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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?

a·chon·dro·pla·sia  

/āˌkändrəˈplāZH(ē)ə/ 
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.


Monday, December 31, 2012

Happenings...

Check out our magazine debut at:





Our Christmas Card/Announcement 2012




Happy New Year!




Monday, December 10, 2012

And... Let the Chaos Begin...

It was my first attempt to leave the house on my own... with my two children.  A feat I had dreaded as soon as I was pregnant with #2.  The thought that kept running through my head: how in the world would I be able to handle two children?  It was something I knew would be difficult, something I knew would take lots of strategic planning and teamwork and something I was so not ready to wrap my head around.  And then... enter the news of baby #2 having dwarfism.  So interesting how all of that changed.  I no longer had the head space to worry about how I would handle two children.  My fears shifted to much more serious, long-term worries.  I remember a close friend asking me after we received our baby's diagnosis, "Are you ready for the day-to-day with two children?"  I told her that I hadn't even been able to think about it.  And, that I couldn't go there.  Not yet.

As we all know, this is a journey for me and my family.  I warned you... there would be lots of changes going down... lots of growing, lots of learning, lots to be humble about.  I realized before Lilah was even born, that we could get through this and everything else that is thrown our way if we just take it one day at a time.  If I try to look at the long-term/big picture, I get overwhelmed.  But, I can handle one day.  And then, flash-forward a month and I am knee-deep and right in the thick of day-to-day with two.  It is a blur... filled with lots of happy moments and some I am glad are behind me!  Sleepy eyes and feedings and Mickey Mouse and snacks and dirty diapers.  Then push the repeat button every three hours.  But leaving the house... all three of us?  Hmmm... it seemed my fears were about to be confronted.



So there I go... me and the kiddos.  I painstakingly review every detail before I leave the house.   Wet wipes... check.  Two diaper sizes... check.  Car keys... check.  Water, blankies, burp cloths, snacks, coats, wallet, sleep sheep, paci, phone... check, check, check.  I put Clay in the car seat, run and grab the diaper bag and put that in the car.  Then comes Lilah.  And off we go to have a joyous morning at our library story time that we participate in every week.

And joyous it was.  Clay was an angel as he sat quietly with the other twenty children listening intently to the story.  Lilah lay asleep in my arms, so peaceful.  Craft time went off without a hitch as Clay followed directions and made he cutest santa hat.  We proceeded to pick out our books and we walked hand in hand to the counter to check out our books.  The librarian commented on how well-behaved my kiddos were and I politely smiled and said, "I know."  It was joyous, our little trip to the library.

Haha... I almost had ya.  Yeah, that never happened.  I wrote that dreaming about what it would have been like if it had gone well... my first trip out alone.  But, it went more like this: We arrive at the library with an insane amount of stuff like we are actually staying the night.  A stroller with car seat, big diaper bag, my handbag, a duffel bag of library books, a toddler and a newborn.  Everyone keeps a good 20 feet from us as we maneuver through the library.  We head over to the book return where you can fit about three books in the slot at the same time.  I was thinking about the weeks earlier when I was holding Clay and we were putting the books in together--counting, laughing, smiling.  And now, I was shoving the books in as fast as they would go as Lilah realized we stopped moving and decides the library is way too quiet.  She starts crying and I try shoving the books in faster as a line forms behind me.  Of course.  I turn around after every shove-in to see if Clay is still within sight.  Finally done.  I get Lilah out of the car seat and start the bouncy-walk... the only thing that keeps her cries at a minimum.  With a, "Come on Clay," every 5 seconds, me pushing this bus-of-a-stroller and doing a ridiculous bouncy-walk, we make our way to the children's section.


Story time begins and Lilah decides now is not a good time to sleep although I begged to differ.  I choose a spot in the back so I could keep the bounce going.  I reach into my diaper bag for Lilah's bottle and I pull out one that had to be in there for at least a week.  Nice.  That will smell good when I dump it in the sink when I get home.  I find the right bottle and she doesn't want a bottle.  So, she keeps crying and my bounce gets deeper.  I am now doing dips.  All twenty children all around Clay's age of two, sit and listen to the story as Clay proceeds to grab my skirt and pretends that together, we are a human bell as he shouts,"Ding, ding, ding!"  I grab him with my one free hand as he falls to a noodle on the floor pitchin' a fit on the way down.  Grandma Mary, the story time leader, is saying her shhhhhhhh's to all the kids... I mean to my kid.  Since Clay is already on the floor, he thinks it would be fun to rub his head all along the carpet similar to that of a dog trying to itch an unreachable itchy spot.  Oh joy.

At craft time, we spent a record 3 minutes on the santa hat.  And when I say we... I mean me.  I did the craft quickly to get us out the door and to prevent any further embarrassment.  Clay still managed to lick the glue stick in the 3 minutes we were at the craft table.  And, since I was hurrying, I didn't follow directions and the hat was way too small to fit on Clay's head.  Oh well.  Off to check out our books.  I put Lilah in her car seat which she loudly protests as I am putting her straps on.  Her protests turn into an all-out wail and the librarian checking out our books gets really uncomfortable.  She says, "Oh no!  Get her out.  She hates that."  I reply, "Yes, I know... but I have to strap her into her car seat.  We are going out to the car and it's raining."  She continues, "Let me hold her.  She is so mad."  And I smile, grab my books and move my caravan to the door.

I get home and Corey says, "How did it go?"  "We survived," I said.  And survive we did.  And tomorrow, we will pack up, head to the library and do it all over again.  And one of these times, it will get easier.  That... or we will be uninvited to story time.



Crazy as it sounds, I thought I would give it another go.  Feeling pretty good, I had the optimistic attitude of, "I got this... the initial outing is behind us and now I can do it."  So, I took the kids to a store where I wanted to pick up some more toys for Clay's birthday party.  It went well.  I was pleased.  As we leave the store, I am carrying Lilah in my arms and pushing the cart to our car which is parked right out front.  As I go to put Lilah in the car first, Clay takes over the cart and pushes it off the curb where it proceeds to fall on him knocking him and the contents of the cart into a mud puddle.  I throw open the passenger car door and lay Lilah down on the seat.  I go back, pick up Clay and put him in his car seat.  I then realize he is covered in mud, so I take off his shoes, fish around for wet wipes in the diaper bag and clean him and the seat which now has mud all over it.  I look back and a nice mom with her two angelic daughters are helping pick up the cart and the toys from the mud puddle.  I say, "Oh, thank you!" And she says, "Weren't you at the Fisher's Library story time a couple of days ago?"  Crickets.  My head was saying, "Nope.  Not us."  But I squeaked out a, "Yes.  That was us."

Yes, Lilah has taught me lots.  She has taught me that fears are just that.  A word that is sometimes scarier than the connotation attached.  When you actually think about the worst that can happen if the fears become a reality, they often times aren't as scary as we make them out to be.  I admit... it wasn't pretty... me and the kiddos out in the public for all to enjoy.  But, nothing bad happened and after all, we did it.  All by ourselves.  And I have to say, there is some satisfaction in that.  Another thing Lilah has taught me... a situation doesn't have to be perfect, pretty or even without a tear or two to be successful.  We accomplished what we set out to do and sometimes that is enough.  What is enough for us... is enough and we can be proud of that.  Looking back, there were some shining moments in those experiences.  The "old me" would have let the bad define my day.  But, why not focus on those shining moments throughout the day instead of getting caught up in the what didn't go right?

See, I am learning.  One day at a time.  And we will get to making situations pretty... and if not, dang-it, we are going to have fun trying!



  

Sunday, December 2, 2012

The Two Sides of Acceptance

Acceptance... a word I have thought a lot about in the last two months.  What does this word really mean?  Isn't it the root of what everyone wants in this lifetime... to be accepted?  To be accepted by strangers, friends, parents, your spouse, and yourself.  Isn't that why we do the things we do?  It's one thing to say, "I don't care what others think."  I have heard myself saying this over and over lately.  But... is there any truth to that?  Do I really not care?  Hmmmmm... thick skin is what I want, but I know deep down that I care.  I care what others think.  I care how I am treated by others.  I ultimately want to be accepted.

I have had two extreme experiences with this word acceptance... all in the week Lilah was born.  Both occurring by chance.  Both rocking me to my core.  Both teaching me about this word.


Three days before my scheduled C-section and my dear sister-in-law baulked at the doctors' orders for no nail polish in the surgery room and scheduled pedicures anyway.  She knew exactly what I needed, what I wanted... to be pampered.  As we made small talk with the ladies each attending to our toes, the conversation moved to my pregnancy and talk of how small I was considering I was giving birth in the next few days.  I got this a lot with both of my pregnancies and I just shyly smiled and said, "Yeah, I know."  The lady working on my sister-in-law says, "My daughter was big.  9 pounds and something-or-other ounces and she had a huge head."  The way she said it made us giggle... I guess it was not what we were expecting her to say.  She went on to talk about her theories as to why she thought her daughter has a large head.  The gal working on my toes says, "It's like midgets.  They have huge heads."  Then a pause.  And then, "I mean little people.  They don't like to be called midgets."

There it was... me, my child,... not being accepted.  All of the air felt as though it were sucked out of the room.  I felt my cheeks get hot and my mind spinning and spinning.  The irony... it just about killed me.  This stranger had no way of knowing that in three days I was going to give birth to my very own little person.  The fact that she even said that caught me so off guard I don't think I said anything for the next ten minutes.  I just kept repeating what she said in my mind thinking, "Did that really just happen?"  At first I was hurt.  I was hurt that she thought that was funny.  I was hurt that I didn't say anything in response.  And I was hurt thinking about how I would feel if she had said that to my daughter.  But then, I felt myself smiling.  It made me feel vindicated for putting my story out there for all to hear and know.  I just thought, "See... this is why I want everyone to hear about Lilah and know that her story is one of love... not hate, not ignorance, not unnecessary words."  There are people out there that need to hear my message and understand that words can hurt.  Understand that differences can and should be celebrated.  It's ok if we are not all the same and I happen to believe that being different is a good thing.  And then there are people out there that already know this.  And for those people, I just hope my story offers a smile, inspiration and a message of love.

{For the record... the word midget is inappropriate and is considered a derogatory term.  I apologize for using this word in my blog.  But, for me the truth has to be told as it is and by skirting around this word, I am not teaching anyone what is okay and what is not okay.  Therefore, I used this word in the context it was said, as unfortunate as it was.}

And then... the day of Lilah's birth... as I am being wheeled into my recovery room straight from surgery, flowers are brought in right behind me.  Corey reads the card... they are from our local chapter of the LPA (Little People of America).  When we first received news of Lilah's diagnosis of dwarfism, my mother and my California sister-in-law reached out to the local chapter of the LPA for support.  My family knew we would need to be corralled by another community-- one of understanding, one of familiarity.... one of acceptance.  But it was the acceptance of the individuals we have been fortunate enough to meet/get to know over the last month that blew me away.  See, the LPA is a group of people just like any other group of people formed by commonalities.  They didn't have the luxury of choosing us to be in their group.  When we contacted them, they didn't ask us questions judging us and deciding whether of not we would be a good fit.  They didn't meet us in person, ask about our backgrounds/ethnicities/occupations.  They embraced us wholeheartedly in a way I have never seen and they genuinely offered their support, love... and acceptance.  I am so humbled by these individuals and the LPA and their example of unconditional love.

Both of these experiences have made me realize the depths of this word acceptance.  It has made me understand what it feels like to be accepted and what it feels like not to be accepted.  And for the same reason.

It amazes me that this is a choice that we all make-how we treat/react to others, how we make others feel.  I have learned that even strangers and words from strangers can make an impression and a long-lasting impression at that.  It is important for me to be an advocate for the LPA, little people and for my daughter, Lilah.  Someday, strangers' words and stares will hurt her and in turn hurt me, too.  If by sharing my story affects even one person to be more open, loving, accepting... then it is worth it for me.    But this can be a lesson to all of us.  We have all heard comments about race, cognitive abilities, ethnicities, physical appearances and so on.  I challenge you... next time you hear someone being put down, a derogatory comment,  or stereotyping of a group of people... stand up and say something.  When I have the chance again, I promise, I will stand up for what I believe and protect those I love.    

And at the same time... words can do so much good if we choose them wisely.  From my experience with the individuals that have reached out to us in the last few months, I have learned to be more compassionate for others, the way compassion has been shown to me.  I have learned to go out of your way for those you love AND for those you are yet to love.  I have learned that its what's in your heart that matters.  Thank you to the LPA, the Rollins family, Mama Gray and family, the Spears Family, Hidi Gardener, Leslie Walden, Marcia Bagwell, Jamie Nading, and Sandy Becker for reassuring me, guiding me along the way and being a hand to hold.  You have all been incredible teachers and I cannot thank you enough for your support, friendship, love and... acceptance.