Tuesday, January 29, 2013

An Ode to My Dreamer

And so it began...
A little girl with a dream...
And with a mama behind her,
It would always seem 
That a smile and a wink
Could make the world go round. 
And I was ready and willing
And I would hit the ground...
Running and running
As fast as I could. 
Living the good life
Because life should be good.

But sometimes it isn't
And I want you to know
That it may take more than a wink
To make the world go.
Yes, life needs YOU
To always rise above
Anything that's below you
And absent of love.

And as you dream your
Big dream my little one 
Please wish for anything
Under the sun.

Set your sights high
And your worries low
And get your movin' on
With your to and your fro.
And reach your hands
Way up in the sky
And maybe... just maybe,
You'll learn how to fly.

Because all good things
Are wild and free
And it is up to you
Who you want to be.

But if you try and you try
And you're still on the ground,
And you feel sad and scared
And trapped all around.
Know it's ok because
This is your story too.
This is where you learn and you grow
And you finally break through.

And you'll find a way there--
To where you are going
Even if it's around and about
And with the wind blowing.

You'll land in the spot
That is just right for you--
A wink and a smile
And a little straightening too.
Then off to the next
And the next after that
Leaving the ney-sayers
Right where they're at.

So swim in the sunshine
And bask in the sea
And enjoy every second
That's meant to be.

And when you arrive at your dream,
Look it straight in the face
And be thankful it's a journey
And not a race.
Because the true gift, my dear,
Is who you've become.
My dreamer, my love....
My little one.

For it was your mama's dream...
A long time ago
To have you in my life
And you should always know...

Dreams do come true;
You remind me every day
That a wink and a smile
Can go a long way.
You are proof that dreams
Are worth fighting for.
Remember that always
And forever more.

*Dream images courtesy Pinterest. 

Wednesday, January 23, 2013

Achondroplasia 101

I have known for a long time that I wanted to write this blog post.

It is afterall, my intention to educate as many as possible about Lilah's condition.  I am sure that there are lots of questions out there... I think back to the many questions that were going through my mind over and over again when I heard those fateful words... "your daughter"... "dwarfism."

I left the doctor's office that day knowing very little about dwarfism.  We went through our lists of questions with our doctors... but they weren't experts and they didn't know the answers.  We made appointments with geneticists and the waiting game began.  It would be several weeks before those questions would get answered.  In the meantime, I took to the internet, but soon realized, I could only take it in small doses.  It was too scary.  I couldn't allow myself to dive into the world of the unedited.

So here is my attempt (and this should also be my disclaimer) to educate about Lilah's condition.  I am at the beginning stages of learning and I am by no means an expert.  If you find some information to be incorrect, please, feel free to correct me or add to what I have written.  I thought it would be the most helpful to start with the questions I had immediately.

What is Lilah's condition called?


I first heard this word from my doctor.  He told me this was the actual term referring to my daughter's type of dwarfism.  It took me several days to pronounce and even longer to spell.  I have since learned that this is the most common type of dwarfism.

What are the physical characteristics of achondroplasia?
*shortened limbs (especially the upper arm and thigh bones)
*may have frontal embossing (enlarged forehead and head)
*may have bowed legs
*may have a flattened bridge at the nose
*short-statured (4' 1" is the average height for a female with achondroplasia)
*hands may have a three-pronged appearance

What are some potential complications with achondroplasia?
*low muscle tone
*acid reflux
*sleep apnea
*hydrocephalus (water on the brain)
*spinal cord compression

And while Lilah had a great first check-up at birth, she has since been diagnosed with moderate sleep apnea.  We are also treating her for acid reflux as a preventative measure since we (including the doctor) have reason to believe she has this too.

What causes achondroplasia?
In our case, since Corey and I are 'average-height,' upon conception a spontaneous mutation or misspelling in the gene occurred.  This 'misspelling' is then repeated over and over again as the gene divides.  The chances of two 'average-height' adults having a child with achondroplasia is about 1 in 25,000 births.  Now if Lilah chooses to have children, her odds of having a child with achondroplasia are much, much more likely.

And as a parent to a child with achondroplasia, this is what I want you to know...

Yes, Lilah has dwarfism.  Yes, she will look physically different.  Yes, she may have some medical complications in her life.

But really... she's small, that's all.

Just in her 10 weeks, I am learning there is so much more to Lilah than her diagnosis.  She loves to coo and sings sweet cooing songs just like a baby bird at your window.  She loves to cuddle and snuggle and burrow her face in a fuzzy blanket.  She loves watching her big brother dance and prance all around her just trying to get her attention.  She has learned to smile when you become the biggest ninny making all sorts of faces and noises.  She will watch you come and go and when you are gone too long, she will let you know!

My hope is to educate and create advocates for not only dwarfism, but for all differences that our children experience.  Let's teach them to appreciate and celebrate rather than discriminate.  It starts with us as parents at home and spreads to our friends, family and communities.  Together, we can make a difference and create a better world for our children.  

To learn more about achondroplasia and dwarfism please visit: http://www.lpaonline.org/

Please feel free to comment below and ask any more questions that you may have or to add to this post.  I would also love to hear about your experiences with differences, dwarfism or anything in between that you see fit.

~Leslie xoxo

Tuesday, January 15, 2013

A Total Defeat... With a Cherry on Top

That was today.  A TOTAL defeat... a beatdown, a tail-smacking, an embarrassment to the team.  The final score... children 42 me 7.  It was like I was never even in the game from the beginning and even though the final score wasn't too bad, it was never even close.

And in life, we win some and we lose some.  And I am glad I know that there is a balance.  And there is always a silver lining... if you look for it.

But today... oh today.  Coming off a night of only two hours of sleep.  (Thank you honey for taking her for two hours while I slept.)  Waking up with sand in my eyes... scratchy and so heavy.  Three timeouts before nap time.  Banging on daddy's work door.  Diapers that weren't working.  A red-faced mama carrying a temper-tantruming-two-year-old by the arm through storytime at the library also while holding a madder-than-a-hornet-sister in the other arm all while the story-teller interrupts storytime to say, "Wow.  You have two wild ones don't ya?"  Why yes, it appears I do.

And just when I put my head in my hands and wave the white flag... this happens:

Clay says, "I love you mommy," out of nowhere.  He pitter-patters down the hallway excited for his bath.  He comes over and loves all over his baby sister and says, "She's so cute."

Lilah turns off her fussiness like a switch and coos and googoogagas til her face erupts in a smile.  We snuggle as I rock her in the new rocking chair, her eyelids getting heavy, heavier... asleep.

Corey has hot cocca waiting with extra whip cream and a bath.  A bath lined in candles that's way too hot with way more bubbles than necessary... just the way I like it.

My mom calls and says she's coming from Thursday to Monday just to "bring in the reinforcements."

My sister-in-law calmly lets me know that I am a good mama and she tells me a story similar to my day.

It was... a total defeat... with a cherry on top.  And that cherry... it reminds me that even when we lose we don't ever really lose.  This family... this life... it is a privilege.  These kiddos... they are what I always wanted and then some.  These tricky days (or moments in these days to be more accurate), they make me stronger as a mama.  They make me appreciate the simple things... those moments I replay from the day in my mind before I go to bed each night.  The smiles, the giggles, the unexpected words, the new discovery... and the love.  And it is the love which overcomes any obstacle that I could ever encounter in a day.

So I will take my defeat... chalk it up to better luck next time (meaning tomorrow), laugh it off and know I got it good.  Sooooo good.  I will go to bed thankful for this smile on my face and the light in my heart.  I will hug my little ones tight and rejoice that they are here and I am called their mom.  Life is sweet and always enjoyed more... with a cherry on top.          

Tuesday, January 8, 2013

Resolutions/ Schmezolutions...

...I hate resolutions.

OK, this wasn't always the case.  Like ever other year, I started thinking about my resolutions over the holidays.  I went into my notes on my smartphone to type them up when I found a note titled Resolutions 2012.  Hmmmm.... last year's resolutions.  I was excited to revisit this list and see where I was a year ago versus where I am now.  And, what I got was a total bummer.  It was the same list as this year.  THE SAME LIST!  Meaning... I made no progress last year according to myself.  How could I if I had the same resolutions?  That's when I decided... resolutions are for the birds and I would be first in line to vote this age-old tradition out of existence.

You know what I mean, right?  How many years can they feature the same resolutions on the Today Show... "lose weight," "eat healthy," "work-out," "make time for my family/spouse," "be nice."  Over and over and over again.  The thing is... if we have to repeat the same resolutions from the year before... something isn't working.  Can I get an Amen?

Why?  Why are our resolutions not working?  Why are these empty words floating around in our heads hoping to make this the best year yet?  Why are we no better off a year later and yet we repeat the same broken process?

This is the formula I came up with...

(Unwillingness to change [aka stubbornness]) x (empty promises/false hope) = resolutions

Here are the problems with resolutions... they require one to change and in order to change permanently, one must take action.  In order to take action, one must have a plan.  In order to have a plan, one must set goals.

And so this year, I am writing off resolutions for good and I am replacing them with good ol' fashioned goals.  Because my stubbornness seems to be a bit on the overloaded side... (yes, I admit), it is imperative for me to take serious action to get to where I want to be.  I am not going to look back on 2013 as a year of no progress.  I will not settle for that.  Not again.

But a lot happened in 2012 that shook me to my core and isn't that where we take a good look at ourselves in the mirror and think, "Hmmmmm... do I like who is looking back at me?"  I have done a lot of looking in the mirror in the past few months wondering that very question.  Truth is, the answer for me is no.  And this is a big admission from the gal who is always right.  From the gal who can do it better than anyone.  From the gal who has it all together.  Yes, me.  I am the one who hears, "I'm sorry," not the one who delivers it.  I am the one who does it correctly the first time, of course.  I am the one who knows it all.  Yet, it is me that's the problem.  (And my Type A personality.)  Am I being too critical?  Yes.  It's about time.

But CHANGE is a-comin' because I already told you.  I will not settle.  Not again.  And this year is going to be different because my life is different.  My outlook is different.  My experiences are different.

You may recall when I first described the journey of learning about little Lilah's diagnosis of dwarfism, I compared it to being on a ravine and getting pushed over the edge into the wild jungle below.  I could see the ravine on the other side and I knew that was where I wanted to be, but I had to get there.  The learning process, the change inside me, the growing of the character takes place in this jungle.  That's where I am and that is where I have been for the past few months.  And it's hard... and wonderful... and scary... and freeing.

In this jungle, you see the good and the bad.  Somedays all I see are exotic flowers every where I turn.  I see bright colors and God's beauty and creativity in every step.  Somedays are filled with optimism and joy and gratitude that I was chosen to walk through this jungle.  Somedays I cannot believe how lucky I am.  Other days, I see things I don't want to see... scary monsters show their faces and I have to go to battle.  I feel this way when I dig deep and realize something about myself that isn't pretty.  When harboring old grudges or feelings or certain thoughts or insecurities come out, I have to acknowledge them and battle them.  But this is why this journey is just that.  It doesn't happen overnight and I am committed to being a better person for my family, for my Lilah, for her world.  Change is just a word.  But it is a word that I don't take lightly.  I am willing to fight the fight within myself to let go, grow, open my mind, and see things with clarity from a pure heart.

And with every goal that has ever been fulfilled, it started with the understanding of HOW.  How am I going to get there?  How am I going to make these goals work for me?  How am I going to put them into practice until they have changed me for good?

I am a visual person.  I need visuals and lots of them.  I need daily, hourly, minutely reminders to stay on track.  To fight those battles and win them.  To keep going on the path looking for those flowers and bright colors.  Luckily, I have my visuals.  I have my son who makes me want to fight every fight just to be that much more of a role model for him.  I have my husband who does one million little things in a day just for the chance it might be rewarded with a smile.  I have my daughter who makes me want to  burn a path within our society for her to follow.  And when I look at them, I am going to understand the importance of change and me becoming better for them is my choice... and oh how they are worth it.  And their life will be better because I am better.

This is the year of Change.  And hope, and love and acceptance and gratitude.  This is the year I start being the change I want to see in the world.  And I will begin with one step at a time, one day at a time.  And I will live life on purpose and with great purpose.

Out with the resolutions... and you can take your Auld Lang Syne with you.  Never could pronounce that song anyway.  In with a fresh start, a new beginning, a positive outlook and most importantly a willingness to change and goals to go along with it.