Let’s celebrate.

The enormity of the day has fallen on my shoulders.

In my effort to “live in the present” and capture the greatness of 2013 for all that it is and will be…I have been enjoying every single second with my best girl and best boy.  I have relished in the party planning for Evan’s big day.

It is amazing how quickly time flies when at times during the past year it felt like it stopped multiple times…slowed down in agonizing seconds…minutes crawling along at snails pace.

I’ve been doing the normal birthday party prep.  Getting goody bags ready, planning games, buying candy…oodles and oodles of candy.

I’ve been celebrating my boy with every balloon purchase, toy give away buy, streamer bought.

Then…this week arrived.

I was called by his cardiologist to move up his heart ECHO (a sonogram of his heart) because of a scheduling issue.  It will be the first picture of his heart since his surgery…where we will see if what the surgeon did is working for my boy.

I was called by the craniofacial department to schedule his full cleft lip and palate repair.

I was sent texts, emails, Facebook messages by friends who can no longer make it to his birthday…the cold and flu season taking victim to each of my guests.  None of them wanting to put Evan at risk of getting sick.

The normal of the planning…the normal of our life….shattered once again.

It’s hard to live in the joy of the day when you are always reminded of the heart aches that surround your life.

I am trying to hold it together as much as possible.  Really just trying to be strong and joyful in the moment that is coming up.

My boy will be turning a year old in less than a week.  We will be singing happy birthday to my son in a couple of days….I’ll get to see him smash into his cake, wear his special party shirt, take loads of pictures..trying to capture the memories of the day.

I’m celebrating it in grand style…not just because of all he – we – have endured as a family this year.

I’m celebrating with such fan fare because less than half of babies with his heart condition make it to their first birthday.

I’m celebrating in such grandiose fashion because with his very special heart…only 85% make it to the next staged surgery…and of that 85%…only 65% make it to kindergarten.

I get this birthday…this milestone…I have been given this incredible gift of him just being here….today…

Every birthday I get for him…every year I get to plan a celebration of him being HERE….is a milestone that I promise to party hardy for not just him…but for others like him..who didn’t make it…for mothers like me…who didn’t get to buy the party hats, the noise makers…

But today…as I held Evan while he slept….all 20lbs of my chumba wumba laying on me…I was brought back to the purpose of his birthday as I felt his heart beat against mine.

With each “lub dub” of his heart and rise of his chest…I was reminded once again of the miracle that is before me.

The miracle of his beating heart…his life.

I don’t need to wait on January 22nd of every year to wish my son a happy birthday.  I don’t need an excuse to throw a party, buy a party hat, indulge in candy….because each day is a “happy birthday.”

Everyday.  Everyday I get to celebrate his birth…his life…..everyday that he is here and his heart still beats….I get to celebrate.

So…I’m inviting you…my blog readers, my Facebook prayer warriors, family and friends…to join me in celebration of not just Evan’s life…but life.

I’m inviting you on Tuesday, January 22, at 5:01 PM – when Evan took his first breath in this world – to stop and celebrate life…maybe your child’s, maybe your loved ones, maybe a friend…maybe your own.

Feel the life in your breath….the miracle of your beating heart.

And celebrate.

 

It’s ok to be different, right?

“Evan..say, MAMA!” I looked at my boy, over exaggerating every letter and sound.

His little brow furrowed, “YA YA!”  So proud of himself.

I kissed his sweet head, “Ok – you can call me ya ya. You sure do like to talk.”

Iz stopped eating her nourishing bowl of hypercolored, sugar cereal and looked at me,”Mama – he’s just a baby. Baby’s don’t talk.”

“Yaya, yaya, yaya, yaya!” yelled Evan…almost like in response to his big sister’s false claim.

“He is talking.  That’s how he talks.  He just doesn’t say words yet.”

She thought for a minute.  Took a bite of the rainbow bowl of fruit colored cereal and said very seriously, “No mama, he can’t talk.  He doesn’t have a lip like us!”

Crushed.

That was the first time she had ever said anything about Evan’s cleft.  I wasn’t sure if she recognized that special part of her brudder.

“Isabelle – remember what we talked about.  You are going to stay with Abuela and your Tita this weekend.  Evan, Daddy and I have to go back to the hospital.  Evan has to see the doctor again.  This time, he will have an operation on his face to fix his face,” I said…holding back tears with every word.

“But, Mama nutings wrong wid his face,” her tone confused.

“I know, honey. But, like his heart that is sick, his face needs some help too and the doctor’s are going to help us.”

She thought silently for a second.  “Dat’s why he has dat ‘ting on his tummy?  The line?”

“Yes – the scar is where the doctor helped Evan’sheart.  And now, we will have another doctor help Evan and to make his face and lip like ours.”

She put down her spoon.  Folded her hands in her lap.  Looked up at me with all the innocence in this universe and said, “But, Mama, it’s ok to be different, right?”

Yes.  It. Is.

My best girl.  Her knowledge of this world, light years ahead of so many.

Tomorrow, our best boy will be “less different” than the rest of his.  Yes, his scars still a telling story of his battles. But, his smile will be less wide and won’t stretch for miles like it does now.

His tummy will hold a feeding tube to help him grow up big and strong like his Daddy.

When Evan was born, I was terrified about how he’d look.  I didn’t realize I would grow to love his “imperfect” face – well imperfect by the world’s standards – as much as I do.

I kiss his fat little cheeks and his little upper lip stretches from ear to ear.

Perfection.

As much as we don’t want any of this to have to happen, we know that his lip repair is necessary.  We know that a feeding tube is necessary.

It’s just part of the story.  His story of bravery, courage, perseverance that he will have to share when he grows old and grey.

It’s a small part of his story that I cannot wait to tell him over and over again when he is free from feeding tubes and his scars fading – only a small part of his life – and not the sole focus of  it like it is now.

His story, so beautifully written to date, has been the focus of prayer, the focus of hope, the truth that unconditional love absolutely exists in this world.

My boy.  My piece of perfection.  The face I love more than life itself.  The face that has taught me to look beyond what this world deems as beautiful and see the true beauty of someone’s soul.

So, tomorrow, as we hand our boy over again for another surgery and we all gather in prayer for our Evan, let’s not forget the face that we all fell in love with.  Let’s not forget the face that stretched from mile to mile…uniting us in prayer and love.

I love you, sweet boy.  You’re perfect already.

Please remember the following prayer requests:

For Evan to stay infection free.  Any respiratory illness could cancel his surgery.  Remember, we still have his cleft palate to repair.  The timing of his palate depends on the repair of his lip.  We would like his palate repaired within 6 months of this surgery as to not delay his speech any further.

– For his plastic surgeon – that he is able to repair Evan’s lip in a single operation without compromising the integrity and aesthetics of his nose and lip.  Because we opted to not wear the face device to bring his lips together due to his oral aversions, the surgery will be much more complex (oh boy…we’ve heard that before) than a classic bilateral cleft repair.

– For his general surgeon – that he is able to put in his stomach tube without any complications.

– For his ear, nose and throat surgeon – that he is able to put in ear tubes without any complications.

– For the head MRI – that the results they receive find nothing alarming and serious in his head in preparation for his next craniofacial surgery.

– For his care team – we are using the entire cardiology team from anesthesiologist, ICU, nurses, etc.  Please pray that they protect his very special heart.

– For the surgery and recovery – for a smooth operation free of any and all complications.  That he stays infection free and has a smooth and quick recovery.

– For Craig and I – we are not prepared to hand our boy over once again.  We need peace that all will be well.  Craig has admitted that this surgery will be harder on him than the heart.  Why?  Because his heart was something we could not see – all the healing was inside out boy.  This surgery we’ll be witness to it first hand.  We’ll see the little face we love so much bleeding, bruised, swollen.  We don’t want to see him in any pain…but we know it’s inevitable. I just want them to return my Evan back to me better than when we hand him over.

That’s it.  I will love my boy’s face no matter how it looks.  Just please pray they give him back to us better than before.

 

 

Arrival Day Prayers (which is going to be today!)

I just heard from Craig… and Czarina is about to start pushing their sweet baby boy into the world! Czarina asked that I hack into her blog and publish the poem that I wrote for her family.  And since you don’t mess with a woman pushing a baby out, I will do as I am told!

Please join with us in prayer right now for Evan, Czarina, Craig & Iz!

Shauna

Arrival Day Prayers

Here is a candle that glows so bright
Given to you for you to light
When your baby boy has made his way
Know that many are praying this day.

His heart is so special
God made it that way
He’s going to be a fighter,
Strong and determined, we pray.

This boy is a blessing
All that God makes is good
And He gave him to you
What an honor that He would.

Tears, they may flow
Joy and pain in the same place
But turn to Jesus, friend,
And see His face.

What a special day
His arrival is here
Prayers are going up all around
Let go of the fear.

Our candles will glow so bright
When your boy arrives this day
A Master plan is in place
Many are praying this day.

Prayer Requests

This page will be devoted to prayer requests that we need at the moment and prayers we need continuously during this journey.

Pray for:

  • He will able to breathe on his own as soon as they cut the umbilical cord.
  • His ECHO after birth shows nothing new and that surgery is possible.
  • He adjusts well to the first 24-48 hours of life as he learns to breathe, pump is heart – all on his own.
  • His brain, lungs and other organs are functioning normally.
  • My recovery is swift so that I can be with him very soon after I give birth.
  • His birth is smooth without any complications.
  • Strength for Craig.
  • Strength for me.
  • Guidance and knowledge for his doctors, nurses and surgeons.
  • For healing.
  • For peace.

If you have a specific request for your family – whether you have a Heart Warrior or not, please add your requests in the comment section so others praying for Evan can also pray for your child, for your situation, your family, etc.