I just need a little peace.

God must have known this because I’ve been bombarded with scriptures trying to teach it me.

I’ve also been bombarded in life with things that are so good at taking away the momentary bit of peace I’ve worked hard to achieve.

The Heartland has had another death.  A sweet girl, whose mother is so faithful, lost her battle.  She was waiting patiently for her new heart when she had a brain bleed.

There are other heart babies who are battling for their life.  So, we all band together in prayer, positive thoughts, well wishing…in hopes that this world keeps the warrior.

There are other babies gearing up for surgery…Mamas and Daddies in constant state of worry. So, we band together and pray and send positive thoughts for good outcomes.

There are other babies who have received bad results or are waiting for the results of a test that will determine the next course of action in this long journey…so we band together yet again.

I rejoice for my Evan and his progression since surgery.  I also fear for Evan…knowing that this season of good can turn quickly.

It’s a constant balance.  Trying to stay positive, trying to rejoice, trying to enjoy the present.  But, I’m reminded daily by other heart warriors, how fast things can go downhill.  How one day we are giving e-high fives across the boards because of a good visit…and then the next day….we’re on our calloused knees praying for healing or a miracle…all for the same child.

I try to remind people…everyone (so please take heart dear reader)…that there is NO cure for congenital heart disease. Yes…there is surgical intervention for those defects that are less complex.  But, for the more complex cases, like my Evan, there is only hope for an extension of life with these operations.  And even then, there is a high percentage that lead to transplant or heart failure.

Then what?


We are told to live our lives.  We are told to give ourselves normal.  We are told to hold onto hope.

So, we all try.  And I keep hearing the further out you get from surgery…the easier it is to find that normalcy.

Our situation is a little different…since now we get to face craniofacial surgeries.  So, our “normal” is still in the works.  It’s also a bit different because Evan’s heart is so incredibly unique.  I don’t really have statistics to look to…although I try to avoid them at all costs.

While I try and live my life everyday – to give my family and my boy the best part of me – I am praying so hard for just peace in all of this.

It’s a difficult situation to be in.  I see my boy who is doing well despite all he’s been through.  But, I also am witness to a child’s death at least once a week.  I give into temptation of the internet – researching and reading about all those things that can go wrong – needing to be educated so I can advocate for Evan – yet I end up many times clutching him and holding him in fear for “what could happen” instead of clutching him and holding him in gratitude “for what’s already been promised.”

I’m battling with “survivor’s guilt” – not fully understanding why God spared my son and not another’s.  Yet, I tread lightly on this victory, knowing full well that God can call my boy at any time…but even that…is a victory for God.

My heart is mauled with what my family has – is – going through.  My heart is dinged every time I hear of another family losing their child, a child battling for their life, another newly diagnosed baby.

So peace…I’m praying for it and the Enemy is strong…it has powerful arsenal…playing on my weaknesses.

But, I thank God that He’s stronger.  I thank God that, although I’ve failed time and time again to be faithful to Him, He’s been faithful to me.

In my efforts to achieve the peace God is trying to give me, I need to stop giving into the things that I think are “helping” me achieve it….

And that’s information.  I truly believe there comes a time when you need to step away from the facts and let faith take over.

I believe I’m there.

I know my boy better than anyone out there. I know what our next stage is.  I know what to look for until that time.

I’ve convinced myself that knowledge is power – which it absolutely is – there is no way Evan would be doing this well if it wasn’t for the insight I have on his condition – thanks to the research I’ve done, the incredible advice and intellect from my fellow Heart Mamas, the opinions I’ve sought out, and the constant barge of questions I give to each doctor that has laid hands on my boy…

But, knowledge can also cloud your ability to just enjoy the moment.  Instead of seeing your child and seeing his smile…you are dissecting every breath, every little thing…needing something to go wrong…so your “knowledge” can be validated.

I’m done.  I’m done for now….I can’t continue to sabotage my everyday with my boy.  I suck the joy out of the day by my need to “know” more about Evan’s heart instead of nurturing him and feeding his soul.

I think this small step will lead me to the peace that God is trying to give me…He desperately wants us to have it…all of us.

So…I’ll stow away those facts, package up all the articles I’ve read, tuck away all the information I’ve stuffed in my puny little brain…and keep them way in the back until I really need them to be on the forefront.

Now, I’ll enjoy my boy…and in that…find the peace that God has been waiting patiently for me to have.

“And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”  Philippians 4:7

“I have told you these things, so that in me you may have peace.  In this world you will have trouble.  But take heart!  I have overcome the world.”  John 16:33



  1. Love your heart friend, and I’m praying for your boy!