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.

 

 

Comments

  1. Ashley Coleman says:

    Praying the deepest prayers for you guys!

  2. Linda Marthe says:

    You are the bravest woman I know your courage is amazing. The Love you share is wonderful God did know what he was doing when he placed Evan in your care. He is there and help will always be. He loves and admires you. He has sent ministering Angels ahead of you to prepare the doctors with everything they need for this to be successful. I pray you feel the True Love of God today he has wonderful plans for your Beautiful Family. May God himself be with you today. Perfect healing just as Jesus is in Heaven whole and perfect I pray that Evan be as Jesus is in this world…God Bless You….

  3. What a great little fighter!! He is so beautiful!! It breaks my heart to hear all that this boy has gone through in such a short amount of time. Strong prayers go out to Evan and your entire family.

  4. Nancy Menary says:

    Dear Czarina
    I met you while we were waiting for Jackson Houser to come out of surgery – I am Jackson’s other grandma. Your compassion for Kyle and Lindsey was so kind, generous and touching at a time where you understood their fears. I just read your blog, and I want you to know, my thoughts and prayers for your sweet boy will be lifted up right beside my prayers for Jackson. You are a gem, Evan is so blessed to have you.

  5. I will pray for your little boy, Mom..
    You guys have all my prayers and love!