The face I’ve kissed a thousand times.

The date is set.  We’ve met with different plastic surgeons and finally made the decision on who we will allow to repair Evan’s cleft lip.

Many factors played into this…experience, outcomes, safety for Evan since he will need the cardiology team – anesthesiologist, ICU, nurses, etc – for his surgery and recovery.

The date is set. To give this world what it believes is the norm.

To give society what is acceptable.

Ok…maybe I’m being a bit dramatic.  But, in all honesty, if Evan could functionally talk, eat, and grow up in a place where he would not be judged.

I’d keep his face exactly as it is.  The face I’ve kissed a thousand times…if not more.

I’m not prepared to hand him over again.  I’m not prepared to have another surgeon cut into his body.  I’m not prepared to see my boy in pain again.

We are just getting into a rhythm at home.  Our routine, albeit, a bit abnormal with therapy at least 3 days a week and doctor visits, has become our little bit of normal.

We are still a ways away from Evan being fully oral fed.  I’ve decided to live on a prayer and see where he is on feeds even after his surgery.  I want to give him a chance to eat with a repaired lip and give him the opportunity to do so rather than jumping the gun and getting another surgery to put a tube in his stomach.

Risky move.  But, like I have learned to do in all things Evan…hope for the best…

I cried at dinner last night at the thought of Evan going back to the hospital.  I don’t think it’s fair that he has to endure this along with his very sick heart.

There’s a lot of things that aren’t fair in life, though.

And we can’t change where we are today.  And if I changed Evan in anyway…he wouldn’t be the boy I love so very much.  His story wouldn’t be what it is today…one of miracles, one of joy, one of hope.

His face.  The face I once feared.  The face I wasn’t sure I could love.  Is now the face I will look at with nostalgia after he is repaired.  When his little face comes together…not as perfect as some may like…but perfect in mine and God’s eyes….my heart will feel joy that he’s overcome another obstacle and my heart will also be a dinged…missing the face that I instantly fell in love with the moment I met Evan.

He’ll wear these scars for all to see.  Unlike the scars of his chest that hide his story of bravery and of courage.

These scars will set the stage for so many first…first days of school, first impressions, first meet cutes, first loves.

I’ll kiss these scars – like I kiss the ones on his chest – with love, with humility, in awe at all he’s been through.

So, as we prepare for his surgery, November 15, I ask all of you to be in prayer for my boy in the coming weeks:

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

– For my boy – that he is able to get close to full oral feeds by surgery date.  That the pain he will be in will be managed by pain medication. That his heart, brain, kidneys, and organs stay safe and infection free while under anesthesia and in recovery.

– 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.

I love my boy.  I know you do, too.  Thank you for joining us on the next part of our journey.

Comments

  1. Praying!