After the turkey.

It’s 6:30 AM and the sound of “Mama” from my best boy’s mouth is coming from his baby monitor.

I get up, get a sippy cup of milk ready, fill syringes for medicine, and pour myself a big cup of coffee for the day.

I walk into his room – dimly lit with the hum of the humidifier in the background – and my almost 2 year old jumping up in down in his crib – holding onto the rails to get extra air under his feet.

He smiles – lots of teeth now – and screams, “MAMA!” as loud as his little body can muster.

I pick him up, cradle him good morning, smell his sweet Evan scent, and off we go to start the day.

I’ve made it part of our routine to lay my hands on him and pray.  I close my eyes, ask for guidance, pray for health, pray against infection and illness…it’s part of the ritual of our everyday that I need him to hear.  Need him to know…that when I say, “God…please help me.  Help me and guide me to make the best decisions for him.  Help me and guide me to do what is best for him.  Help me and guide me to give him what he needs.  Help me and guide me to be the mother you have called me to be.”

It’s a prayer I speak out loud.  So he (He) can hear me.  Desperate.  Pleading.  Needing.

On October 13, 2011 – we found out about Evan’s diagnosis.  His incredibly special heart.  His incredibly special path.

Just like I do every morning…saying those same prayers….fervently…obediently…I did the same on that day 2 years ago.

I started praying for my boy then.  Needing God’s direction.  Knowing that sometimes the choices in this journey wouldn’t always be easy.  But, knowing that I had to make them.  Had to do whatever I could for the son I loved so dear.

This week is full of excitement for so many of you. As it should be.

The holiday season is in full swing.

Turkeys, ham, stuffing, friends, family….Christmas season quickly approaching.

As many are preparing for meals and gatherings…I’ll be preparing to board a plane with my best guy and and my best boy.

We are taking a leap of faith and hope and talking to – what is arguably – the best pediatric cardiology team in the world – to see if there is another option for our Evan’s special heart.

So many of you don’t quite understand – since you see pictures and hear stories of my boy – and from the outside – he’s robust – he’s sturdy – he’s a tornado toddler – he seems “normal.”

And quite honestly, I don’t get it either.

I look at him and can’t believe that he has another open heart surgery in his oh so near future.

I look at him and can’t believe that I have to hand him over again.

It’s agony.

Utter agony knowing that we have to do this for him.

As the months have passed and we have watched Evan grow and become this boy that we have prayed for, Craig and I decided we would research every option out there…not wanting to look back on any part of this journey and say…”If only we had…..”

The hard part about living with no regrets is doing things that may be out of your comfort zone.

Our local team in Dallas has been exceptional.  To seek out this other opinion has been a tough decision for Craig and I.

Because quite frankly, how do you argue with the care we have received here?  How can one look at Evan and think….something more can be done?

As we spoke with our team here, through data, through tears…we discussed what the plan should be for Evan.

Our cardiologist was honest, blunt, and relayed data to us to give us the best objective opinion.  He feels strongly we should stay the course and the next planned surgery – the Fontan – would give Evan the best shot at many good years.

And at the end of our conversation….Craig ended it with, “We just need to know we have done everything we can possibly do for him. We need to be able to look our son in the eye and say, ‘We did all that we could.”

So…that’s where we are.

We are arming ourselves with knowledge.  We are going speak to the “best of the best” and let them meet our miracle and decide for themselves if there is anything else that can be done.  To not just give our boy “many years” but to give our boy a lifetime.

While you enjoy this holiday season and give thanks and pray over your the meal you are enjoying…can I ask for prayers?

– For a safe flight to Boston for Craig, Evan and I on Saturday, Nov. 30th.

– For health over Evan the next few days and next week.  Any kind of illness can force us cancel the trip.

– For Evan’s spirit as he endures 2 days of clinic visits and procedures.  He will have an MRI and heart catheterization.  The procedure will require him to be intubated and put under general anesthesia.

– For Evan’s body  to stay strong during the procedures.

– Pray against illness, infection. complications.

– Pray for protection over his heart, his brain, his organs, his sweet little body I love so much.

– For a safe trip home for all 3 of us.

– For discernment and direction.  We meet with the Boston team on Dec 3rd .  Once we hear their findings, Craig and I will have to make the decision on what to do next for Evan surgically.

– For Craig and I. Our spirits are down that we have to do this…but we know we need to.

But also…..in the spirit of Thanksgiving…I leave with my list of thanks:

– Thankful for our team here in Dallas that has given us the best they could give to our son. Thankful that – even though they may not agree with us – they support our decision as Evan’s parents to seek out other opinions.

– Thankful for the kindness of complete strangers who recognized an unspoken need and provided for us in ways we don’t know we could ever repay.

– Thankful that Evan is doing so beautifully.  That his heart is beating strong and allows Craig and I to seek opinions with clear minds.

– Thankful for family that will surround our best girl while Craig, Evan and I are away.

– Thankful for the spirit of understanding Iz has through all of this.

– Thankful for friends and our church that have been praying for us and this decision to go for weeks now.

– Thankful for my Heart family that has been supportive and offered their expertise knowledge.

– Thankful for a loving God – that no matter what decision we make for Evan – has every step mapped out for my boy – and only wants the best for him… and for us.

 

I’m so Thankful for you. Always.