The Harnisch Family

The Harnisch Family

Oct 28, 2011

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!!!
video

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" 

2 comments:

  1. We couldn't be any more proud of you and your beautiful little family! Your girls are amazing because they have such amazing parents. Love truly does conquer all!

    Love you like family! (he he)

    Keri

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  2. Thank you for this beautiful post! I am crying of course but this really helps me put my family's future into perspective. Thank you, thank you!

    ~Leah Janke

    ReplyDelete