Perfect

Today was perfect.

Which is funny, because it didn't really have any potential to be perfect.  But looking back, it was just that.  And some days, you know they are going to be special days... whether it be something really fun planned with family or friends or a special occasion.  Today was a mess of a day.  Snowed in, plans ruined, husband away for work and a whole-lotta-craziness, all of course unplanned.

And then something really special happened... I had a revelation.  And it started like this...

I am kind of a sucker for sentiment (that is an understatement...) and since I LOVED my childhood... I often want to recreate moments I had as a little girl, for my own children.  I remember making gingerbread houses with my mama.  And this December, I was excited to start this new tradition with Clay.  And with a snow storm looming, I just happened to slip a gingerbread house kit into the shopping cart and chalk it up as the "just-in-case-we get-snowed-in" activity. Snow day happened... and I was excited to have a Plan B.  So I set out all the different dishes each brimming with Christmas colored candy just waiting to be a part of this glorious gingerbread house.  I showed Clay how to put the icing on the roof, and then... it happened.

Apparently, we had different ideas of what the house should look like. And the battle within my conscious began.  One side of my brain reaching out my hands while the inner voice was yelling at me, "He's not doing it right.  He's being messy.  Help him!  Save the house!" The other side snatching my hands back in, "Let him be.  It will be just fine because he is having fun. The house will look great because he is making it."  And then after two icing dots and two gumdrops (randomly placed I might add), Clay turns to me and says, "I'm done."

Well shamefully, the naughty conscious won today because I said, "No, no... we have lots more to do."  And I took that icing bag and iced the whole dang house by myself and he added lots more candy.  And so for today, it was a compromise of his 3-year-old-ness and my perfectionism.  Admittedly... I needed to just let him be but I saw more fun to be had... and more fun happened.  And we were both happy with the end result until he looked at the box the kit came in and looked at our gingerbread house and a sad look crossed his face and he says, "But ours doesn't look like the one on the box."

No son... it doesn't.  But, ours is perfect.  And I realized... it is perfect because we love it just the way it is.

This word perfect... it has me thinking today.  I used to look at this word as rigid, someone else's standards, unachievable and at a high cost.  It was negative.  It was someone bragging.  It was unrealistic.

In this last year... I have learned so much about perspective and looking at life differently.  When I found out about Lilah's dwarfism diagnosis, society was telling me that she was imperfect.  That her genetic condition was undesirable.  That she would be physically different and there would be a stigma attached to that.  And then when I met her... all I could think of was how perfect she was.  She wasn't broken or anything less than.  Nothing about her was undesirable to me and her differences were what made her unique.  That's when this word changed for me.  It no longer meant someone else setting the standards, it became positive and attainable.  Perfect is what you make it out to be.  Perfect is when everything feels just right.  Perfect is what you create.

"Every good and perfect gift is from above" James 1:17

And so, we carried on our perfect-mess-of-a-wonderful-unplanned-day of playing in the snow, visiting with great friends & neighbors and of course... lots of snuggling.  It really was... perfect.

Lilah's Monthly Pics

So, I kind of have a "thing" for traditions.  And when having children I had to bear in mind that what I do for the first one, I will have to do for all of them.  So in the name of common sense, I decided not to go gang-buster with Clay (which I easily could have) and remember that with each child, I will have less time to repeat these amazing traditions.  And so, one tradition that I do is monthly pics.  A great way to see their little personalities come out and fun for me too.   With that said... here are Lilah's monthly pictures over the last year...

Dear Lilah... You Are One Tomorrow.

Dear Lilah,

I just reread my blog post from a year ago... Baby's Eve.  I wrote that the night before you were born.  Here we are 365 days later... the night before your first birthday.

Oh my goodness... this year.  This year has been so wonderful because you were in it.  It is so hard for me to believe that exactly a year ago, I didn't even "know" you yet and I had this crazy love for you. And now I don't even know how to describe my love for you because you are you... I know you now and I am so in love with you.  And "crazy-love" just doesn't even begin to give this love justice.

I think I realized the deepness of this love in the wee hours of the morning when you were just six weeks old and I realized something wasn't right.  I would stay awake and listen to you breathe in the cradle next to my bedside... and the pattern seemed too inconsistent.  You would startle and stop and take deep breaths and then nothing.  My motherly instincts told me something was wrong.  I immediately ordered a sleep study and in those long nights during the weeks between this discovery and the results of the sleep study... I would do something I told myself I would never do... I held you close to my body in the bed next to me and I would sleep with you curled into my arms.  Too many times in the night I would shake you when you stopped breathing.  I would cry.  And I would pray to God to not let me fall asleep so I wouldn't miss a time when you stopped breathing.  It was so hard.  My nights were sleepless and they had to be.  I would rest but I was always listening to you breathe.  This was when I realized that I had to have you.  I couldn't not have you.  In my heart I felt like I was too close to losing you and that thought killed me.

Yes, you had obstructive sleep apnea and it was confirmed that up to twenty times a night you stopped breathing for over twenty seconds.  This was when we hooked you up to the Breath of Life Monitor every time you shut your eyes, so we would be alerted when you stopped breathing.  And even though I had more peace of mind that you were safe... when that alarm went off, it was a drop-everything-moment-and-get-to-you-in-3-seconds-to-shake-you-and-get-you-breathing-again.  That was hard too.  Because once that alarm went off, you had already stopped breathing for twenty seconds.  I hated knowing that... my heart stopped each time I waited for you to breathe again.  And there were some nights where we all slept and the alarm was silent.  And then there were some nights that I would lay my head on the pillow and the alarm would go off and that would be a repeated routine for hours.

I even made daddy buy a huge outlet that plugged into the car so we could plug that machine in and hook you up so when you fell asleep in the car, I knew you were breathing.  And when the alarm went off, I would pull over immediately and check you.  I think it was safe to say I was in crazy-mama-bear-mode during those months.

And then... miraculously... it stopped.  Praise God! You outgrew the sleep apnea.  We took those awkward electrodes off of you and we never looked back.  You my dear... you were a champ.  {And for anyone out there that has had little ones with life-threatening challenges... my heart goes out to you.}

I feel like I got to see how seriously precious life really is.  How it can be taken away from us within seconds.  And some mamas aren't as lucky as me... they don't get to see their babies grow up.  This thought really put things into perspective for me.  You survived.  You are here.  You are a miracle.  Everything after that seems so irrelevant in the big picture of life.  So you are different?  So you are little?  Do you know how many mamas would trade places with me just to get to see their baby grow up?  Let me remind you... you survived.  You are here.  You are a miracle.  God is in charge and God is so good!

The fact that I get to be your mama... the fact that I get to see your personality take shape... the fact that I get to see you accomplish new things... the fact that I watch a smile spread across your face hundreds of times and hear that little giggle of yours... everyday.  This is what matters to me.  Size will NEVER be more important than that.  You taught me that this year.

A year ago, I was so excited to meet you.  I described it like, "our family was starting a new chapter and only the future would tell what the pages would hold."  So true... I could see these blank pages as I thumbed through them in our book of life.  I had no idea what our story would be.  And now, to look back over a year and see the pages filled with {1. LOVE}-- an outpouring of love from family, friends, strangers... it has been such a powerful feeling to know how supported we really are.  And it has given me so much confidence in people.  Yes, people really are good!!  The love has been one of the best surprises from the last year and it just keeps on coming.  Our safety net went from a tiny little thing to this huge monstrosity that I would never mess with... yeah, it is safe to say that people got your back, baby.  You are good to go.  {2. FUN}-- I feel like we were given these secret set of keys that unlocked the door that said "Happiness."  Once you realize how lucky you are in life and that you have everything you need right in front of you and all you have to do is look around and let happiness envelop you... life becomes... well, fun.  And we took advantage of this over the past year and we did all the things that make us happy all the time.  We were adventurers and we loved life and life loved us right back.  {3. CHANGE}-- we changed as people, as parents, as children of God.  We started stretching our minds, appreciating the small things and learning along the way.  We started sharing our story, reaching out to others and spreading the love.  And this incredible thing happened... people started doing that back.  You, my sweet Lilah, have affected so many people... you may never know how you have directly changed people's lives, but I am told all the time... you have this gift of making people fall in love with you... you are so special.  You hold so much light in your eyes-- you really are mesmerizing... and one more thing... you are already changing the world.

And tomorrow you are one.  And with tears in my eyes (how can you be one!?! this can't be happening so soon!!) and daddy rolling his eyes at me because I am all sappy about it... you are really one.

Happy Birthday to you, my little birdie.  (And there go the tears again!! And I know I am being ridiculous but I guess I thought you being little would be my way of keeping you little longer and then you went and grew up anyway!  Aghh!!)

You are so precious to me.  You are such a gift from God and I am so proud to call you mine.  I hope you enjoy your "Oh Happy Day" party and I look forward to celebrating many, many more birthdays together.

XOXO and love you always,
your mama

Photos taken by Della Terra Photography

Featured In Hamilton County Magazine!

Here is our featured article and the entire magazine link:

http://www.hamiltoncountyfamily.com/Articles-Featured-Article-i-2013-11-01-257910.114134-Little-Isnt-Less-Than.html

http://issuu.com/indyschild/docs/1113-hcf-issuu

Our Stance on Awareness

I just finished my blog post... read it to my husband, read it to my mama.  "No, " they said.  Try again.

They were right.  I was harsh, I was defensive, I was discussing the extreme and negative viewpoints concerning dwarfism that exist in our society.  My husband asked, "Why did you take that approach?" I responded, "I want everyone to know what is out there so they can see why it is so necessary to be an advocate for dwarfism.  To show how much more work needs to be done in our society."  Did I mention that October is Dwarfism Awareness Month?

But I don't want to be that.  I am choosing to not do that. (Thanks husband and mama.)  And thanks alot to my dear friend Tiffany who is challenging all of us to choose kindness for one week straight.  (Dang it!  Lol) {Week of Kindness} I am all about choosing joy and I am taking that approach in this post: talking about dwarfism awareness.

I love my daughter.  She is the air I breathe, the song I sing, the light in my life.  She has taught me more in one year than I could have ever learned in a school setting.  Mostly, she has taught be to be compassionate, understanding and kind.  She has taught me to celebrate life and not hide behind in the shadows.  She has taught me that different is oh so lovely and being comfortable in your own skin is the fastest way to happiness.

Before Lilah, I had little to no experiences with a little person.  I had never seen the reality TV shows where little peoples' lives were featured, I had never met a little person personally and I can say that little people never crossed my mind.  Chances are, you could say this about yourself too...

I struggle to communicate this next point... both of my children are so unique to me.  I see them for who they are, the glimpses into their future and their silly little personalities.  It is difficult when all I do is talk about how different they are to me and yet I want you to see them as a same as everyone else.  I think parents can understand this paradox. 

In following our story, getting to know Lilah, supporting her, rooting her on and loving her... you are helping to shed light to all of those with dwarfism.  I am a believer in people and until someone proves me wrong, I will always give someone the benefit of the doubt that intentions are good.  In my experience in the last year, we have had nothing but honest curiosity and productive questions about Lilah and her diagnosis.  {And perhaps it is because I live in one of the best places to live... look it up, it's true CNN Best Places to Live.  I love my town, just saying...}   Yes, we may get lots of sideways looks and I know the thoughts running through their heads sound something like this, "How in the world is that 3 month old almost walking!" Lol... But, in all honesty, people have been so good to us.  I have so much faith in people.

When it comes to dwarfism awareness, as a family, we have decided to let people into our lives.  We want the world to see our daughter as Lilah and to take the mystery out of dwarfism.  It is a rare condition and odds are likely that unless you found this blog because you have a connection to dwarfism, Lilah may be the only little person you "know."  Because of the history of dwarfism and some current views and exploitations that still occur in our society, it is important to my daughter's future for us to share her story.  And her story is one of victory, perseverance, and beauty.  (But she's not even one!  How can she already exhibit perseverance?  If you spent two minutes with her... you would giggle at her determination.  Ain't nothin' gonna slow her down.)

For each time a little person passes in from of your eyes via TV, social media, internet... I am hoping the experience is positive and you smile.  Not because that individual is a little person... for a different reason.  Perhaps they are chasing a dream, or smiling themselves, or having fun or loving life.  To me, this is how we raise awareness.  We teach, we love, we show kindness, we lose the chip on our shoulder, we see the good in people, we work as a team.  Different but same.  Capable, loved, unique... just like you.

You.  You have been a part of this team for a year now (if not longer).  When you share the blog, share our story, share our photos... you are taking the turn as an advocate for Lilah and for dwarfism.  You may think nothing of it... but you are making a difference.  I tend to go to the extreme in cases like this and think, "What if everyone was doing that?  What if no one was doing that?  What kind of world would this be?"  If everyone was accepting differences, putting kindness first and focusing on good... people would be touched.  And the later... I shudder to think about that.  Reaching people, caring for people, loving people... that is the whole point.  (And check out my buddy's incredible website: Understanding Dwarfism... he has dedicated his whole life to raising awareness.  And, he's amazing.)

"But you can't change the world!!" What does it mean to change the world?  If I have affected someone, I have changed the world and I am good with that.  "But I don't always want to be an advocate!!" That is fine... to each their own.  I do always want to be an advocate.  It was a role that was dropped in my lap, one that I gladly accepted.  If I have the chance to teach, I will.  My daughter may not share that opinion... that is her choice and this is mine.  "Don't you get sick of people always asking you about her size?"  Nope.  That's because I have decided to not let it bother me.  She is small, that is a fact.  Sometimes people feel the need to tell you about your child.  And as weird as that is, I understand it.  "Why in raising awareness and starting this blog do you have to be so honest in telling how you thought initially about having a daughter with dwarfism?  Aren't you worried you will offend little people?"  Hmmmm.... the hard question.  It is never my intention to offend anyone, especially someone that is a part of an organization that has been so critical in my healing.  When I first wrote my initial blog posts about "finding out" I immediately called me new LP friends and seeked their understanding.  They did.  Why?  Because... this is a story with a beginning, a middle and someday an ending.  I started with the truth.  That's all I knew to do... I didn't sugar-coat it, I didn't exaggerate it.  I told it like it happened.  I am not proud of how I felt initially, but I am proud of how I have changed since those beginning days.  If I didn't tell you the whole story, how could anyone relate, how could I help anyone and how could anyone understand how these challenges can be overcome.  All I have is my story and I have a feeling that someday my daughter will be proud of me for sharing the whole truth so I could in turn help others. {Yes, these are all questions I am asked frequently... I am always welcome to answering questions.}

I am thankful in this month especially for our friends in the LP Community that are also doing their part to educate and share their stories.  I have absolutely loved it and I have learned so much.  And Courtney Simross... you are the wittiest person I have ever "met."  Love you girl!  To all of my fellow bloggers... thank you for being brave to share your story.  The teamwork in this community to raise awareness together is so beautiful... we are all here to celebrate our lives, our differences, our loves.

One Year Anniversary

I woke up this morning and I looked at the calendar on my phone.  I scrolled 12 times to last October and there it was.  THE doctor appointment.  There was nothing special about it.  It just said: Ultrasound  2:15.  My mind went back... back to that day.

Let me tell ya, it was already shaping up to be the worst day ever.  I took Clay to the doctor in the morning for a check-up.  As soon as I got into the car I felt a wave of nausea.  I drove twenty feet to the gas station where I couldn't even make it out of the car before I was getting sick.  And then I proceeded to get sick at the curve.  My dress was soaked.  I was a crying mess.  It wasn't 30 minutes later when Clay did the exact same thing.  Let's just say, I was already in survival mode that day.  Looking back... of course I was.  I am a very intuitive person.   I was four hours away from getting life-changing news.  I think part of me already knew and my sub-conscious was coming to the surface.  When my ultrasound that day took way too long and when the technician didn't say anything... I kind of had a sense of something.

And yet the words hit me like a freight train.

They knocked me off my feet.  And I can tell you that I left a part of myself on that doctor's office floor and if I ever returned to that room again, I think I would quietly shut the door and lose myself on that floor again.  I would cry for that part of me I left behind.  That girl was naive, but guarded.  Entitled while incomplete.  I feel sad for that girl for she didn't know what she had when she had it.  I wish I could have shaken her and said, "You have everything right in front of you to be happy-- truly happy." And when things did not go her way, she was devastated.  Let me tell you... I am so glad that part of me was left behind.  I got a second chance at my happiness.  The process was was ugly and forced and difficult. When I left that room, I was very much broken.  There was a gaping hole from the me that was gone...

A year has passed.  Today, I let myself become swallowed in emotion as I read and reread our first e-mails to friends and family, our letters to our children before Lilah's birth, our letter to new parents of a little one and Lilah's birth story.  There is still pain there for me.  Pain in remembering how it felt to hear those words.  Pain in the fear of the unknown.  Pain in the future suffering we did for her.  But mostly, I wince with pain and sorrow for the time where I didn't understand how wonderful this news was for our family.

My doctor said exactly a year ago today, "In one year, you are going to wish nothing was different."

Those words were empty to me then.  In my mind, they were borderline offensive.  "How is this guy going to tell me how to feel about this?"  I couldn't make sense of them and I certainly didn't believe him.  In hindsight, I imagine I thought, "Well, I suppose we will get use to the idea and this word will sting less and less each time we hear it."  I had NO idea exactly HOW much these words would be a positive influence on our lives.  At the time, I could have never imagined that.  What has unfolded in the last year has been truly astonishing and nothing short of a miracle.  How much we have changed, how other lives have been affected by this sweet girl, how many fabulous people we now have the pleasure to call friends, how she really is moving mountains.  It is unreal and everyday, I have moments where I am left in complete awe of the whole situation.  One year later... we can proudly (and loudly--we want to shout from the rooftops), "WE WISH NOTHING WAS DIFFERENT!"

I am giddy with life.  Seriously giggly and smiley and punch-drunk-love kind of giddy.  I am the happiest I have ever been.  From a year ago to being pushed off the edge into that dark ravine where I was scared out of my mind and hollering for help, to turning around and having the courage to take steps forward to start the journey of "different than expected," to learning how to be grateful for the journey and finding beauty in the growth along the way, to being so overwhelmingly thankful to God for having the opportunity to go on this journey in the first place.  There is so much peace in allowing Him to choose our path for us, accepting our role given to us by Him in this life and loving everything along the way.

At ten-months old Lilah is such a light in our eyes.  She is so perfect to us and we are beyond smitten with her.  If you were to meet her, first you would notice her eyes.  They are like reflecting pools.  You can see the world in her eyes; they are so deep, soulful and mesmerizing.  Next you would notice her smile.  You would think you were special because you made her light up and giggle and grin.  I would not tell you that she is like this to everyone.  And then you would notice her personality.  She has so much spunk and fire and ambition.  After being with her for a few minutes, you would already know that she is going to be a leader, do great things and go after what she wants.  She is getting ready to take her first steps and in the next couple of months we will get to witness her walking.  It's like she's saying to the world, "I got this... don't worry about me."

And while I think I should have been happy all along... it was really her that I needed to be complete.  We needed her to find ourselves and although we feel many steps closer to where we are going, we know we have much more in store for the future.  Our work is just beginning.

And to you... my family, my friends, my readers, my cheerleaders, my fellow-mamas, my lpa community, my hometown, my new town...you.  I think I shed some of my biggest tears for you today.  Why on earth you have embraced us like you have, I will never know.  The outpouring of love, the additions to our village, the safety net created... you are a part of that.  On days where you feel less than worthy...just remember how much of a difference you have made in our lives just by reaching out your arms.  You are important.  SO important to us.

I still try to take this one day at a time.  But, I don't fear the future anymore.  I look forward to it.  I have her.  I have them.  I have all I ever need.

God bless you and thank you for being a part of our story.  Just by reading you are helping our advocacy to spread awareness to dwarfism.  With October being Dwarfism Awareness Month, I will be talking a lot more about this topic coming up.  For now, we are grateful for our 365 days of growth and we look forward to celebrating with our hometown this weekend! XOXO 

Photography by http://www.michelletiekphotography.com/

Family Featured!

Our family is featured in the latest Fort Wayne Family Magazine!  Check it out...

http://issuu.com/kpcmedia/docs/family092013?e=4200578/4729411

Chasing Dreams...

It was like Christmas this past week when I got to open the boxes stuffed full of my childhood memories.  They have been dormant for over eight years and a part of me wondered if I had lost them all together.  They were found.  Thank God.

I have a memory like my father's.  I could tell you story after story after story from my earlier years.  And with each box, envelope, photo album and yearbook... I relived all of those wonderful moments one by one.

My husband was giggling at my high school grades... apparently he thought I was a better than a B-C student.  He laughed out loud at some of my final exam grades that showed up as D's and an F.  And then, there was my favorite report card where I crossed out all of my grades and gave myself all A's.  That's more like it (and just like me).  I explained to him that I wasn't very good at studying and that I struggled to see things the way everybody else did.  It made answering multiple choice questions difficult because I could probably come up with a creative answer to make all of the choices a possibility.  And that all makes sense now... because of what I found next...

The "your child may be hyper-active if..." questionnaire filled out by my teacher and my mom.  It was the first time I laid my eyes on it.  And it made me giggle.  Because while yes, I was squirrelly and always in motion and way too silly (and I probably do have some form of ADHD), all signs pointed to the one box my mom checked under the word "always"-- DAYDREAMS.

Bingo.  That pretty much sums me up.  I am a dreamer.
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It will be a year in October since we learned about Lilah's diagnosis.  I think about me a year ago.  Before I heard the news... carefree but restless, happy but unsatisfied, present but not fully there.  A little scattered, frustrated and on the side of pessimism for sure.

I woke up one morning in November... with Lilah's delivery only days away and I realized all the leaves from the trees were either brown or gone.  I had missed it-- the most amazing time of year where the bright colors contrast the blue/gray sky, where the leaves crunch under your feet with every step, where the wind plays with the air and brings in that distinct "fall" smell.  I had missed it all.  I was in a fog.  I was still wrapping my head around my new normal and I was so nervous for the upcoming birth.  Questions were filing my headspace and just repeating over and over again with no way to quiet them except to wait... time would tell.  Would she look like other newborns?  Would she have to have surgery immediately? Would we be able to hold her? Would people feel sorry for us? Would she pass all of her newborn screenings? Will everyone be excited? And the one that haunted me... Will she survive?

That thought kills me.  I didn't know her very well then.  She was my daughter and I loved her for her little movements inside of me and for what she was going to be.  But now looking back... I can't imagine life without her.  I am so glad I didn't have to have that thought for too long.  And I know mamas that were not as lucky as me and they had to face that question with a different answer than I got and thinking about that now is leaving me in tears.  My heart is absolutely breaking for those mamas.  I know I am the lucky one.  I had a slight inclining then, I know it now.

I have learned so much this past year.  About dwarfism, advocacy, the special needs community, strangers ready to life others up and how to be there for others.  And a whole lot about me and life.  
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Yes, I am a dreamer... and you know I will encourage my children to be the same.  I want to always lead by example and teach my babies that life is an adventure: you make it what you want.  And so, I am actively chasing my own dreams... (that nagging thought that hasn't gone away for 13 years... the one that I can't go a few minutes without thinking about... that one thing that I am super passionate about.)  So watch me kiddos go after my dream and then someday I will help you do the same.

I don't won't to ever wake up knowing I missed the leaves turning ever again.  I have learned that life is so precious, love what you have and there is no time like the present.   Dream big my little ones (and big ones too.)  Now go and make it happen. XOXO