Thursday, April 3, 2014

The Journey... and All of its Parts

This is a story.  A metaphorical story about a journey.  I purposefully wrote this in second-person so you could easily step right into my shoes and allow yourself to feel this journey as if it were yours.  There are lots of analogies that I could only explain this way... to give you my perspective.  Every feeling, every turning point, every step along the way has made its way into this story.  I had to include it all... so it was truly authentic.  Right or wrong... this is how I felt at the time....

I have referred to this journey many times in my writings... but this is the complete story of that journey.

Part One: Welcome to God's Genetic Stadium: Coming to terms with the 1:25,000-40,000 odds and the initial shock of the news of a dwarfism diagnosis.

There you are, sitting by your girlfriends-- all giddy just like you were the moment you found out your exciting news.  That smile on your face is the exact same smile that everyone around you has as well.  You are sitting in the bleachers of Fenway Park, you and 36,000 other mamas-to-be.  Except it's not Fenway Park... it's God's Genetic Stadium and you are about to get the life-changing news that you have been waiting for since you found out you were expecting.

You take a deep breath and think about the moments leading up to this... a first pregnancy after months of "trying" that ended in a loss after seven weeks.  The heartbreak, the disappointment, the worry that took up permanent residency in your heart as a result.  A second pregnancy that took a complicated turn and resulted in high-risk fetal monitoring twice a week for eight weeks.  But... a healthy boy was born.  Praise the Lord!  And now he will be a big brother with this pregnancy... and with it, so much hope.

You open your folder in your lap and you hear God's voice.  You look at your girlfriends and you start squirming in your seat-- here we go!  The first page says "Gender" and God announces that 17,456 of you will have a girl and 17,297 of you will have a boy.  1,200 of you are having twins and 47 of you are having triplets.  You wait to see what appears on your page in front of you.  GIRL!  You are having a girl!!  Excitement runs through your veins and confirms your intuition.  A girl.  You quickly show your page to your girlfriends and you see theirs and you cheer.  WooHoo!!!!

Next page... hair color.  You hear God announce how many of you will have brown haired babies, blonde haired babies or red haired babies.  And then on to eye color.  With each reveal, you get more and more excited!  This little blonde-haired, blue-eyed girl is mine!  You can picture her and you cannot wait to swing her in your arms and dance.  You feel overjoyed.

More genetic traits are revealed and with each one there is more enthusiasm as your little one starts to become more and more real.  And you giggle each time when you realize the apple never falls far from the tree when your daughter is handed down your messiness and your husband's charm.  The stadium is noisy with chatter among the mamas-to-be as they can't help but to share each and every genetic trait with their friends.  And then God speaks the words that silenced the stadium in one breath... And since you weren't paying attention you flip to the next page and it is titled 'Birth Defects.'

You gasp.  Birth defects?  Could this really be a page in my baby's folder?  The thought was one that was always kept at a distance.  You think about how you have escaped this before... could you again?  You look around and every mama-to-be has a somber face, their eyes closed and head bent down.

Each one of them is saying the same thing over and over under their breath, "Please don't pick me, please don't pick me."

God continues... "1,000 of you will have a baby born with a birth defect.  If your page remains blank, you are free to leave the stadium." You look at your page hard with eyes that could burn a hole right through it.  And something appears... the word, "yes."  You stare at the word.  You are sure it is there but your head is screaming, "NOOOOOO!" so loudly that you cannot process the thought.  Your heart sinks.  Could this really be happening?  Your eyes well up with tears and you look up at your girlfriends and they begin to tear up as well.  For you.  And they put their hand on your shoulder as they quietly exit the stadium without a sound.  But not all of them left.  Two girlfriends were still there among the 1,000 other mamas-to-be sitting scattered throughout the stadium with shock and fear spread across their face.

God speaks, "360 of you will have a baby born with Down Syndrome..." You look down and nothing appears on the page.  You look around and see another group of girls get up and leave the stadium.  And you hear the list that God speaks, "240... heart defect, 120... cerebral palsy, 45... cleft palate, 36... spina bifida, and so on... But your page remains blank.  You hear sobs and screams and can feel the shock and fear of everyone around you.  Your heart is pounding through your chest and the pressure makes it almost impossible to breathe.  Don't we all just want the best for our baby?  Does this guarantee a harder road?  The picture of the little girl you imagined just a short moment ago is miles away.  She is faded, blurry and hard to see.  Is she even still there at all?  You look up and the stadium looks almost empty.  In fact there are only 181 girls out of the 36,000 thousand that sat there only a short time ago.  God continues... "One of you will have a baby born with dwarfism."  And before you could look down on your paper to see the word... God looks right at you.  "Me?" You say the word out loud.  "Dwarfism?"  You think it may be the first time the word has ever passed your lips.  "But there must be some sort of mistake," you say.  "I am 5' 8" and my husband is 5' 11." This doesn't make any sense."  God smiles and it seems as if He almost winked at you.  And you slowly get up and leave the stadium as you hear God hand out the last birth defect... stillborn.

Part 2: Moving Mountains: Dealing with the diagnosis, pivotal point in moving forward and the power of opening your mind

You leave the stadium and you feel something heavy attached to your foot.  You look down and see the word DWARFISM made of cast iron hooked by a chain and cuffed to your ankle.  You shudder and think, "This is not my word."  You shake your foot trying to free yourself and you trip right over it.  You can feel yourself falling... in fact, you have fallen right off the edge of a cliff-- thirty feet down into a ravine.  You feel the sting of the fall but you immediately jump to your feet and you claw at the earth trying to get back up on the cliff.  But, this word will not leave your side.  It's weight won't allow you to climb.  You try to detach yourself from it.  You look desperately for a key but you realize there are none.  You call for help repeatedly but there is no one there.  You start scanning the ravine's edge and think of any and every way you can make it back on the cliff.

You beg and plead with God that He helps you find a way to get up there, to remove this word.  Because... there was before this word.  There was your normal.  There was your comfort.  There led you to your life the way you imagined it.  That little girl you pictured in your head was up there waiting for you.  She needed you or actually, you needed her.  But, it was silent.  After hours of trying to get back, you realize that you can't.  The pain now has set in and you begin to feel the sharpness of what has happened.  You feel broken.  Shattered.  You fall back down to the ground in a heap and you lose yourself to the ugliest cry you have ever had.  Your body is shaking because now you understand... you have to leave your normal up there... you have to leave her, the girl you imagined, up there.  You have to say good-bye to what you thought you always wanted.

It has been hours, days and even longer and you are slowly beginning to understand that this word will now always be a part of your life.  You fall asleep only to wake back up scared and startled, "Where am I? What has happened?" And then you feel the weight on your foot and you are hit in the face with the news again and with that the realization of where you are and the pain starts all over.

"God," you cry out... "Why me?  Why her? Why us?"  He appears and looks at you with loving eyes and says, "Because... I have chosen you to be her mama.  I have chosen her to be your daughter.  I know this is not what you expected, but it is a part of my master plan.  She is perfect in my eyes and I have made her to be so, for I never make mistakes."  And you tell Him, "I don't understand."  And He says, "Have faith my child."  And with that He was gone.  "He chose me?  Why?" You wonder what God saw in you that made Him think you could handle this.  You were weak.  You were afraid.  You were lost. And the wind begins to whisper all around you... "With man this is impossible. But with God, all things are possible." (Matthew 19:26)  You shake it out of your ears unable to absorb the thought.

You stand up and bear weight on your uneasy legs.  You look up at the cliff for the last time and you close your eyes.  Behind you is the unknown.  You are so completely afraid of what you don't know.

You take a deep breath and for the first time, you turn around, open your eyes and take a good look at what lies before you.

It's a jungle.  It is thick and deep and scary.  You have never been in a jungle like this and you wished you had been more prepared to survive in it.  You see several slim paths in front of you.  You stare at them for what seems like an eternity.  Where to go?  Which path to take?

This marks the beginning of your new journey-- making the decision to take that first step forward.    You hear your head start to analyze each path... you feel your heart pointing to one and you just start walking.  Your heart knows the way.  You pick up your word and take a step.  And then you keep going.

But the path is rigorous to start.  It is the farthest thing from easy.  Carrying around the extra wight of your word is grueling.  You are startled by the littlest noises.  The thickness of the jungle is overwhelming... you often close your eyes, regroup and focus on what is in front of you.  And then you realize, no one knows you are here.  You start by contacting your spouse and you feel the fall all over again.  You are now the giver of this word and you just attached it to your spouse's foot.  And then on to your family and friends.  You fall over and over repeating the same story again and again.  You become numb to the reactions, you answer the questions of why you are here with the little knowledge you have.  The heaviness of your heart and the tears in your eyes make it difficult to see the path before you.  And it dips and turns and jolts and narrows.  Monsters rear their ugly heads at you in the name of doubt, worry and uncertainty.  You are jumping and reaching and stretching and falling... all the while dragging your word behind you.

And then you get to a door.  It is labeled YOUR MIND.  You realize the only way through the path is to go beyond that door.  But it is a rusty door with several different combination locks... some big, some bulky, some really old... all ugly.  These are the very things that you have spent your lifetime harboring and the very things that have been holding you back-- all this time.

You feel defeated before you even start.  "The world is telling me how to feel about everything... what I do, what I should look like, how to treat others, what's important..." Your words are spoken to no one.  But the truth behind the statement sets in... And you hear the sweetest voice to your ears imaginable.  It's your mama, the woman with the kindest spirit you have ever met. "Sweetie," she says... "Stop listening to the world and start listening to your heart.  You will come to see what is important and you will find yourself along the way."  You plead with her, "But mama... what if my heart is leading me in a different direction than that of the world?"  And she says, "Follow it.  Your heart will not mislead you.  Go your own way, seek good and always be kind.  And remember... 'Today is the day the Lord hath made.  Rejoice and be glad.' (Psalm 118:24)"

You hold the first lock in your hand.  It is labeled "judgement." You go back through your memory and pull up anything that registers with this word... the wind gets knocked out of you.  Painful memories come flooding in... ones where you were judged.  Ones where you judged.  You let go... you allow yourself to feel-- really feel.  The hurt is so real it's like you could reach out and touch it.  And the foundations to your character start to crack and soon enough... your walls come crashing down...  You forgive others, you forgive yourself.  Your heart begins to bleed leaving gaping holes behind.  And the lock snaps off the door.

You go through each lock... peeling back the layers to every aspect of your soul figuring out that correct combination... and with each moment of clarity, another lock becomes free.  After many days...  you look at all the locks sitting opened next to you: failure, image, self-worth, disappointment, comparison and influence.

And finally... your last lock.  The only thing between you and that door.  Fear.  You close your eyes and you let your worse-case-scenario happen.  And like a dangerous wave rushing over your body, you imagine your daughter... gone.  Gone forever.  The daggers dig deep.  They cut you over and over.  And you feel shattered-- but not like before... this was nothing you have ever felt before.  Your heart cries out to your head and you realize... this is by far the worst pain you could experience.  Not a diagnosis, not complications, not different.  Gone.  Like the first baby... only seven weeks old.  Gone.  Like the babies of the 180 women you left behind in that stadium.  Gone.  Heart-wrenching, unexplainable.  Gone.

But, you were not one of those 180 women.  She is here... you have to find her.  But first, you have to find yourself.

That last lock crumbles and you begin to pull at the door.

Your mind opens.

You step through the door lugging your word behind you.  You look around.  It looks exactly the same as it did on the other side of the door.  But wait-- it sounds different.  You start to listen to the world around you.  But amazingly, you don't hear everything.  You have somehow mastered the ability to just hear the sounds that inspire you and lift you up.  You drink in these sounds like you have never had water before.  It was an all new thirst.  And you listen.  And you learn.

All of the sudden, the sun begins to shine brighter, the leaves begin to glisten, the flowers start to bloom, the path widens and starts to smooth.  You are looking at the world differently... and in every direction... all you see is beauty.  You keep seeking.  You keep listening. Your mind begins to bend in a way where compassion consumes your thoughts and love takes over.  With every new step comes empathy, understanding and encouragement.

Part 3: Support and Her Arrival: Creating that safety chain, a day at a time, finding mentors and meeting your daughter

You stop in your tracks.  You hear a sound... voices.  Sweet voices.  Familiar voices.  You walk faster, jog and now sprinting to the direction of the sounds with the clang of your word following you.  You stop.  And there before you is a village.  An entire village.  People are gathered in a circle.  The voices have stopped and you are being led by the hand to the center of the circle.

"We were waiting for you."  You look around... you see your spouse, your mom & dad, your siblings, your best friend, your college roommates, your neighbors, your high school pals, your cousins, your childhood friends, your teachers, your co-workers, your parents' friends, your acquaintances, your former bosses... your enemies.  One by one they stand. "I am here."  "I am here."  "I am here."  They each speak the same three words that mean more than a million words combined.  And with each promise, they grab the person's hand next to them.  And it begins to take shape.  The chain.  The safety chain of all those who love you, all of those who support you, all of those who are there.  The hot tears are streaming down your face as you realize you are not alone.  You never were alone.  You will never be alone.

Onward with a new spring in your step.  It feels like you are floating on air.  You glance behind you... they are following you!  You smile.  Thank you God.  Thank you for them.  You start gliding down the path and it hits you.  You look down.  Your word is gone.  The cuff, the chain... all gone.  You are bewildered... what does this mean?  Something shiny catches your eye... you move towards it wondering if your word was just temporarily hiding from you.  But, it's a mirror.  You move closer to the mirror uncertain at what you would see... it is you.  Or is it.........?  You don't recognize yourself... the person looking back at you is more confident, stronger and braver.  But it is you.  You are changing.  You are different.

"I chose you... because you needed her.  You needed this journey.  This was always your fate."  You are startled and quickly turn around.  You nod at God, this time understanding.  "But God," you say, "Where is my word?  Is it gone?" "No my child; it's not gone. It is written on your heart."  More tears... because you know He is right.  It will always be your word, but you have come to love this word because it is hers.  Because she is yours.

"God... is my journey ending?" you attempt to ask through your tears.  He says, "Your journey is never-ending.  In fact, you have just begun." And with that He was gone...

You look back in the mirror.  Yes, you seem different-- forever changed.  But you are confused because you know you are not where you want to be.  Where you need to be.  And then you think about God's words again... "never-ending."  You realize that you will never arrive at a place where you are done growing, done changing, done learning.  But, by allowing yourself to go on the journey... and continue on the journey, you are committing yourself to a life you can be proud of.

You step back on the path but not without a glance behind you first.  And you immediately do a double-take.  Yes, your safety chain is still behind you... but it has grown.  People from your town, friends of friends and even some strangers have joined in.  You cannot believe your eyes as you actually witness it growing in size.  Your smile beams and you know now more than ever how much you need them behind you.

You turn back around and start to follow the path once more.  But... you start to get anxious.  In the jungle you can only see a few feet in front of you.  You start thinking ahead... one year, five years kindergarten, ten years, teen years, graduation, twenty years, a wedding?  You decide to climb the nearest tree to take a better look at the future... you are worried about what lies ahead.  With each vertical step, you feel the panic start to rise inside of you.  By the time you reach the top and you peer way into the distance, you miss the last foothold and down you go all the way back to the ground.  You land in a heap.  One painful heap.

"It's better to take one step at a time... one day at a time.  Looking ahead will overwhelm you.  You will get there when you get there."  Who said that?  It's a mama-- just like you.  "Who are you?" you ask.  "Do I know you?  Why are you here?"  She says, "You don't know me.  But you will.  I was you... only five months ago."  You are confused..."What do you mean, you were me?" She points down..."Meet my daughter... she is seven months old."  And then you see her... the most beautiful little girl holding onto her mama's leg looking up at you with her big brown eyes.  She is shy and sweet and... perfect.  You fall in love with her immediately.  You reach down to hold her and your heart aches so much for your own daughter.  You wish so badly that you could hold her, know her, love on her.  Oh how lucky this mama is.  The little girl reaches up for you and you squeeze her so tight... "Wait..." I say.  But the mama interrupts me... "She was born with the same type of dwarfism that your daughter will be born with."  You look at her blankly... but... but...     

Words have escaped you.  You have a million questions.  A million thoughts.  But... all you saw was the motherly-daughter bond, love and happiness.  And it stopped you in your tracks.  Isn't that all you ever wanted?  Love?  Happiness?

Now, more than ever you become desperate for your daughter.  Oh just to see her face, just to touch her skin, just to squeeze her tightly and tell her how much you love her.  You think about your heart, gaping & bleeding.  You have to find her.  But where?  How?

You start to run down the path... your lungs begin to ache, your knees holding you steady.  You feel focused, you feel excited.  She is all you can think about...

You reach the edge of the jungle and burst right out into a meadow.  It is filled with wildflowers and songbirds and sunshine.  All things that you love.  This is where you would meet her... you were ready.

You sit down at a clearing and you wait.  And wait.  You start thinking about your journey from the beginning... oh how far you have come!  But the sting of those first memories are painful.  They will always be painful.  You have stirred them up and they float to the surface and your eyes spill over with tears.  Now you are sobbing... your head in your hands.  You start to feel something weighing heavily on your heart...but you can't place it.  "Guilt." You look up.  It's a woman.  Someone you have never met before... she walks towards you and you realize that she has dwarfism.  "I understand why you feel guilty.  But what you felt was real.  And it was necessary in your journey for you to get to where you are today."  You are still sobbing..."One day will she ever forgive me for the way I felt?  For being so sad?" The woman smiles.  "Yes.  Because your story is a love story with a happy ending.  It was always about your love for her." You look back up at the woman... You no longer see her dwarfism... You see compassion, wisdom and determination.  You see her for her.

You look to the skies and hold up your hands and cry out.  You pray.  You pray for your daughter.  You do not pray that she is born without dwarfism.  You pray to let His will be done.  You pray for strength.  You pray for guidance.  You tell Him you are grateful for choosing you to be her mama.  You tell Him you are grateful for the change in you.

And then you hear more cries.  You think they are coming from you when you realize they are hers.  Your daughter's.  You rush over to her and swoop her up in your arms.  In one single moment... the gaping holes in your heart are completely filled.  Even spilling out.  The fear is gone.  Only joy remains.

And with her in your arms... you dance.  You feel the sun on your face, the flowers underfoot and you hear the songbirds welcoming her.  But none of that matters.  She is all that matters.  And you dance.   

Part 4: Life as We Know It: How she is changing the world-- one person at a time

Those first moments of her life were indescribable.  The one thing I know for sure... God was there.  I have never been more sure of anything.  (Read Lilah's Birth Story to hear more.)

It is amazing how much we can learn in hindsight.  And in hindsight, I wish we could have skipped over all the pain and went straight to the joy.  And the joy--- oh the joy!! She is such a light in our lives.  We thank God for her everyday.  But, the reality is... this journey was so deep and meaningful and life-changing because we allowed ourselves to be real and to be human.  I really wouldn't-- couldn't change it for what we gained as a result.

What took place after her birth, I could have never imagined.  Lilah started to change the world.  I am aware that is a very bold statement.  What does it really mean to change the world?  To me it means this... she is changing minds about existing stereotypes, about persons with disabilities, about what it means to be different.  Changing minds can change hearts.  Changing hearts... that will lead to a better world.  She is doing that.

But, she is not alone... she joins an army of children and mamas and daddies and families that are diligently doing the same thing.  Educating, leading, living by example and loving.  We are proud to be a part of that army.  Our safety chain continues to grow and we continue this journey together... as a family.  Thank you for joining in this army as well.  Together, we will change the world.  One person at a time.  

This is our story.  We all have a story worth listening to.  Thank you for listening to ours.


  1. Hi! My name is Jill and I have read some of your posts. My good friend is sister's with Melissa.... anyway, this came up on my fb feed today and as I read, hot tears fell down my face. Tomorrow, three years ago, I had the ultrasound that told me my child had multiple birth defects. He has a birth defect called OEIS that affects 1 in 250,000 to 1 in 400,000 births. Anyway, this is the best writing piece I have read that describes that journey of having a child with a birth defect. It's like I could feel that sense of sitting in that stadium, waiting and waiting. And the locks! Oh, how true. Thank you for sharing this. Truly. Your daughter is beautiful.- Jill My son's blog is www.isaacsinpsiration.blogspot.com if you want to see our wild and beautiful journey

    1. Hi Jill! Thank you so much for your comment! Thank you for reading... I am so glad that this story could apply to you too... it is so humbling to know He chose us to be these kiddos' mamas! I want to relate to other mamas and to inspire. I want people to understand what it is like and how it can change you. Thanks for the support. (And I tried to go on your website but it said it wasn't available?) XOXO

  2. Hello! My good friend, Melissa shared the link to your post on FB and I just had to click on it :) I have heard wonderful things about you and your family from her! Thank you so very much for sharing this post and your entire blog, for that matter. You have such an incredible way with words. I have read several of your posts and do believe you were meant to be this precious little girl's mama. You help her have a voice right now until she has {a stronger!} one of her own. Thank you again...Take care!! ~ Rachael

    1. Rachel, thank you so much for reading! I love Mel to pieces and she is a huge part of this journey for me. I agree that Lilah was meant to be with me and I am so grateful for that! Thank you again so much for the support! XOXO

  3. My daughter-in-law shared your post on Facebook. She, too, had a long wait in the stadium (actually, the statistics say she would have had to travel to 9 or 10 to find her daughter). Sharing your words about your journey is a powerful thing. Not since, "Welcome to Holland," written many years ago, has someone written an account that so vividly captures the roller coaster of emotions -- including absolute joy -- that families are treated to when they welcome a special child. Thank you for writing and sharing this. Now I must go and replenish my tissue supply. Love, Grandma to a special girl.

    1. Pamela, That's interesting that you bring up Welcome to Holland because this initially set out to be a rewrite of that but when I saw where it was going, I knew that another post would need to be written to accomplish what I want to say about Welcome to Holland. I was given that poem by at least 10 different people when we found out about Lilah's diagnosis. It is a great poem that has helped so many people over time. Personally, I was discouraged by it but I just look at things differently I suppose. SOmeday I will finish that post and you will see why... Thank you so much for reading! Give that granddaughter hugs for me. XOXO

  4. You are amazing! This post is incredible and such a powerful use of words. I am in awe. You and your journey are changing the world and inspiring us that are trying to do the same. XXOO

  5. So beautifully written - thankyou for your honesty. I read "Welcome to Holland" many years ago and had forgotten the emotions it stirred within me until tonight! Your story is such a powerful one, sharing your pure raw emotions, highs and lows and the journey you now find yourself on. Thankyou so much for sharing it. You truly are inspirational, not only as a mum to your beautiful family, but also as a person. No doubt your family will continue to change hearts and lead to a better world by "educating, leading, living by example and loving."

    1. Thank you Gayle! That is so kind! I really appreciate your support and taking the time to read about our story. I will be do a rewrite of Welcome to Holland at some point here soon that gives a very different perspective. This piece was originally started to be that rewrite but it took a totally different turn. I now know what I want to write and now it will just be a matter of sitting down and knocking it out! Thank you for your support! XOXO

  6. Leslie,
    First of all, welcome to the army :) One of my close friends sent me the link to your 'Dear Hollywood' post and I was blown away. So, thank you for putting my exact feelings into one phenomenal letter. Lilah is an adorablel little girl and she is going to do amazing things (she already is). Sending love and happiness to you and your beautiful family.

    1. Kristen, Thank you! Thanks for the welcome, for reading and all of the compliments... thank you! XOXO

  7. I think I can stop reading the internet now because that has to be the most beautiful thing I have ever read.

  8. I enjoyed meeting you and Lilah at the museum today. Thanks for giving me the link to your blog, I loved reading about your journey. She is seriously adorable and you are very blessed! I loved that my Leah and her were only born 3 days apart! Leah doesn't have any playmates your daughters age so I would have suggested a play date if it weren't for us moving out of state next week. Anyway, I wish you and your family the best. Thanks for sharing your story!

  9. You are changing the world and these posts are making a world of difference to all of us on this journey that do feel alone. This brought me to my knees in the most positive way. Thank you for sharing such a raw and personal story for the rest of us who aren't so eloquent.
    God bless.