thus far.  Kenzie has the not so smooth skin, was more prone to ear infections & diaper rashes, Kenzie had the blocked tear ducts, etc...

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I was worried that she would never back down & drink from the bottle.

After lots of frustration, therapy sessions, feeding clinic visits, Grandpa feeding "techniques" and a hundred bottle styles later...Macy never did LOVE the bottle.  In fact, per the advice of our OT, we basically skipped over the bottle all together and went straight to the sippy cup.  She does awesome with it!!  ha  :-)  I guess the little turd just didn't want to use a stinkin' BABY bottle.

Oh and she's little Miss Piggy...while it took until about 11 months old or so to finally eat solids (that tongue thrust was a struggle for a bit), she has turned the corner and has not looked back.  The kid will eat anything & all day long if you let her!  She signs eat, more, please, milk, drink constantly.  I am usually responding with the "all-done" sign. 

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I was worried that she would be "different" than her cousins  & that they might not "connect" the way cousins are supposed to.

Kenzie's B-Day party

Looks like they are all getting along just fine!  Well, all but McKenzie that is, but that's a WHOLE other story. hehe.  Boy was I wrong!  She is blessed with a gigantically close family, many cousins right around her same age...and they are blessed to have her, she adds to the dynamic and makes our group more diverse and over-all accepting.
I new from the beginning that this was the biggest and most advantageous thing Macy had going for her.  We wondering (never questioned), just wondered why God chose us.  Joe and I of all people to care for this sweet, going to need a lot of extra love and tender-care individual.  Surely there are more equipped & qualified people in the world.  But I figured it out.  It wasn't just US he chose...Our Heavenly Father hand selected OUR FAMILY.  It truly takes a village and our family feels blessed and honored to step up and ensure that she (and all the kids in it) live out the highest & happiest quality of life possible.  That is all.  Simple.  I will be eternally grateful to have been given this awesome responsibility.  I hope hope to make Him proud.

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I was worried for a second that Macy might need special care and would not be able to attend Joy's daycare, the place where Kenzie had been going & LOVING her whole life.

Macy's first week at daycare

Yup...you guessed it, everyone's getting along just fine here too...Joy tells me that all the other kids get excited on the days that Macy is coming.  awwww.  Melt my heart!  The other day, it was the CUTEST thing...Macy was sitting on Tyler's lap (he's 8) in a little recliner watching and commentating as he played the wii.  She was REALLY into it.  And then, he did not know I was there or watching, I saw him kiss her on her little head.  tear.  :-)

Again, How wrong were we?

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I was worried that other people would not love her as much as I do

 ...but, seriously?  How does one NOT fall instantly in love with this face!  There is nothing better than sitting back and just watching other people LOVE ON your children.  No better compliment in the world.

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I was worried that she wouldn't walk til after her 2nd birthday.  Due to her extremely low tone, our PT & OT predicted that she may be able to start walking around 22 months or so...

Oh yeah girlfriend!  She has been a full fledged walker since she was 19 months old.  I don't generally like to brag, but that was pretty exciting stuff!!!

Not only does she walk, but as you can see in the above video, she dances, twists, twirls, runs and shakes her bootie  :-)

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I was worried that I'd feel alone in this new DS world.
Boy were we WRONG!  First of all, did you know that DS is the most common genetic disorder?  There are over 400,000 individuals world wide who are effected by Down Syndrome.
We have met soo many wonderful people right here in Omaha as a result of Little Miss Macy's extra chromosome.  People we are lucky to call friends!  The Down Syndrome Alliance of the Midland's has been an invaluable resource.

Casie & Vernon came over to meet Macy when she was a couple weeks old...they were the first of many who shared this common thread to enter and enhance our lives.  Our DS Supermom's group meets regularly, we share, laugh & cry, but mostly we empower each other.  Together - We will move mountains.

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I was worried that she would overshadow her big sis with her special needs.
I'd like to say she doesn't and we try VERY hard every day not to make Down Syndrome a focus.  I'd say it's maybe 20% of our lives...But with Macy's special teachers coming to the house regularly, extra doc appointments and extra "cuteness", what can I say?  hehe  Oh, and I suppose it is tough to compete with "Times Square".

Remember this little picture that was featured in a national video on the big screen in New York City just recently & she was featured on the local news because of it...ha!  I can't even compete with that.  And she's a calendar girl.

But seriously, our family & friends understand the importance of recognizing McKenzie and all of her good and amazing qualities, and how important it is to love on her JUST the same.  Afterall - THEY ARE MORE ALIKE THAN DIFFERENT!

McKenzie did very much enjoy the spotlight and, I'd say, slightly overshadowed Macy this summer when she was a flower girl in my cousin Terry's wedding down in Texas.

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I was worried that I'd never be able to utter the words "Down syndrome" out loud without crying. 
Those first few weeks were difficult.  It was still all so surreal.  This world was so foriegn to us.  The words could not form with out the accompaniment of tears in the eyes and lumps in the throat.


But, all that has changed.  Now I can say it, DOWN SYNDROME, with no problem, no hesitation or hint of a quiver, confidently & with a huge sense of pride as matter of fact.  I am proud to talk with anyone about the challenges, struggles and fulfillment that comes along with our new life journey.  If anyone has any questions...ask away!  I do not pretend to know everything (who does anyway), but I am no longer intimidated or scared.  I now know that we are not alone, that there are many others riding on this same roller-coaster ride and have similar fears, worries and concerns that we do.  We are all going to be okay.  just fine.  I have even been brave enough to speak in front of a few groups and on the local News about Down Syndrome.  Even shared our story and experiences with the medical community...Never thought that could have been possible.

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I was worried that she & her sister would not be able to truly bond.

 How wrong was I about this worry as well!

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 I worried that our lives were forever changed.
Yes, at that moment we were rocked to the core and we thought all we knew would never be the same.  But, again, we were wrong.  Nothing has changed, our perspectives, rather, have simply been reassessed and, I'd like to think, improved. My relationship with God has deepened. My appreciation for all that is good in life has been strengthened.  My relationships with family and friends have been enriched.  I mistakenly thought I'd have to give up some things that I found "self-serving" joy in.  But, no.  I still play Volleyball on Mondays.  I still have my monthly Bunco group & Cook Club gatherings.  I still go to my same "typical" mom's group functions.  I still enjoy GNO's on a regular basis with good friends, new & old.  We still have our crazy families of whom we see ALL THE TIME.  So, my life is still my life  :)

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I was worried that she may not be able to communicate.
While, yes, she is (and always will be) developmentally delayed, both physically and cognitivitely and she is not technically speaking words just yet...she has NO problem communicating (in her way) all of her wants, needs and desires.  She makes exceptional eye contact, is exceptionally visually expressive and persistent.  She signs, points, babbles, etc...THE GIRL KNOWS WHAT SHE WANTS AND SHE GETS IT.

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I worried that another typical family vacation seemed like a FAR off (if ever) dream.

I was wrong!  We have taken a few trips, several weekends out at the lake, she even went on her first plane ride & saw the ocean this summer.  

Nothing is holding this girl back  :-)

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So, in conclusion, I will end with a quote that Joe often falls back on...
"We've got a lot to think about, but nothing to worry about".
So very true.  It's all good!  :)

Other words I live by these days..."Don't let your fears of tomorrow, rob you from the joys of today" 

Our Buddy Walk team pic!

This is our 2011 "Movin' with Macy" Buddy Walk team...minus about 30 or so who were off wandering. It would have been impossible to get everyone in the same place at exactly the same time, especially with the loud music and many fun distractions all around

 I actually think it was quite miraculous that this group of 90 was able to "pull it together"...especially considering the kids outnumbered the adults...no joke! :)

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A big thanks to Russ Lindemann of Regal Photography for snapping this pic for us!!

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The other "outakes".

Preschool Picture Day!

It's Picture day...& what does that mean?  oh nothing really, just a reason to get pretty & brush the girls' hair  :-)
Since we had a few extra moments to spare before running out the door this AM, I decided to snap a few fun pics of my own.  hehe

posing on the pink circle chair...not exactly a smile from McKenzie, but hey, she's looking AT the camera and she's NOT not smiling.  hehe

Now if only I could get them to look my direction at the same time...hmmm.  Again, not a real smile  by Miss Macy...but, hey, it works for this momma!

This just about sums up their "relationship" I guess you could say.  ha!

 We moved outside for a quick "shoot" on the hay bail.  why not right?

so at least I got one really great shot from our morning "mini-session".

"hey sis, get over here...if I've gotta get my butt poked by these hay thingy's, then YOU DO TOO"

"There are you happy yet?"

"Okay, you got one, now let's go to school already!"

Does Kenzie look pleased back there or what?

 Now I'm excited to see how the pro at school was able to "capture" their beauty  :-)  I sure hope they behaved a little better for him!

2011 Buddy Walk!!

This post is delayed a few days because I am unable to find adequate words.  I'm at loss for words.  Words, at least the ones in my thesaurus, do not serve justice when attempting to describe how I feel about this past weekend's Down Syndrome Alliance of the Midland's Buddy Walk.  It was amazing!
The preparations have been going on for several months.  Family & friends have been donating GENEROUSLY to our "Movin' with Macy" fundraising page.  We finished in the "TOP 5" of Omaha area fundraisers, woot woot!  The t-shirts (nearly 100 of them) had been designed, ordered & distributed.  Communication of logistics had been shared with prospective "walkers".  Gayle flew into town late Friday night (especially FOR the Buddy Walk).
We arose to a quiet house on Saturday morning (McKenzie slept over at cousin Anna's!!).  hehe  It was brisk, but otherwise PERFECT weather.  The car was already loaded up from the night before.  All that was left to do was simply put on our shirts, get in the car and head to UNO.  And just play out the rest of the day as it unfolds. 
It "unfolded" wonderfully!  The big open field was a buzz with excitement.  Tons of really fun things for people of all ages to do...bounce houses, photo booths, dance floor (complete with DJ & BUBBLES - this was a HIT with Macy), face painting, the list goes on.  The best part was just taking it all in.  Simply standing there are watching everyone around me.  EVERYONE was having a genuine good time.  I also LOVE seeing all the various groups & their special designed t-shirts.  Many people get super creative.   :-)
Yes, people all around us were having a good time, as they should have been, the main purpose for this gathering was to support, advocate and celebrate all individuals who have Down Syndrome.  The future is looking bright for us all, including them!
 
My other favorite part of the Buddy Walk was just waiting.  Waiting as our "Movin' with Macy" team members trickled in and joined our "circle".
As the morning went on, the air around us got warmer and our little group got LARGER.  Between, family, friends and the Pi Ep sorority girls (plus dog), our group had grown to 120+ strong.  All I have to say to that is...WOW.  I am SOOO very grateful to those who took time out of their busy day to join us for this walk.  It truly means the world to me!  Some were unable to attend due to illness or schedule conflicts, but they were with us in spirit & I genuinely appreciate their thoughts & prayers for our big day  :-)

As I think back on the day, I can't help but still have a "lump.in.my.throat.pit.in.my.stomach.warmth.in.my.heart." kind of a feeling.  I was thankful for a bright and sunny day, mostly because I found myself getting teary eyed many a times throughout the course of the day.  But this was for only me and my dark sunglasses to know  :-)  I'm a crier, what can I say?  This is nothing new!

It is so funny to think how I allowed and was comfortable with Macy just wandering around.  She ventured well outside her usual 10 foot radius of mommy & daddy.  And here of all places?  Why would I let a 21 month wander around mid-town Omaha (Nebraska's big city), in this HUGE crowd of (my estimate) 5,000+ strangers.  Because here, these people do not feel like strangers.  Here, we are all linked to one common thread.  We ALL love, care for and support someone who has a little something extra.  Macy was IN HER ELEMENT!  Parading around confidently like she owned the place.  Walking, strutting, waving & flashing that million dollar smile to everyone around.  She has a natural swagger in her step lately & I think it is just the cutest thing ever!  She swings her arms from side to side, shakes her hips with every heaping step and pushes her tummy outward a bit, ha, love it!  Each time she tried to escape our area (and she did SEVERAL times), I did not run after her, I simply continued whatever conversation I was currently having.  So long as I had a visual on that long blue balloon that someone I tied to her belt loop, we were golden.  Besides, I knew other people in our group were also watching out for her & keeping and eye on her too.  I was not alone.  Especially not here.  There was always someone who would take the initiative, chase her down and bring her back over to her "place".  I was able to bounce around & chit-chat with most everyone who showed up to support our team, without having to worry about the needs of the girlies.  A BIG thanks goes out to my sister Keri for taking Kenzie in as her daughter that morning (my sisters have a away of doing this regularly).  On this morning, Kenzie just ran around playing the games and eating the snacks with cousin Anna (Keri was never too far behind them).  Thanks Keri for allowing me to relax and actually TALK to people  :-)
The simple thought of KNOWING you are not alone.  KNOWING that there is a village of people "on your team", lending you a helping had and loving on your kids right along with you is, quite simply, the best feeling ever!  Loving someone else's children is by the best compliment you could ever give a person.  I felt the "compliments" all around that day!

At home, ready to go!

this looks similar to last years' pose...minus big sis as she slept over at Anna's house  :-)

My friend Emily and her sweet Olivia were among the first to arrive.  Bless their hearts!

Macy & Grandpa dancin' to the music  :-)

she found the BUBBLES!!

"Mom"..."Is this heaven" she wonders".

movin' & groovin' to the beat.  Make note of Grandpa watching from afar.  Kind of like her bodygaurd off in the distance.  As I mentioned before, this girl is NEVER alone!

Macy and (her boyfriend) Jaxson enjoy the bubbles together  :-)

he was VERRRY excited!

oops.  caught that one in action as it happened.  ha.  Macy, you need to understand, this is just how boys show their affection sometimes/  by pushing & shoving.  hehe

our buddy Vollen with his uncle.

There's Wesley & Vollen's momma's!

Jagger & his dad. He sure is a rockstar!

Chloe & Elizabeth

and she's off.

Casie & Macy having a little convo before the walk begins.

Macy LOVES stealing everyone's glasses...here she tries Jaxson's mommys (Tasha's) on for size.

"Hey Jagger, what do ya think"..."are they a good look for me"?

"Hey Olivia, thanks for coming today"  :-)

"wanna see my balloon"?

and again...she's off!  trying to escape once again.

I wanted to have all three girls pose in front of the wagon.  yeah right.  As if that could happen.  They were all WAAY to busy to stand still for silly old mom.  haha  This is as good as "that shots" going to get.

McKenzie playing with the balloons.  She referred to this day as "Macy's day".  :-)  She knew it was a special day!

Macy not wanting to hold still for the pic...not gonna do it mom.  I wanna GO!

Aunt Keri and McKenzie deciding on a stamp design

The Sparkle cheerleaders giving a performance.  They did a fabulous job!!!

um yeah.  She walked right up to the bubble machine, stuck her face against it...even opened her mouth!  This girls' afraid of nothin.

Penny came to the walk with her two girls, Devan & Corey.

Niki & Macy.  Do you see a theme here?  now that she's a walker, being held is for the birds.  Let me down, I want to GOOO!  :-)

But people kept picking her up & lovin' on her anyway  :-)  She doesn't seem to mind hanging out with cool cousin Ashlynn and her friend Dakota though!

Here she is with her "Pi Ep" friends.  It was sooo sweet of thes ecollege girls to make the drive into Omaha and support Little Miss Macy at the Buddy Walk.  Thanks again ladies!

Natalie showed up with friends to support team "Movin' with Macy".  She is such a sweetheart!  I wish her sister Katie (who also has DS) could have joined us again this year...maybe next tim!

Autumn, Macy, Ashlynn & Dakota. 

Cousin Mason decided he want to join in  :-)

My dear friend Adria from K-12 school joined us as well!!

Jeremy, Macy, Uncle Gordy & Grandpa Harnisch!

Macy with Grandma Harnisch  :-)

awww.  just check out this little cutie-pie's hat!

Emily, Oliva & the Edie's.  Jenny, Nate, Emma & Tucker

The Mazur's Emily, Renae, Kylie & Blake...minus Randy because he had to work.

there goes Macy trying to escape again.  haha

Macy with two more of the Pi Ep girls.  they brought a mascot for us!

okay this was funny.  All the Pi Ep girls were dancing (I think it was to that Soldier Boy song).  Macy just stood there watching the whole time.  hilarious!

she wouldn't move, she just stood there.  ha!  she's like "teach me"

Laura and Claire!  "The Baum Squad".

Jenn & Molly...oh...how cool is this?  Molly, decided to start walking this day of the Buddy Walk.  whoo-hoo!!!  Go Molly GO!

Two friends from college and their brand new babes.  Tyson, Heather, Tiff & Sawyer

The Wees & Becker families

hi Brook.  Don't look too excited.

Keri opening the girls banana and string cheese snacks.   Thanks again Keri for taking care of my big that day!

ME.  oh muy goodness, I actually made it in a shot.  hehe.  Alex & Lyla got in there too  :-)

The Witt crew (and Macy)

Ja & Bethany, Neeley & Grady

Lucy came over to say hi!  She is Macy's Occupational Therapist  :-)  As you can see Macy is demandingly signing eat. Which, of course, makes Lucy proud... I, being mother of the year, was ignoring it, Aunt Keri however, after this photo, snagged her and took her over to the snack table.  THANK YOU!!!  hehe

Emily and Leah!  Leah did not join us on the walk, as she is "with child" and starting to get uncomfortable as of late...but I am SOOO glad that she and Charlie came anway  :-)  I am sad that I do not have pics of her little guy Charlie as he was over at the Bounce house the whole time.  Leah's mom Linde was also at the walk, but I did not even get a chance to say hi to her, as she was chasing Charlie around.  What a GOOD Grandma!

Jenny's mom Mary also joined us for the walk!!  How sweet  :-)

Pastor John came out with his little ones, Ethan & Leah. 

I think this is a great picture of them all  :-)

Brian, his two boys & Adria!

Auntie Gayle (who is the bestest! and wins the award for have traveleing the farthest to be here) & Grady.  love this pic!

Mayor Suttle sharing some words and making a declaration that this day, October 15, 2011, is National Down Syndrome Awareness Day for Omaha.

Tod, Sam & Jessica  :-)

Emma & Macy...Macy is still playing with this chip bag she stole from Olivia.  I think Olivia gave it to her, but none-the-less, macy carried it around ALL morning.  hehe

Let's get this walk STARTED!  Grandma Lee carried the Movin' with Macy banner proudly.  Macy tore it off her wagon.  go figure.

All lined up and ready to go.

Ethan hiding behing the pole.

Great shot of Adria, Brian & the boys.

Jim's such a good daddy.  I was bummed that my sister Lisa was sick and not able to come to the walk, but glad that Jim & the kids still came anyway  :-)

Hi Becca  :-)

McKenzie was the "line leader" for a short while.

this might be close to all our group...

Penny & her sweet girls.

The Rogert family...minus Maddi who was home sick but with us in spirit.  Niki said she was wearing her "movin' with macy" shirt.  hehe

nice Erika!

going over the Dodge Street Pedestrian Bridge!

check out that huge line of people winding around Memorial Park.  It stretched for WELL over 1&1/2 miles as the front of the line caught up to the middle at the bridge intersect.  little bit of a bottle-neck.

Brook & Ally being silly

My Dad had the best seat in the house, near the top of Memorial Park near the monument.  He had a great vantage point and got lots of wonderful photos!

Ja, Bethany and the twins playing in the open grass area during the walk.

It was neat to see the Westside Football team lined up throughout the course of the walk.  What a great show of support.

This is when Macy fell asleep.  Right there in her wagon.  The walk was about 3/4 of the way over...what a party pooper.  hehe

McKenzie checking her out.  trying to wake up, but no go.

Finally Aunt Heather couldn't handle watching her bob around in the wagon, so she picked her up and carried her the rest of the way  :)

One last pic with the Pi Eps.

Macy Special Education teach Renee also came out to support the Buddy Walk!  Great to see her there  :-)

Our friend Brady.

Bella & Tracy!

We were able to gather for a large group shot...I will share that once Russ sends it to me.  I am sooo glad he took it for us  :-)  Can't wait to see how it turned out.
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I stole the below pics from Keri's facebook page and from my dad's camera as well  :-)

Kenzie enjoying the bounce house and obstacle courses!

getting her face painted.

Cousin and Anna sliding

Two beautiful sisters...Anna & Erika

My dad and I taking pictures of each...taking pictures of each other

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This is not the best shot, but it was on the drive home...it shows the wild girls having a fun time with the balloons in the backseat!!!

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What an awesome day!  We went home, took a power nap and walked over to Bethany for the fun Fall festival.  What a perfect day for all these outdoor activities!  :-)

Grandpa like bodyguard hiding in the wings.