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!



  

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.

The beginning...

It started with the hardest news I ever had to hear... the words that have since gone through my mind hundreds of times.  The moment that changed my life... the line drawn in the timeline as the distinctive before and after I found out.  I began to fade in and out of reality hearing my own sobs that were not yet met by tears.  I saw how nervous but sure my doctor was and I could tell this was different.  At the time, it seemed like nothing had prepared me for this.  I fumbled my phone and tried to get a hold of Corey, calling him once, twice and the third time in a row when he answered all I could mutter was, "I need you."  And then for the first time, the one that marked the beginning of this word in my life, I said the words, "They think our baby has dwarfism."

It went from the hardest news I had to hear to the hardest news I had to tell.  My mom was first... I called her through my sobs and my heart broke for her and every time after that I had to tell someone the fate of our unborn daughter.  It felt unreal, the word dwarfism-- not mine.  It was so intangible to think this bump of a baby in my belly wasn't the sweet girl I had imagined looking so much like my own childhood photographs running through the garden of strawberries while the butterflies played with her hair.  No this baby girl is attached to this new word.  And to that new word... so many unknowns for me and questions that would go a long time being unanswered.

As nighttime fell on the worst day of my life... I tried so badly to sleep but I knew if I did, I would have a moment where I would wake up and think everything was normal and life was fine.  I didn't want to be slapped in the face with the disappointment again.  I didn't want to feel that over and over.  I was overcome by emotions... fear (of so many things-- all you ever want for your child is to be happy & healthy and the second that comes into jeopardy, as a parent, you feel all of their future pain), worry (what was going to happen, what would her complications/limitations be, would people judge her and us), doubt (can I take this head on, what if I am not strong enough, why me) and grief (the mourning of the little girl in my imagination chasing butterflies).

The words of my doctor kept ringing through my head, "In a year from now you are going to look back on this and wish nothing was different."  Even though the words felt like a pep talk for somebody else, I tried to make them apply to me, but I couldn't.  Although deep down, somewhere... I knew he was right.  But at the time, I had this huge gap like a tiny me standing on the edge of a huge ravine and on the other side was the me I was going to be.  The "how do I get from point A to point B" seemed like a feat so big, it was almost unattainable.

Almost.

Just seeing that tiny me all the way across the ravine waving at me smiling gave me enough hope to know that the gap in between, the journey from here to there... is my fate.  This moment is where I realized, just because it is hard to get through and may seem impossible... it doesn't mean it is... bad.  That's right, not bad, just different.  This is where the learning, challenging, growing of the soul takes place... and why would I ever want to miss that?  That's exactly what I told my doctor a week later when he responded with, "I love that."

When it rains it pours and boy did it ever.  Once we reached out to friends and family we were flooded with support, positivity, stories, and personal experiences that absolutely blew us away.  If every encouragement was a water droplet, there have been storms since the news and our rain gauge just keeps filling up, up, up.  We soon realized all these words together made believers out of us that we can do this.  But to know that everyone around us is forming a hand-linked chain to create our safety net gives me the confidence that this baby girl will be so loved not only by us but by everyone.

Some say they are intuitive, but I know I am.  I knew my son was a boy-- no questions asked.  I knew this baby was a girl even before the test came back positive for pregnancy.  I also knew I was preparing myself for something big... something I couldn't place at the time.  There were signs the whole way when I look back, I think I always knew this baby was going to be special.  Not only is she going to touch our lives, but those all around us.  She has the power to change stigmas and ignorances and labels.  She is going to move mountains (right Dr. Suess?)  I just know it.  About a week before our news, I finally decided on a nursery theme and color concept.  Pinks, browns, whites and a touch a mint with the theme: Dream Big Little One.  Like I said, I think I already knew.

And dream big we will.  It's been 3 weeks since the day I describe above.  We have 2 or so weeks until she will be here, in our arms, ready to meet the world.  And once again, we have been reminded that God is SO good.  We trust Him and we are so glad that we can turn our worries and fears over to Him.   We delight so much in the fact that He hand-picked us to be this little girl's parents and that He hand-picked her to be ours.   He never makes mistakes and I am not going to start doubting Him now!  Like Him, we have good things planned for this little girl but I know she has so much more in store for us.  There are so many things to be grateful for and we are celebrating each and every thing, the way we always should have done but seemed too busy to appreciate the small things.

This is a journey that was chosen for us and although we kicked and pleaded when we began and fell right off the edge into the ravine, we turned around and saw a huge opportunity to become better and see things from a different perspective.  We are taking the first few steps into the wild ravine and into the unknown with high hopes of getting to the other side someday where we can be everything we want/need to be.  But right now, we are anticipating the adventure and we look forward to each challenge we can overcome, each step towards learning, and growing in the depths of our character.  Our minds will be open, our experiences more rich and I believe we will be amazed beyond our craziest expectations.

Thank you for coming along this journey with us... any and every ounce of awareness we can bring to dwarfism and achondroplasia and celebrating differences and everything in between will be well worth it for us.  Just by reading this, I hope you have found a little place in your heart for us and I hope we put down roots and continue to grow right there.

XOXO
Spencers

**Thank you to everyone for your letters, e-mails, phone calls and texts.  It has meant the world to us.  Also thank you to our new friends we have already made in the last few weeks.  Thank you for reaching out to us and accepting us for who we are.  We look forward to getting to know you even more.