Wednesday, November 21, 2012

The Birth of Lilah Rose

I gingerly tiptoed on shaky legs into a room with bright lights, beeping, masked doctors, verbal instructions, medical equipment and my mind swirling around and around.   I saw a familiar face in my doctor and I suddenly felt better.  He braced my shoulders for the pain of the spinal block and told me what he has told me everyday I have seen him since we decided to do the Cesarian, "This is going to be fun."  Just as the numbness started creeping up my legs, the nervousness of what's to come also set in and I felt my fingers begin to tremble.  As I laid down, I moved my eyes from person to person in the room wondering what they know, how they are feeling, what they are anticipating.  Is this just another C-section for them or are they nervous too?  I know they have been prepped by our situation, but you would never know it.  They seemed ready and I suppose that was their job.  The curtain came up and the only person that came into view was my doctor.  I looked at him and I looked at the empty baby warmer to my left.  It was all I could see.  I knew a baby would be placed here very soon... our baby.

"I know you do this all the time and you deliver lots of babies.  But I want you to remember... her."  The words barely came out of my mouth.  He looked at me with the most sincere eyes and said, "Oh I will.  I definitely will."

Finally, for what seemed like forever, a warm hand held onto mine as I saw Corey slip into the chair next to me.  There... my rock, my lifeline, my everything... was just a squeeze away.  And I felt myself squeezing his hand over and over just to make sure it was real and he was really there.   I leaned over to him and said, "Did you say one last prayer yet?"  His eyes looked right through me, into my soul.  It was the kind of look I could never forget.  One that told me that we were in this together and forever no matter what.  And he said, "I did."

Knowing we were just minutes away from getting started, the anesthesiologist was whispering to me over my shoulder now and throughout the entire experience.  The man whom I met just an hour before became the man without a face.  I never saw him during the surgery, but I talked to him more than anyone as he kept my sensations and pain at bay.  I remember my eyes beginning to dart, my face starting to wince and Corey become concerned out of the corner of my eye as he watched my expressions twist and contort.  Was it painful?  The most painful thing was the fear and it could have killed me if I let it creep up my neck.  But the only thing I ever know how to do is remain calm.  And that's what I did.

I thought back to the beginning of my day when the hourly countdown began.  The surreal way that I woke up the same as any other day yet with an anxious knot in my stomach knowing what was to come.  I relived the season's first snowfall that occurred just hours before as the large, wispy flakes quietly fell from the sky.  It was such a tangible reminder of everyone's love and grace that has fallen upon us in the last month.  It was the reminder I needed to build my confidence and that was all I could do to prepare for this moment.

And it came so much sooner than I was ready for.

I believe that when we look back at our lives, our thoughts are remembered by a series of specific moments-- those slices of time that seemed to defy reason.  Moments that lasted just another couple of seconds like any other moment in time, yet they became frozen... and it leaves me wondering... how could I have had so many thoughts running through my mind in that short amount of time?  It just isn't possible.  How did time revert to slow-motion and wait for me to understand and make sense of it all?  It was a moment that you rerun in your mind over and over from every different angle that you never saw... only imagined.

All I heard was a word, that isn't even a word.  It was more like a sound.  But, I would argue with Webster's Dictionary here, because with this sound, I knew she was here.  And it was the beginning of a long chain of events that all went in the same direction.  Coming from the assisting doctor, I heard a woman's voice and one of the sweetest sounds I have ever heard, "Awwwwwww."

It was here when the new chapter began... "The Birth of Lilah Rose."

The next sound I heard was the sound of our baby... and a sound that was equally as sweet.  Clay was quiet as a mouse when he was born but she wailed after her first few breaths of air as the doctor held her up for us to briefly see.  It was a flash and all I remember was lips and a curled up baby.  She was quickly whisked into the baby warmer and my eyes followed her every step of the way.  Where I thought I would see her, instead I saw a team of nurses and doctors poking, prodding, squeezing and making her scream even louder.  And we waited.  Waited for that sign of hope.  That sign of good news.  And if it was good news, I wanted it immediately.  If it was bad news, I never wanted to hear the words.

I was retelling these moments to my mom and I said something to her that I realized days later... never happened.  It was physically impossible.  But it was a part of my story I was telling.  And, I was so curious how this became a part of my story, when it wasn't true.   I told her that I saw the nurses and doctors smiling, and I knew everything was going to be okay.  But the masks... they were all wearing masks.  I could hardly see their faces.  I certainly never saw them smiling.  When I realized this I told my mom... and her face softened and she said, "Maybe it wasn't the nurses that were smiling... maybe it was angels in that room with you that were smiling."  She was right.  There was smiling.  There was calm amidst the chaos.  There was peace and there was so much joy.  God was there and with Him, He brought His army.  And just like at the hospital when they play a soft lullaby when each baby is born, I believe he signaled to heaven for the trumpets to begin their welcoming song, just for her.

I heard my own voice call out to the nurses, "How much does she weigh?"  I figured if her weight was good... she might be able to escape the NICU.  Maybe.  Corey and I gave it a 80% chance that she would spend her first moments, hours and even days away from us in this scary place where our naked baby would be hooked up to every machine possible.  I knew the NICU was a good place for our baby to be if that was what she needed... but I also felt like it would take every ounce of my will power to not rip her away from the wires and run away with her in my arms shielding her from any pain.  The nurses surprised me and called back, "How much do you think?"  Corey and I looked at each other and we muttered a hopeful, "5 pounds, 2 ounces?"  They shocked us again with an astounding, "5 pounds 14 ounces!"  My first thought... the same as Clay.  THE SAME AS CLAY!  Oh my goodness, how can this be?  It was my first deep breath where I let go of some of the fear.

The room started shifting, spinning and I felt myself beginning to fade.  I told the anesthesiologist that I was getting dizzy.  I could hear Corey calling my name, squeezing my hand trying to bring me back into the moment.  I looked up to the ceiling and had to close my eyes to prevent myself from going black.  I shook my head and opened my eyes and forced them back to the baby warmer.  I still couldn't see my baby and I was trying to crane my neck so I could.  Right in front of my face appeared a doctor seemingly out of nowhere.  She startled me and I could feel myself trying to focus on her.  In this moment, I thought about her face... how kind it was and how I had never seen her before.  I thought about how she looked to me like the little old granny in The Napping House, a book Clay and I read almost every night.  In the calmest and smoothest voice possible, she slowly said, "I am the neonatologist and at this time, I think everything with your daughter looks great and she will not have to go to the NICU."

Tears.  Uncontrollable tears that streaked down my face.  When there wasn't anything she could say that would make things any better, she did.  "I am going to bring her over for you to hold her."  So many questions, so many prayers.  I felt the answers were starting to be revealed in this single moment.  I could feel myself let go of that second deep breath that released even more fear.  I knew there were lots of tests to go, but I couldn't have been happier in that moment.

Our baby was placed in Corey's arms and his face lit up like I have only seen once before.  Getting to witness this meeting of a daddy and his baby girl was one of the most amazing things I have ever seen.  The love, the bond, the emotion... it was so overwhelming.  And then I got to see her... really see her for the first time.  There she was... our baby girl.  The one who had already changed me.  The one who made me a fighter, a dreamer, an optimist and an advocate.  She was the one who touched people's hearts and already made them love her.  She was here... and in daddy's arms... ready to take on the world.  Oh... and she was perfect.

Everything from here went on like a blurry storybook.  I am not sure I really took my eyes off of her to notice what was going on around me.  I was in love... and that giddy love would put anyone into a foggy state-of-mind.  I remember my thoughts went immediately to our families as soon as we were moved to the recovery room.  Corey got the pleasure to announce to them the news of her arrival and the miracle that we had just witnessed.  I could only imagine their expressions, their joy, their tears, their relief.  I pictured an emotional Pawpaw overcome with the news and a smiling Nana that was jumping with pure happiness.  I imagined a Grammie and Grampie that hugged their son so tight that words didn't even need to be spoken.  It was right then and there where she went from being "baby girl" to... Lilah Rose.

There were so many moments that followed in that short time that were just unbelievable to me.  I wasn't even anticipating having Lilah with me for any of these moments, and then to get to experience them as a family... it just took my breath away.  Getting to nurse Lilah, watching her first bath, the nurses continuing to give us good reports one after another... it was better than amazing.  Our families flooded into our room where they brought with them so much light and happiness and pure excitement.  It was Clay who had my attention as I saw him lay eyes on his baby sister for the first time.  "Baby sister," I could hear him saying over and over.  My heart was singing... it was hard to not flash forward time and picture the two of them, hand in hand... walking in life... side by side.  He loved her and I knew this when I saw his face.  He didn't care anything about what had happened the previous six weeks.  Our news, our sadness, our journey, our hopefulness, our story.  His story was just about love and that was it.  He loved her and it would always be that way.  It was the first time I saw him as big brother and the thought alone made my heart melt.

The next few days were filled with an outpouring from "our village" extending their love, congratulations and enthusiasm.  These days were also marked by more and more testing as Lilah was constantly whisked away even into the wee hours of the night for a skeletal survey, an MRI, a car seat sleep apnea test among the other testing that newborns receive.  We were so thrilled that with each test, came good news until all of the fear had finally dissipated.  And when our geneticist told us that Lilah looked great and he didn't foresee any additional problems, we were once again reminded of our little fighter-of-a-daughter.   She was defying all odds and blazing her own path.   Just like we knew she would.

And it was official... a family of four.  And that is what we are.  We have overcome a lot of obstacles in the past couple of months.  From the moment where we learned Lilah would be born with dwarfism to the present where we are beyond words and overjoyed.  What a quick journey of growth, faith and love we have experienced thus far.  And oh so much further we have to go.  We are not done learning, changing and teaching.  In fact, we have just begun.  The differences we see in ourselves have been so dramatic and life-changing, we can't help but to share our story with the world.  Because perhaps, our story can touch lives, and perhaps little Lilah can capture your heart.  Now and for always.

Monday, November 12, 2012

Baby's Eve

I was in my bathtub surrounded by bubbles and I looked down and saw my baby bump.  There we were, just me and her.  No doctors, no chaos, no answers, no news.  Just her little arms and legs poking back at me as if to say hello.  She was warm and safe in her little home that she had made for nine months.  Even though my belly looked big, I know it was actually small relatively speaking.  I was only measuring 32 weeks pregnant with 6 days til my due date.  Just a reminder of how small she actually is.  With emotions on high alert and worries running through my veins, I was reveling in this calm moment where it was just the two of us.   Where everything was okay.

Tomorrow is her birthday.  11-12-12.  Have you ever been on the verge of something big, something HUGE happening where you knew the exact moment in time when it was going to happen?  The only other time in my life when I felt very nervous, anxious and excited was my wedding day.  I knew that day was a forever day.  I know tomorrow and what we will learn tomorrow is a forever day too.  It is so surreal... waking up in the morning like a normal day... and then right on time, she shows up to her birthday party at 4:30PM.  It is then and there we get to meet our daughter.  Will we get a good glimpse of her?  Will we get to hold her?  Will there be lots of doctors working quickly and rushing her to the NICU?  Will she be placed in our arms with smiles all around?  I don't know.  And not knowing is where the anxious emotion comes into play.

Although many have prayed for God to give this little girl a miracle and have her arms and legs miraculously be average length... I can say that I have not prayed for that.  I don't need to pray for that.  I believe God is capable of miracles, but one is not needed tomorrow for that purpose.  I think she IS the miracle.  And I have been reserving my prayers for a healthy baby with achondroplasia.  Yes, it is true that various complications come with this diagnosis.  We are aware of these complications and awaiting any news tomorrow and in the next few days that will indicate the level of these complications.  Several experts (including geneticists, neonatologists, genetic counselors, obstetricians and our pediatrician) will be awaiting her arrival ready to perform their once-over and specific tests.  This is where the nervous emotion kicks in.

With Clay, we thought, "Let's not be nervous or worried until we have something to be nervous or worried about."  A good approach that helped us remain calm and when there was nothing to worry about, a sense of relief flooded over us and we were just able to celebrate this new baby.  This situation is entirely different... we know this baby's chances for certain complications are so much more likely.  This time around we feel like we are sitting on a wobbly fence and we can fall off either onto the green pasture or into the mud.  50-50 chance for either.  The thing is, if you land in the grass... great.  You can spend the day celebrating and have a picnic lunch picking wildflowers to your heart's content.  But if you land in the mud... what would you do?  Well, I know I would stand up, change my clothes, wash my face and get back on that fence.  Just because you fell in the mud doesn't mean you can't get to the green pasture at some point.  And tomorrow, we will take moment by moment, step by step and know that somehow... we will get there.  News is news and there is nothing we can do about it.  We can only control how we react to it.

And while I have these emotions of anxiousness and nervousness... I would have to say I have an overwhelmingly sense of calm as well.  I know there is only one reason for that.  If Corey and I were going into tomorrow and going into the surgery room alone or by ourselves, there would be zero sense of calm.  But we have God who will be watching over us and this baby girl with such a long prayer list from so many people, that there is a feeling of peace knowing that He is in charge.  And even if she is whisked away to the NICU, He is there.  He is love and she is love.  How can we go wrong?

Behind the surgery room doors, we will have our families waiting and pacing back and forth just dying to hear the news of our baby girl.  Behind the hospital doors in our communities, our state and across the country, we have more family, friends, and those we are yet to meet but are already connected to, just hoping to hear about her arrival.  The last emotion that is the most prevalent of all, is excitement.  I am certain that all mommies and daddies can relate to this emotional roller coaster and also felt all of these emotions on the days their children were born.  Excitement best describes how I feel tonight and how I feel about tomorrow... the big day.  Tomorrow, we get to start a new chapter in our lives.  One that is quite different from the one we were going to write.  The pages of this chapter are going to be dog-eared by us and others.  It is going to be a chapter of hope... of perspective... of learning... of love.

After a seventy degree day, the wind is howling outside my window.  I can feel the blast of cool air on my toes.  The weather report shows a 30 degree temperature change between today and tomorrow.  With it, rain, wind and maybe snow flurries also on the way.  Yes... change is a-coming.  I knew this baby girl was going to start a movement... I think it is so ironic that the weather is reflective of that.  Tomorrow is going to be different than today.  Tomorrow is our new beginning, our first step, our daughter's birthday.  Tomorrow is going to be amazing.

A sneak peek at her nursery... a frame with her first name initial is going to go above the crib.  TBA!

Wednesday, November 7, 2012

A letter to my daughter... a letter to my son

To my daughter,

Just the thought of putting down words that you will someday read brings tears to my eyes.  There is so much I want to say and so much I want to share with you...

Let's start with telling you that your daddy & I always wanted to have a little girl.  When we found out that you were no longer a figment of our imagination and you were really coming, we were over the moon.  To think in nine short months we would get to meet you... and now we are less than a week away.  I have to tell you... our journey is different than most, but that is okay because that's what gets us to today.  And today is a beautiful day.

We found out when you were only 33 weeks old and still in mommy's tummy that your arms and legs were going to be shorter than average throughout your life.  At first, we were very sad.  Sad for you that you were going to be different and sad for us too.  We were worried about complications, what your life would be like and how people would treat you.  We were worried about how we would be as parents, if we could be good role models to you and how we would handle your differences.  Sweetie, we were never sad about you.  You and your spirit inspired us to make some important decisions and quickly.  Your daddy & I decided that we can continue to be sad and feel bad for you or we could make the right choice and give you the best life that we know how and teach you that your differences are not weaknesses but strengths.

And that may not make a lot of sense.  How could your arms and legs being shorter be a strength?  Well, I have a secret to tell you.  Before you were even born we realized something very special about you.  Something that I struggled day after day to find the perfect word to explain... until one day Nana found that word and I knew immediately it was your word: extraordinary.  You, my dear, are extraordinary.  When our family, friends, communities and even strangers found out about you... they were moved.  You wiggled your way into their hearts and were determined to never leave.  You reminded them about what is important in life.  You made them believers in triumph and how obstacles can be overcome.  You showed them the importance of "community" and you encouraged them to reach out to us.  You strengthened their faith and reminded them how God takes care of us all no matter what.  And you made believers out of me & your daddy.  You showed us how much we can rely on others and how much people care.   You made us believe in each other and most importantly... in you.

You see, you have already touched so many lives... and all before your first breath of air.  God has such big plans for you and your life.  Never forget that.  You were put here on Earth for a very divine purpose and baby girl, you started fulfilling that purpose before you could have ever known.  Just as your daddy & I feel we have an obligation to share your story with the world and teach people about accepting and celebrating differences, we feel you have an obligation to touch peoples' lives too.  And the amazing thing is... all you have to do is be yourself and give a little smile.

We are not going to tell you that your journey is going to be easy.  There are going to be times when you will wish you were like everyone else.  You may be sad and you may wonder why this was your fate.  Just know that it is okay to have those feelings.  We will always be here for you with an army of those surrounding us ready to love and support you in whatever you may need.  Nothing in life worth living for was ever easy.  And how do you become the person you want to become without opportunities to be challenged along the way?  Embrace these challenges and know you will be better for it.  Not to spoil the ending... but your journey is unfolding exactly as it should be and everything is going to be okay.  Better than okay.

And just remember, your mommy & daddy, family, friends and God love you just the way you are.  And we want you to love you just the way you are too.  Be of good courage and He will strengthen your heart (Psalms 31:24).  All that matters is what is in your heart.  Fill your heart with joy and it will spill over onto everyone else.  Know that you are so blessed and God has given you so many talents.  It is up to you to unlock the doors to those talents and let them come out to play.  You are capable of wonderful things.  Yes you are... we have already witnessed it.

And what you do in this world is up to you.

"If you can imagine it, you can achieve it; if you can dream it, you can become it."
                                                                             ~ William Arthur Ward

So as you go through life, hold your head up high and feel confident in knowing just how extraordinary you are.  For before you were even born you were so loved by so many.  Never before was there ever a YOU in this world. YOU are the one everyone is excited to meet.  You were called angel, miracle, princess and a blessing by so many people before you ever opened your eyes.  You will always be a symbol of hope, of love and of life.  But to me & your daddy, you will always be ours... our baby girl.  And love you we will... always and forever... to the moon and back.

XOXO, Mommy

To my son,

From the moment I knew you were going to be a big brother, my heart rejoiced for you.  What an honor in life to get to grow up with with the title of "big brother."  With this title comes lots of things: responsibility, fun and the occasional squabble.  (Occasional is me being optimistic here.)  Well let me tell you... the key to being a good big brother is that word responsibility. All big brothers are responsible for teaching, helping and loving their little sisters.  And I have no doubt in my mind that you will embrace these tasks wholeheartedly.

But, Clay... there is something else you should know.  Your sister isn't like other little sisters.  She is smaller, shorter and she will always be that way.  When you are young, you won't even notice.  But there will come a time in your life when you will understand that your little sister is different.   What your daddy & I want you to know is that different doesn't mean anything other than that.  In our house, different will always be said with a smile.  Different will always define who we are and we will take on that word with pride.  Different will never mean wrong or bad.  Your daddy & I will spend our lifetime teaching you and others that different is beautiful.

And as your little sister's big brother, that word responsibility will take on more meaning.  You see, she will be loved by you and she will look up to you.  You will be such an influence in her life now and always.  Know that if you show her respect, so will others.  You are such a natural-born leader, we know that you will have no problems in leading the charge.  But this is your journey too.  And we know that some days are going to be harder than others.  Your daddy & I promise to always be here for you.  And so will so many others.

Over the course of your two years here on Earth, you have surprised many people... especially your daddy & I.  There have been many wonderful words people have used to describe you, but the one I hear on a daily basis is: smart.  And just as it is every parents' duty to discover their child's talents... we feel we already know yours.  Clay, your ability to remember and learn and teach are talents that God has blessed you with.  Don't think this happened by accident.  You should know that God doesn't work that way.  He gave you these talents for a reason and He will reveal His purpose for you.

Your daddy & I want to educate everyone one day at a time about what it is that makes your sister different and how we can all learn something from that.  We hope you allow your experiences to light your own way... sharing your story and moving others' to be better.  You were given a gift, just like your sister, to have the ability to change the world.

More than anything... your daddy & I feel so blessed to have you as our son.  You have taught us what it means to love even when your heart feels like it couldn't possibly hold any more love, it expands in a way to make room for more.  Your smile melts our worries away and your laugh makes us wonder if there is anything in life that sounds sweeter.  Thank you for being a light in our lives and we look forward to watching you shine on and on as you wish upon your star.  We love you big boy!

XOXO, Mommy