I found myself thanking God for getting us through the other night when Evan struggled after his surgery.

He is still intubated and on a heavy dose of pain and sedatives but he is making slow progress.

Slow and steady wins the race – so our discussion today with both of the attendings in the ICU and his cardiologist was going slow in his recovery since he has been through so much.

He’s still not out of the woods.  My boy has been through 3 planned traumas – yes – traumas.  Anytime you cut and hurt your body – it’s considered a trauma.  And I, his mama, the one who’s supposed to protect him, has consented to 3 traumas on his frail body.

So, pray for him.  Continue to pray for him – diligently, purposefully, whole heartedly.

This morning – I found myself thanking God for getting us to today. And a thought crossed my mind – I didn’t thank Him or praise Him during the struggles.

When I’m in the storm – and painful episode and scary episode are raining down on Evan and our family – I have a tendency to curse God.  Angry, frustrated, resentful…

And, yes, I am human so I’m going to feel those emotions.  And yes, God is a forgiving and loving God, so He is merciful for my shortcomings.

But in the storm, I am learning to praise God amidst it all.

Because fear is not of God – He doesn’t want me to fear anything.  He wants me to rest assured that He’s got it.  His hand is all over Evan’s care.

I don’t want Evan to suffer.  I don’t want him to die.

But, God hasn’t let that happen.

He’s put us in a place where Evan is getting great – phenomenal – care.

His doctors and surgeons and nurses and care team – all top notch.

The dance of emergency – the beautiful and scary dance – they danced the other night was calculated.  Everyone knew their role.  They had an answer to every beep of the machine, every number that dropped.

It’s easier today than yesterday to praise God because today Evan has been stable for close to 24 hours.

But, it’s in the storm that God is teaching me to praise Him.

It’s in the storm that He is trying to hold me, protect me, assure me that Evan is going to be ok.

Today – it’s an easier day.  Today, I can take a breath, even if it’s just for a second.

Unfortunately, with Evan’s condition, we’ll have so many days of storms.  He’s still in the ICU.  His recovery is still tenuous.  And, remember, this is his first surgery – we still have an open heart surgery to pray for, cleft lip and palate surgeries, we have catheters…we have a lifetime of storms.

God is teaching me – through the suffering and the battle of my son – to praise Him.

I refuse to let the Enemy make me live in fear. I refuse to let Evan’s struggle and his fight to mean nothing.

My son is teaching me to Praise God in the storms….let him teach you, too.

So it didn’t work.

The PDA was closed and the catheter team had to pull out.

The interventionalist physician came out of the lab and had a hard time looking at me.

I knew he had tried his best and didn’t want to deliver the news that he had failed.

And now – surgery.

We prayed and hoped that this day would be far in the future but God has other plans.

Evan will have his first heart surgery tomorrow morning at 7:30 AM.

I don’t even know how to pray.  I really don’t.

I’m praying for success.

I’m praying for his surgical team and the surgeon.

I’m praying that Evan does well under anesthesia.

I’m praying Evan’s body tolerates the surgery.

I’m praying Evan stays free from infection.

I’m praying that he has a successful and swift recovery.

I’m praying he stays strong and fights.

I’m praying for Craig and I.

But, what if my prayers aren’t big enough.

What if I’m praying wrong.  I’m scared my faith isn’t big enough.  I’m scared I’m not doing this right or asking for the right things.

I feel helpless.

I’m looking at my son and all I can do is pray and now I’m worried I’m not doing that right.

And I need to do something right for him.

I sit and I pump – making breast milk – for when he recovers but I don’t feel like it’s enough.

Because tomorrow, I will hand over my son to a group of doctors and nurses who will cut him open, crack open his chest, sew parts onto his heart to help it work how it needs to work.

Tomorrow, he’ll have to wake up his body from anesthesia.

Tomorrow, my son will have to suffer in pain while he recovers from heart surgery.

Tomorrow, he will experience pain that I can’t even imagine as he heals.

Tomorrow, his body will have to learn to breathe again.

Tomorrow, I have to ask my son to fight for his life like he’s never done before.

And I just don’t think my prayers are big enough.

I don’t know what to do. I don’t know what to say.  I don’t know how to pray for something so big.

Since I don’t know what to do – I’ll finally have to give it to God.  Because, everything I’m trying to do to fix things – isn’t working.

God – here it is. Here he is.

You’re big enough.

Dear Mary,

I’m coming to you – not because I can’t go to your son – but because you’re a mom like me.

I know you understand the fear I have right now.  The unknown of what’s to become of your son.

When the Angel spoke to you and told you you’d give birth to a boy, His life would hold so much purpose and hope, but yet  God would take Him from you – how did you feel?

Did you feel like I do now?

God has promised me a future with Evan. He has spoken to my heart and shown me glimpses of us as a family – Evan healthy, vibrant, full of life.

Did you live in fear everyday?  Or did you have so much faith that you’d get many, many years with Jesus?

How did you do it?  How did you hold onto your faith with such steadfastness?

I’m sure you’re like me, when Jesus got the sniffles or a tummy ache, you’d worry and panic.

But, I’m sure you still praised God without any reservation.

And, I’m trying.  Please know – that I am.  I can’t express my extreme gratitude for God giving us Evan – despite his heart defect and cleft.  He has given me so much already – shown me so much about living in faith and loving in hope.  Evan has shown so many what a fighting spirit he has.

But, it’s hard.  From one mom to another – you never want to see your child suffer.

But, you did.  You saw Jesus suffer for all of us. You saw Him in pain.  You wiped His tears.  You held your Son during His time of suffering.

I’m trying to be more like you – Mary and more like your Son.  I’m trying to love Evan like you loved Jesus – with hope of tomorrow and the with the promises of a future – spoken by God.  I’m trying to be strong through Evan’s suffering.

I’m trying to be like  your Jesus – showing those that living in faith is worth it, showing kindness to others in their times of need – which being in the hospital I am able to do that much more often – praying with another parent, praying for another child in need, telling others about God and the Gospel through my actions and words.

As a mom, the love for your child goes deep.  So the pain you feel for them is just as great.

Mary, I talk to your Son everyday.  I ask Him to heal my boy.  I ask Him to watch over and protect Him.  I thank Him for all He’s already done for Evan.

I know He’s listening.  I know He hears me.

It’s just so hard, as a mom, to just be still.

So, thank you, Mary.  Thank you for listening to me – from one mom to another.

- Czarina

I’m mad at God.

I promised honesty.

Well – there’s honesty for you.

I am.  I really hate that we’re going through this.

I  hate that my son is suffering.  I hate that his heart will eventually be repaired but he’ll never truly be well.  There’s no cure for a heart defect.  And he’ll (we’ll) deal with hospital and doctor visits – for the rest of his life.  I hate that every time I read about another one of Evan’s heart buddies dying – I fear the worst…

I hate that my daughter doesn’t understand what’s happening and misses us.

I hate that my husband worries for me, worries for Isabelle, worries for Evan and has to deal with the worries of providing for us.  I mean…how can you not get stressed when you receive 22 hospital bills in the mail – in one day.

I hate that I’m stretched so thin between Evan and Isabelle, hate that I feel like a failure as a parent, an unattentive wife.

Hate that we got a taste of home for 2 glorious weeks just to have it taken away from us.

And I blame God.

I do.  Because I’m so mad and so frustrated and at the end of my rope – that I need something and someone to blame.

I know people are trying to be supportive and sometimes don’t know what to say – but it’s really hard for me to hear and digest, “You were chosen for this because God knew you’d be the best person for him.”

Because, I’m not special.  I’m just a mom -  who loves her son so much is hurts.  And I’m just doing what I’m doing out of love.  A mother’s love for her child.

I guess I’m also mad at God because He keeps giving me glimpses of healing.  But, just doesn’t already sweep and in and fix it all.  I know He performs miracles – why is He waiting for so long to already perform it.

I’m mad at God because He keeps giving me hope that Evan is going to be alright but all I see now is suffering.

My heart is hard.  I don’t want it to be.  I also worry that God will be angry with me that I’m so angry with Him – that He’ll take it out on Evan and take Evan from me.

I’m mad. And it’s clouding all the good.

Friends – God isn’t to blame for this.  I’m absolutely entitled to be angry.  And God is a loving God and knows that I’ll be angry at Him.  He’s my Father.  And just like any child – we’ll be angry when we don’t get our way because our parent isn’t giving us what we want when we want it.

But, yes.  The past few days I’ve been angry at God for all of this.

Thank God He’s a better parent than me.

I was brought into the hospital at the perfect time – before Evan really deteriorated.

I believe God’s purpose for me in going to medical school was to prepare me for this journey of having a special needs child.  It helped me steer the Emergency room doctors and nurses on how to care for Evan – because I knew him (as his mother), knew what he needed (from a medical standpoint) – and was able to direct them on what he needed rather than them guessing on how to treat him.

I was given a nurse on the floor that had years of NICU experience – so she was able to see danger signs in Evan that we needed to go to the CICU.

I was given a cardiologist that presented us with the possibilities of surgery.  What are the chances that the cardiologist that was on the floor on Evan’s admission just happens to be the guru of reading ECHOs?  He saw Evan’s anatomy – which is so complex – and contact not only the surgeon but the Interventionalist to find another solution.  A solution that may not mean surgery right away.

I was put next door to people in the CICU – a baby who just had a heart transplant and a baby who is suffering from an infection to her heart and was in heart failure  – and was able to see their journeys.  Their parents – who are going through so much – were able to encourage me. They promised me a light at the end of the tunnel…but reminded me that the tunnel feels never ending.

God keeps working in my life.  And He’s giving me so much good.  I’m just so angry that I’m failing to see it all.

As a parent of child with congenital heart defect, we’re always worried about death for our child.  We’re always waiting for the other shoe to drop.  We’re constantly living in fear.

But, as a parent of child with heart defect, we also treasure each breath and each day more than the regular person.  I say that with confidence because I have a child who is heart healthy – and I never treasured her health and just her – the way I treasure Evan.  We are thankful for each day – just thankful for another day with our child – even if it means they are on oxygen and in the hospital.

I’m angry.  Yes.  I am.

But, the anger is passing.  I’m being brought back to seeing the good.

Evan is in the hospital – but he’s still here with us.

Isabelle is missing us – but I’ll see her soon and she’s surrounded with a lot of family that loves her.  And I know someday, she’ll see how hard I fought for Evan, and she’ll know that I’ll fight for her just as hard – no matter what.

Craig worries – but his faith is strong and he’s able to compartmentalize his worry and move forward.

And I’m trying my best.  Doing my best with what I have.  And all I have is one of me – and I’ll give all of me to Isabelle, Evan and Craig.

I know that home will be waiting for us.  I know that this next year while Evan waits for his repair and is still growing will be long and hospitalizations are inevitable.  But, home will still be there.  And we’ll find normalcy again.

Because for now, the next few months and year, will be some of the hardest times our family will face.  And I know that – I just don’t like having to accept it.

The anger is passing.  God is letting me be angry at Him.  But, I know He’s a loving God.  Because even in my anger, I can feel His presence, begging me to let Him in, give me hope.

Soon…the anger will pass.

I received a really strange comment the other day – that I chose not to publish.  I was asked if my blog was “fiction.”

What a made up story line my life would be.  There are some days where I can’t believe my life is what it is and there are days where I really do wish I was making up the parts and pieces that make my days whole.

I look around Evans’ room and I can’t believe I have an I.V. pole sitting next to his bassinet.  I guess I’m so used to it now – feeding my son most of his nourishment through a tube.  But, when people come in to “meet” him (aka – wave from the his bedroom door wearing a mask…), I see the look of shock, sadness, and surprise in their eyes when they scan his space.  Not only is there a feeding tube hanging from an I.V. pole but there is also a machine to monitor is oxygen and heart rate.  It screams at you when the levels are low or if the sensor falls off his foot – either way – when I hear that monitor go off – my heart starts racing.

Non-fiction – but it sure sounds unreal, huh?  Machines feeding my baby.  Machines monitoring his breathing, his heart, his oxygen.

I can’t even let him cry for more than a minute.  Evan is a lot like his big sister….has no room for patience and has a temper like no other.  But crying really hurts his heart.  It forces it to work harder than normal and that’s not good for my heart baby.

Non- fiction – but sounds unreal, huh?  Not letting a baby cry in fear for their life.

Isabelle’s impression of having a brother – a new sibling – is full of hand washing, mask wearing – and not really understanding why we keep them apart.  I cringe every time I hear her cough or sneeze – I mean come on – it’s the middle of the winter – what 2 year old doesn’t have something lurking in their bodies causing them to feel a bit yucky.  But, I can’t risk Evan’s health.  So, we keep them apart as much as humanly possible and when we do have them together – we are all wearing masks, sanitizing hands, and keeping a safe distance.

Non-fiction – but sounds unreal, huh?  Keeping the two loves of my lives apart in fear one could endanger the other.

This reality feels like fiction.  A story line I never wanted to write for myself – actually – a story line I don’t wish for anyone.

But, like most works of fiction, there are times of trial, dark days, challenges…but almost all end with a happily ever after. I pray everyday to get to tomorrow.  I hope that these dark days are just stepping stones to more times of joy.  Because I do get moments of joy…moments of happiness…despite the hard times we are facing.

Belly laughs from my Iz.

Sweet snuggles from my Evan.

Sitting at the table with my family for meals.

Stolen kisses from my husband.

Housework, laundry, dishes…normalcy again.

Those moments are the “real” I hold onto.

Fiction?  Sometimes it feels that way since my moments of happy feel too good to be true.

Yesterday I anointed Evan with my tears.

Begged and pleaded to God to make him better.

Read over passages in Scripture – searching for an answer – any answer – to why this was happening.

This was the down hill part of the roller coaster ride of my day.  My everyday.

Yesterday morning, I blogged about how well Evan has been doing.  I was truly positive.  Excited about the day – spending it just enjoying him.

And then the afternoon rolls around and his oxygen levels aren’t as good as they normally are.  And the night was worse as we watched the doctors and nurses give him oxygen.

And I lost it.

I don’t think I’m doing this right.  Praying in faith.

Because I don’t want God to take Evan from me – even if it’s God’s will.

I don’t want to watch him suffer – even if it’s part of His plan for Evan.

I don’t want to watch Craig breakdown and have to hold each other all night – even if it’s going to strengthen our marriage.

I don’t want to be the poster child of how to live a life in faith and be an example for others.  I don’t.

I just want to have my son healthy.  I want him to be ok.  I want to have a life with him and make memories like I did with Isabelle.

But it’s not about what I want – and that is so hard to digest.

I struggle more and more – daily lately – to understand why this is all happening.  Why God chose my son to endure this?  Why God chose our family to suffer through this trial?

I don’t have answers.  I only hope and pray that I get a little bit peace through all of this.

Faith is the substance of things hoped for, the evidence of things not seen (Hebrews 11:1, KJV).

I hope for healing.  I hope for a miracle.  I hope for peace.  I hope that my heart will know joy again soon.

Evidence of things not seen…now that’s a doozy.

Because as I struggle with watching my boy suffer, as I struggle with watching Craig wrought with anger and helplessness, as I struggle with the pain and agony of the unknown future for Evan…I don’t see much evidence of hope.

And then I’m pulled back to times of great struggle in my past and see God working in those times.  I also see God not working in those times…but that was His response to my prayer.  And the sheer nothingness of His response was what was so monumental in that time.

But now, I’m praying for big things.  I’m praying for healing beyond understanding.  And I don’t want His response to be “No” even if its His will.

Let me tell you a secret.  I see visions of Evan with Craig.  I see him running in a white polo shirt and little khaki pants chasing Craig in our yard.  I believe that’s God’s little glimpse of His promise to me.  He just needs me to be patient.  He needs me to let Him do His job.  He needs me to surrender it all to Him.

Surrender. I’m here, God.  On my knees.  Pleading.  Begging.

Amen.