This Little Light of Mine.

School's out for Summer and the house has gotten 4x's louder!  When we're not at the baseball diamond (3 sons on 3 different teams.  O M G.  It's killing me!  Am I the only mom who prays novenas that games are called because of rain, or that they lose so we don't advance in tournaments!?), we're enjoying carefree days outside, at the beach, sleeping in, (and taking all 6 with me to doctor and therapy appointments!  Now YOU should pray a novena for ME!?)

 

The boys were zooming through the house the other day, forced inside (and under foot), thanks again to rain.  (oh, but it cleared up in time for baseball!)

"She's Up!  Annie's up!" Mason yelled (gee, I wonder why!?!?!), and before I knew it, 3 masked-Jedis were flying up the stairs to see her.  Whenever the kids see her, after a nap, after school or any other time apart, it's as if they've been away for days.  They get soooo excited! 

I tried to stop them.  "Wait you guys!  You're going to scare her!"

Now, I've never seen "Star Wars" in my life.  I know, I know..you're thinking- 40 years and 4 sons, and you've never seen "Star Wars?"  Un-American!!  No, just uninterested.  However, in my 40 years, and through my 4 sons, I've picked up on enough to know that some of those creature guys are kinda creepy, and they were about to barge in on my baby! (Darth Vader, a Clone and Darth Maul to be exact)

But Annie?  She just smiled, and laughed, and reached for those creeps!  She wasn't afraid at all of the Dark Side!!  She even posed for a picture!

But me?  I still tend to fall for that darn Dark Side.  I still let it catch me off guard, when I'm tired or afraid, and I let it get me.

Up until recently, Annie has pretty much been just like any other baby-more alike than different as the say in the Down Syndrome circles.  And this is so true.  In this family, Annie is just one of the gang.  #6.  The baby.  She does what we do, goes where we go, and Matt and I treat her no differently than we do any of our other kids. 

She loves the water, especially playing in it.  She thinks the toilets are water tables

 

 

She loves emptying my cupboards - all day long.  Her favorites are the ones under the kitchen and bathroom sinks.  I know she has eaten dish soap more than once, and I'm pretty sure that she likes it

 

 

She has a love affair with the vacuum.  Not kidding.  She hears it start up and she swoons, and follows me around the house!  I have to leave it running when I'm finished, just so she can hug it, and she wont stop until I turn it off

 

 
She loves her brothers and sister SO much, and wants to be in on everything with them.  Doesn't want to miss a beat!  And they are wonderful at including her.  She sees 3 therapists regularly, and they are fantastic, but you will never ever convince me that these 5 aren't her best teachers, hands down.

 

 

 

 

 

But I promised myself when I embarked on this blog, that I would be as real and as honest as I could.  I haven't always been proud of my feelings or reactions to things when it comes to Annie, but if it helps just one other mother, or father, or sibling, I'm willing to let it all hang out.  As for my literal dirty-laundry?  You don't want to see that.....talk about scary!

As she gets older (she is 19 months already!!), Annie's disabilities and delays are becoming more and more apparent.  Babies of friends and family born 6 months (or more) after her are already walking and talking circles around her.  And while we knew this, expected this, and anticipated this, I never anticipated the sadness that would still sweep over me. 

While friends and family proudly share (and rightfully so!) their baby's growing vocabulary, first steps and other milestones, I keep plugging away at Annie, oftentimes with minimal results.   Up until a month ago, she showed little interest in walking (however, lately she's quite the show off, taking 3-4 independent steps at a time!).  It took me over a month just to teach her to sign "more."  She doesn't say one word with intent.  I take her to weekly PT and OT appointments where they try to "teach" her to play and strengthen her core muscles so she can eventually walk, and sometimes I question if it's worth it. 

Everything she does that a typical baby does with ease - everything - takes extra effort, strength & energy, not only from her, but from us. 

And sometimes I get sad.  Sometimes I get mad.  Sometimes I get frustrated, and I get tired of all of the "extras" she requires.  I don't like to think too far into the future because it fills me with all sorts of "what ifs," and then I go to Google, and then it's all downhill from there....Sometimes I find myself still asking, "why her?"  I stare into her adorable face and wonder, "What is it that you want me to learn from her, Lord?" 

And He answers me, every time, with Light.

You are the light of the world.  A city set on a hill cannot be hidden; nor does anyone light a lamp and put it under a basket, but on the lampstand, and it fives light to all who are in the house.  Let your light shine before men in such a way that they may see your good works, and glorify your Father who is in Heaven. - Matthew 5:14-16

So when I'm wallowing in the muck of the Dark Side, I just look to Annie, who could care LESS that a fellow baby is walking or talking, she just wants to play!  And I know exactly what she's telling me with her infamous, pardon the Star Wars reference, "Chewbacca" call (my friends and family know what I'm talking about here)  Who needs words?  And I learn from her, more than she'll ever learn from me.

I've shared before that there was a time, before Annie was born, that I was afraid of what she would look like (and how can you blame me, when, out of the blue, I was informed that my baby had a missing nasal bone, shorter limbs for her gestational age, and holes in her heart?)  I was afraid of telling people, and feared their reactions when they saw her.  I didn't want to be know as that "family with the Down's kids"  I wanted to put her "under a basket."  I doubted the Master Artist, and instead painted my own picture.  And it wasn't pretty

But oh was I wrong, and I'm making up for it.   I'm sure I drive my "friends" on Facebook nuts with all of the pictures I post (unless they've blocked me by now..haha), but I can't help but share this face!  This face?  She's my light in the Dark Side.  She is everything good and right, and I'd share this light with the world if it meant helping just one scared mother choose life.

 

 

 

 

Would I ever wish Annie's Down Syndrome away?

I can't.

I can't wish it away because that would fundamentally change who she is.  I can't wish it away because I would miss out on a lifetime of love and lessons and light that only she can give. 

And so we move forward, at Annie's pace.  And we are brave because we know that, even when we dabble in the Dark Side, it won't win. 

Thank you, Star Wars.

*********************************
P.S  She finally got some teeth since I last posted!  And in a very unique order: one on the bottom, followed by 2 molars up top, one molar on the bottom, the second bottom tooth, and one top front-tooth.  Cutest smile ever

How do you like her new wheels??

 

 

 

What's the Difference?

It has been a while since I've given an update on Annie.....

This could be because for a while we were consumed with all things Christmas, and since Christmas we've been consumed with snow.  lots of snow. 

 

 

Or it could be because most days, I can't even find time to get the essentials done much less sit down to write (or even go to the bathroom!)   I mean, we've got kids hanging from the rafters!  (Well, we don't have rafters.  But if we did, there would surely be someone hanging from them!)

 

But ultimately, I haven't given an update because there hasn't been a whole lot of news to report!  (and that, my friends, is good news!!)

Annie is finally gaining weight pretty steadily!  Dare I say she's even chunky?  Oh I love me a chunky baby! (I love me a skinny baby too!)  At last weigh-in she was 17.5 lbs! 

 

She had an appointment with the cardiologist last week.  Let me tell you, these appointments rival any P90x or Turbo work-out (well, not that I know that from experience), as we try and keep her contained (and entertained) for the 2+ hour appointments!  For starters, Annie, Matt, the ultrasound tech and I were sticky from head to toe from her "distraction" (aka, a sucker!), but by-golly they got a successful echocardiogram without having to sedate her!!   Matt literally had to pin her down for the EKG and blood-pressure check, she tore apart the exam-table paper as they tried to measure her, nearly leapt off the scale as they tried to weigh her, and chewed on the stethoscope as the doctor listened to her heart.....And????  Her heart function is great!  Less than one year since her surgery, Dr. Butto couldn't even hear a murmur anymore!  Wow!!  There's one area he's going to keep an eye on - She has some scar tissue on the aorta, near the valve, which may possibly pose a problem with blood flow down the road, but it's not a huge concern yet.  Next appointment is not for another 6 months! 

She "graduated" from the 12-month tummy-time study with the U of M Doctoral candidate.  Although it was neat to be a participant , I must admit it feels good to have one less appointment!

She still has physical therapy every week, and we meet monthly with her intervention team.  Their main goal at this time is to get her walking.  She was doing really well with 4 point crawling (up on both knees, keeping her hips in line), but has started swinging one leg out, kind of like a little frog (that darn uber-flexibility!)  Soooo, back into her "skinny shorts" she goes!   (and like her mama, she hates skinny-anything!!)  The delay in walking is truly NBD!  This mama is in NOOO hurry!  Had this been our oldest, I'd be freaking out!  Now?  Not so much....... She'll get there!

 

(These photos from therapy are done from afar, and unbeknownst to Annie. 
If she catches sight of me, it's all over!)

Not that I haven't had my share of freaking out with Annie......There was the diagnosis of her heart defect & disability, her birth & time in the NICU, her slow weight gain, her open-heart surgery and recovery....and her lack of teeth (still, nada one!)    But through it all, Annie is "just" a baby.  And truthfully, most days I no longer see Down Syndrome when I look into this little lady's eyes.  Had you told me I'd be at this point a year ago, I'd never have believed you.  That's ALL I saw before - and for a time, after - she was born.  And it's all I assumed others would see.  I was surrounded with reminders.  Three of my nieces, several friends, three of Matt's cousins and his brother all had babies within a year of Annie (holy baby boom!), and I used to anxiously contemplate:

"What is it going to be like to watch these "typical" babies grow up alongside Annie, and blow right past her in milestones?"

"What if there comes a day when they won't want to play with her because she's different?" 

 

(Here she is with a few of the aforementioned "baby-boomers"  So far, not so sure what I was concerned about!)

 

 

Now, I look at Annie and I understand that she is exactly who she is meant to be, with the family she was meant to have, and I feel overwhelmed with gratitude....

Time is marching on, and, as they say, time heals all wounds.  

Today, I feel healed. 

But some days, dare I say, I miss the wounds.  Looking back, I realize that those times when I was entrenched in fear, pain and mourning was when my soul was most alive and I was acutely focused on what truly matters!  My relationship with God became my lifeline, my marriage was strengthened, and my true friends were revealed.  I will never forget how she has changed me.  Changes me.  Every day.  And I would go through it all over again, over and over again, for this girl. 

I personally made a big step last month!  I did something I swore I wouldn't do.  Something I swore I didn't need.....  Annie and I attended a "play group" for children with Down Syndrome.  This group meets monthly, and is led by a doctor who works with special needs children, and has an 18 year-old daughter with Down Syndrome.  She also leads a parent group that we plan to check-out soon.  

And what did I learn?  I learned (or rather, confirmed!) that these are some pretty amazing kids- and families- and I'm both inspired and humbled to be a part of this community.  I'm sure I will have much to share from my new wealth of resources as I continue to learn, and to grow, right alongside my daughter.  (And I learned that Annie has no trouble making friends... #lifeoftheparty!)   

Are they not the CUTEST???

 

And lastly, one of my favorite slogans for Down Syndrome awareness is "More Alike Than Different!"  How true it is!  Annie really is no different than any of our other kids.  In fact, I fully expect one day she'll be hanging from the rafters too.....if we had them.  

So, as I close this first chapter of her life, allow me the privilege to share just how "alike" Annie really is:

She loves "helping" with dishes, laundry, and other household chores

 

She loves the bath

She loves to eat.  Anything.

 

 

 

She's loud in Church (just take my word for it.)

She can hold her own in a battle (The boys call her "Annie-kin Skywalker!)

 

She loves a good party

 

She loves her brothers and sister, and they love her.

In fact, she's just one of the gang around here.

 

And that's how it will always be.  Annie is no different.

 

And for those of you who have followed this blog, Annie's friend Vincent is also doing great!  (For anyone new to the blog, you can read more about Vincent in the "Companions on the Journey" post from January 2014.  It's a pretty cool story!)  He also had a good check-up with the cardiologist, has 4 teeth (he always has been a carnivore!), and is just "one of the gang" at his house too!!