I can and I will

I loved the movie, “The Help”

I loved the part where the maid would speak daily affirmations to the sweet little girl.

“You is smart.”

“You is kind.”

“You is important.”

I started doing something similar to Iz after I watched the movie.

I tell her daily.

“You’re smart.”

“You’re kind.”

“You’re unique.”

“You are loved.”

I wasn’t sure if she actually understood what I was saying or if it really affected her in anyway.

But, randomly, she’ll come up to me, give me a hug and a kiss, and say, “Mama…I’m smart.  I’m loved.”  Beaming with pride as she says it.

And I love that for her.

I love that the words that I speak to her and to her heart  seep into her soul.  Strengthen her spirit.  Build her up.

I decided to start doing that with Evan the moment I found out we were having his open heart surgery.

I cry way to much.  And, yes, friends, I get that I’m “allowed” to.

Maybe I’m just crazy…but I know my boy feels my heart break every time I look at him with tears falling.  I know he senses a change in his Mama.

So, I decided…in the next few days before the big day…I’m going to muster up all the strength in me to build up the strength in him.

I wish for anything that I could take his place on Monday.  I wish for anything I could bear the pain…wear his scars.

But, I can’t.  It wasn’t my purpose in this life to bear those wounds.  And I’ll never, ever, ever understand why it is his…

And I tell him…”Your beautiful scars…wear them proudly, son.”

I try to picture myself as Mary – Mother of Jesus – telling the Son – “Your beautiful scars….wear them proudly, son.”

I bet she wanted to take His place, too…

But, I tell my boy – almost all day long,

“You are strong.”

“You can DO this!”

“You’ll fight through the pain.”

“You’ll fight to open your eyes.”

“I have no doubt you’ll get through the next week and come back better than before.”

“I have no doubt that God will see you through this.”

“I have no doubt hundreds are praying for you.”

“You just fight.  You just fight with all you have.”

I tell him that over and over and over again.

He looks at me with his perfect beautiful eyes, smiles his big ole grin, touches my face…and I can hear him speak to my heart,

“I can and I WILL.”

**********************************************************************************************************************************************

I ask friends to please pray for my boy like you have so diligently been doing.

I know Monday is a big day…many starting school that day.

I’ll pray for good first days of schools for all those with littles starting.  I’ll pray for my teacher friends, too!

 

So…today…I’ll give you my list of prayer requests.  Share them with all you know…keep them in mind this weekend if you don’t mind.

– Pray for a quiet, uneventful weekend and that Evan stays healthy.

– Pray for a successful surgical repair.

– Pray for wisdom for his surgeon as he makes the decisions on which direction to take for Evan’s repair – a full repair or staged repair.

– Pray for his surgical team – the nurses, the anesthesiologists, the cardiologists, everyone.

– Pray AGAINST – stroke, clots, bleeding, infection, arrythmias

– Pray that God protect Evan’s vital organs and his brain during the surgery, while on bypass, and in recovery.

– Pray that Evan is able to come off of bypass successfully and that his heart beats strong.

– Pray for an uneventful recovery.  Again…pray he stay infection free.  Pray AGAINST – stroke, clots, bleeding, infection, arrythmias. Pray for protection of his vital organs and his brain.  The recovery is just as critical.  The first 72 hours are very, very rocky and we need Evan to pull through those hours…which he will.

– Pray for his ICU team – that during those critical hours- they make smart and quick decisions to help my boy get back to his best self.

– Pray for peace for all of us – Craig, Iz and I – and for the rest of our family.

– Pray that my boy is protected…is kept safe…no matter what.

 

 Please remember to check his public Facebook site for updates as I receive them during his surgery:

https://www.facebook.com/AMillionHeartsForEvan

Fearless

I started doing daily devotional called “Fearless.”

Funny.

I started doing it the day before we were admitted to the hospital.

Ha.

Ironic.

I started a study to delve into the Bible in search of answers to lead a life “fearlessly” just hours before we took this next step in this journey.

Perhaps….the scariest, most fearful time as a parent.

I would flippantly talk about Evan’s open heart surgery as a time that would be tough.  I’d have conversations about it rationally and openly.  I’d do it all with a smile on my face, with such hope, with such faith…

It’s easy to talk about something so difficult when that something is so far, far away.

Now…we’ve run headfirst into the thing I’ve been fearing the most.

The moment is right in front of us.

My Goliath is standing over my head.  Breathing down my neck…taunting me to act in haste.

I am shaking.  I am fearful.

This giant of an open heart surgery has me shaking in my flip flops.

There is so much I have to fear…every complication.

Arrythmias.

Infection.

Bleeding.

Clotting.

Stroke.

The list goes on and on and on.

There is a percentage tacked on to each of these complications.

But, like I tell my family…and what Craig and I tell each other…

Without a heart surgery….there is 100% chance we will lose Evan.

So, we have to gather our weapons – hope, faith, prayer, our unconditional love for our boy  and get ready to face our Goliath head on.

What’s so hard as a parent in this moment, is that we want so desperately to have some control when we fight this battle.

And in this moment, we have none.

Zero.

Zilch.

And that’s a scary, scary thing.

The biggest Goliath of all….not the heart surgery itself, or the recovery…but the unknown.

I did what most people do when facing something so great, so ominous.

You look for answers everywhere.  You look for solutions to combat the Giant.

You turn to friends for support.  You turn to those in similar situations for insight.

In Evan’s case, we consulted with the best cardiothoracic minds in the nation – arguably – the best in the world.

We got everyone’s input.  Have heard everyone’s opinions.

Everyone  making this Giant of a heart surgery…just that much more fearsome.

Every morning since we’ve been in the hospital, my Evan and I have quiet time together.

He loves to hear stories read to him.  So, I read the Bible verses and devotionals in my “Fearless” study.

Today, as I looked at my boy,with the incredibly complex, head scratching, things that make you go hmmm kind of heart, and I read the verse that I’m supposed to meditate on…something just clicked in my head.

And like every morning, I lay my hands on his chest, over his incredibly special heart, and I pray over him…often anointing this innocent piece of perfection with my tears.

But today, the verse spoke to my heart.

“See how that I myself am he! There is no god besides me.  I put to death and I bring to life, I have wounded and I will heal, and no one can deliver out of my hand.” Deuteronomy 32:39

I suddenly see the Goliath before me and realize..no matter where I turn, no matter what incredible mind I consult with, no matter what…there truly is only One that heal my boy.

I’ve been asking for so many to give me the promise that, “Yes….we can heal your son.”

I’ve asked the best minds to give me a definitive, “No problem.  We can do it.”

But, everyone won’t give me the definite.

Because no one can promise me healing but God himself.

I’m so tired of reaching for hope everywhere else.  I’ve cried my share of tears as I speak to doctors, nurses, surgeons – in person or on the phone – begging for someone to give me a straight forward answer.

And today, I realize my answer was right in front me.  I’ve had the answer roll off my tongue during my quiet time with my boy.

“…..I have wounded and I will heal, and no one can deliver out of my hand.”

God already told me…He WILL heal.  And no one can take that from Him.

So, as we face this Goliath together..and yes…I say “we” friends…because I know many of you have come to love my boy and are invested in his future….we have to arm ourselves with ammunition to battle the fear.

We have to pray AGAINST all those complications – bleeding, clotting, stroke, infection, infection, infection, arrythmias.

We have to pray FOR all those promises – a fighting spirit in my son, for healing… for life.

This moment, as I wipe my tears again from my eyes, pick myself up and look and see the joy in my son’s eyes, and pray to see my boy’s sweet face and sweet smile radiate back at me after surgery and recovery are behind us…I ask you to help me, in the name of the Holy Spirit..get through these next few days, his surgery, his recovery…with the only hope we have.

I ask you to hold us in prayer.  Hold us in hope.  Hold us up in love.

To do all these things as we fight our Goliath…..fearless.

What should you pray for?

I’ve had many people ask how they can help me if they don’t pray.  I respect their honesty.  A relationship with God is so personal and it’s never my place to tell someone, “you need to pray to God” – it’s only my place to live my life in a way that is one of example for others to live their life. I can only hope and pray that what I do as an imperfect person brings someone to my perfect Jesus.

So, if you don’t pray.  Send love and light our way.  Think positive thoughts.  Picture my boy going home with us, back in his bouncy chair, squealing with excitement when Daddy gets home.  Envision him saying his first words, see him crawling, seeing him walking, see him on his first day of pre-school, see him on all his first days of school, see him get married, see him having his children.

So…friends…if you pray…what should you pray for (and if you don’t….picture all these things as I do…and smile as I do with joy and hope)….

Pray for a messy, cluttered home…because it means I have my two littles still with me and I just can’t keep up with the cleaning regimen I used to complain about.

Pray for medical bills that pile high…because that means my boy has made it past this surgery and we are on to the next one..whether it’s another heart surgery or his cleft surgeries.

Pray for battles on the phone with insurance companies, medical supply companies, therapy companies…because that means I still get to fight for my boy who’s here thriving.

Pray for exhaustion and sleepless nights…because that means I was up at night with a little boy who decides 3am is playtime or I’m up doing a feed or giving a medication.

Pray for sore backs….because that means that my boy is gaining weight and thriving and he still loves cuddles and being held…which take  toll on our backs but fill our hearts.

Pray for packed schedules…because that means my weeks that I use to dread are filled with doctor visits and therapy visit…which means he’s still here.

Pray for tired feet, sunburned faces, exhaustion filled tantrums, and empty pockets…because that means my family of 4 has gotten to go on our dream vacation to Disney World as a celebration of a successful heart surgery.

Pray for football games.

Pray for cotton candy at the ball park.

Pray for Puffs and Cheerios stuck in floor boards and car seats.

Pray for Lego towers and Tonka trucks to riddle our home.

Pray for piles of laundry filled with dirty onesies, bibs full of drool, and towels that have cleaned up spit up.

Pray for all the firsts I’ve yet to witness with him…words, steps, “I Love You Mama…”

Pray for the little things…because that means the prayers and the positive thoughts for the big things….

—the successful open heart surgery by his surgeon and care team

—the protection of his vital organs and his brain

—the recovery free of infection and complication

 

…have been answered.

 

How do you pray?

I’ve been asking for prayers so much lately for my boy.

The past few days we have been in the hottest part of the fire pit.  God is pounding on our faith with great force of a blacksmith.

We know we are being refined…it has to be it.

This is the moment where I either give it God or turn from Him.

I want so badly to be angry.  I do.  The Heartland has lost too many babies recently.  My knees are calloused from my praying position.  My hands folded together almost most of the day in prayer.

And yet…we have still lost these innocent babies.

Going into Evan’s open heart surgery with the images of his warrior buddies who are now angels  on the forefront of my mind has made me physically ill.

Sick with sadness for those parents.

Sick with unimaginable fear for my own little one.

It brings me to the question..how do I pray wholeheartedly in faith…with no doubting…for something these parents prayed for for themselves…but God’s answer was not the same as their prayers?

The gut wrenching answer…you don’t.

I will pray and pray and pray…and beg you to pray and pray and pray…for Evan to come out of his surgery better than he went in.  I will pray for the surgeons, the care team. I will pray for an uneventful recovery free from infection.  I will pray that all of his vital organs and his brain stay safe during the surgery and recovery.

All of these things I pray for….all of these things I so desperately want and need prayers for…all these things God hears from all of our mouths and hearts…all these things to show His glory…..the coming together of hundreds in prayer for my son…all of this to glorify His name and His name alone….

The outcome….His answer…must be for His glory…and not mine.

Do you realize how hard this is for me to write?  For me to even begin to utter?

I do not want Evan to die.  No way.  No way. No way. No way.

But is the possibility there?

Yes.

We have run out of options for my boy.  He’s already on oxygen.  He’s a chunk and half.  His heart isn’t right.

He needs a surgery.  An open heart surgery that is complicated, complex, difficult.

Without it…he won’t make it.

But with it…he could will have a full life.  I know it.

Life isn’t fair – especially in the Heartland.

Do not tell a grieving mother that her son’s/daughter’s fight has brought glory to God and expect her to raise her hands to the Heaven’s and say, “Woo hoo!”

Do not tell me to “just” give Evan to God and let Him be in control?

I “give” Evan to God everyday…every moment…and then I take him right back into my heart and arms where I want – need – him to be.

It’s an unbelievable predicament I find myself in.

Wanting God’s will to be done in our lives…but asking God that His will be the same as my prayers.

But, I do…I have to pray these prayers.

I have to hold onto the faith and hope that every word uttered, every heart crying out, and pleading to God to spare my son…to return him to me better than I when I hand him over to the surgeon…

I have to cry out to the Holy Spirit to intercede for me when I have nothing left in me.

I have to believe that my son’s fight and this ache….will be for the better and the good of this world.

I have to do these things because I believe – for better or worse – that Evan’s page in the history of this world is not yet done being written. That this moment – as I look at my boy in his hospital bed – that this moment will bring Glory to God and peace to my heart.

I have to do these things because as helpless as I feel right now – unable to fix my boy – I know that someone out there can.

My surgeon is only the avenue for healing.

My boy is only part of the puzzle with his fighting spirit.

My God is the only one that can truly heal.

So, I pray.  I pray for God’s will to be the same as my prayers.  I pray for peace for those who have lost their children this week.  I push out the fear and replace it with hope.  I pray because it’s all I have.  It’s all I can do.

How do I pray?

I just do.

Because it’s all I have left.

 

 

 

Pressures and prayers

“So, Mom….how has his oxygen been at home?” the nurse today asked during our normal visit.

“Umm…around the normal range for him.  Just a few dips into the 60s…but never for a long period of time.  He’s been active and playful as always!”

Her brow furrowed.

I knew something was wrong.  I could feel it in my gut.

After 2 oxygen probes, position changes…our squealing boy….the one who has reached milestone after milestone…the one who keeps surprising doctors with how well he’s been doing…gave us another surprise.

Evan’s oxygen level was much lower at our visit than it had ever been at home.  So much lower….our super conservative cardiologist said something radical,”Guys…it’s time we move forward with things.”

Things?

The kind of things that makes every heart mom take deep breath because suddenly all the wind has been knocked out of us.

Tomorrow, my Evan will have a heart catheterization to check pressures in his heart.

Tomorrow, my Evan will finally reveal to the us what he needs.

Evan’s complex heart condition poses quite the conundrum amongst the team of the doctors here.

He has defects that when separate….are repairable without any issues.

But, when you put them together…well…it complicates things.

Everyone’s hope is that they will be able to do a full repair surgically in one big surgery and then later down the line…tweak things a bit if needed.

But, we have to keep an open mind about what plan B can be.  And that is a staged surgery – one happening now and another one happening in the next few years.

But, we can’t forget about plan C.

Plan C happens when the surgeon opens ups my son’s heart, assesses what he sees, and then goes from there.

Yes.

You read that right.

Sometimes Plan A and Plan B are thrown out the window once the surgeon gets his hands – literally – in the case.  And then…the mind takes over the matter.

My surgeon – who I’m asking to perform a miracle on my boy – will have to use every God given gift to save my son.

And…all of this? The plans…all depend on tomorrow’s heart catheters…the pressures in his heart…in his valves…

Oh the pressures.

I’m at a loss for words right now.

I can barely breathe.

I miss my boy’s smile.  He’s been upset since he’s been poked and prodded all day.  He looks around and doesn’t understand why sister isn’t around.  Why did Daddy leave?  Where’s my sport’s mobile?  Why is Mommy crying so much?

I miss my best girl.  I miss her attitude already.  I am trying to hold onto the sweet moment when she came barreling into his hospital room today and Evan smiled his big ole grin for the first time in hours.

I miss my best friend.  Craig’s aching heart and his tears today as he held his boy broke my heart further.  I’m not sure what he whispered in his son’s ears but it’s a special secret between the two men in my life.  As he left tonight with Iz…my heart ached as he wiped his tears once more and picked up his boy and said, “You take care of Mommy tonight.  You’re my champ.”

We don’t know how long we’ll be in patient this admission.

The plan…is for Evan to have his open heart surgery within the week.

Oh the pressure.

So, as I sit here and type…no tears since I’m depleted…I beg and plead for prayers for my boy.

I beg for prayers for a successful cath tomorrow.

I beg for prayers that Evan stays free from complications.  He will be intubated and under general anesthesia during the procedure.

I beg for prayers that he recovers well that he able to come off the ventilator with no issues and infection free.

I beg for prayers that the surgeon, the intensivist, our cardiologist come up with a plan that will give my boy many years with us.

Because friends…please remember…every prayer for healing…every prayer for my son….is just an extension of the prayers for me, for Iz, for Craig…for his family that he loves to much…for our friends who are so invested in our lives and love our boy like we love him….

You’re praying for so much more than just him.

You’re praying for the piece of our family that makes us whole.

I’ll be updating as often as possible.

I would be in your debt if you could share our story and have others pray for Evan.

I’ll be doing the best updating I can on here but I will update on Evan’s prayer page on Facebook:

https://www.facebook.com/AMillionHeartsForEvan

 

Thank you for your prayers.

Hypocrite

That’s what I am.

I say one thing – and do another.

I pray so hard everyday.  I talk to Iz and tell her that her baby brother is going to be ok – that the doctors are going to fix him.

I tell God that I trust Him.  I tell God that I know He’s in control.

I’m lying to myself, to everyone, to God.

 

Because although I pray – I have such a hard time believing it all.

When I see Evan smile- I am calmed for a moment.  I pretend that he’s healthy.  I even picture him completely normal.

Denial-ville is a great place to live.

Then the next second – I am in gut wrenching agony.  Really – emotional pain so great – it actually has made me ill.

I tell Iz that all will be well – then I comb the depths of hell internet for every complication, every scenario, every bad outcome.

I tell my friends and family who are calling and checking on me – that I’m fine.  That everything is ok – and really – it’s the exact opposite.

I raise my hands up in church during worship, tears streaming down my face, nodding in agreement with our pastor as he preaches about the Gospel.

I walk out the doors of corporate worship feeling renewed.

I write emails and blogs and update statuses on Facebook with Bible verses, words of encouragement for others, positive messages of hope to uplift those who need it.

 

I smile when people say to me, “Oh you are so strong.  You have such faith…you inspire me to believe like you do.”

I smile like a habit.  That smile is not the light shining bright inside me.

 

Friends – I don’t know why it’s so hard to pray.  It should be the easiest thing to do in situations where God is beckoning – begging – me to seek counsel with Him.

It’s easy to pray when it’s good.  It’s easy to say our nightly prayers, spout off inspiring verses from Psalms or Proverbs, say, “I’ll pray for you.” for someone in need….when the grass in your yard is nice and green and manicured.  When life around you is seamless and perfect.

 

I need to clarify something before I go further.

My boy is perfect.  I don’t question his perfection or that he was God given.

Our situation is not.

What I question is “why” our situation is what it is.

What I question is why so many in the Heartland are on the brink of losing their babies?

What I question is why my innocent boy has to have his chest cracked open and endure pain of many, many surgeries to correct his face.

What I question is why crack addicts push out bouncy, babies…healthy…nonetheless….when I did EVERYTHING right…

 

To say my faith is being tested is the understatement of the century.

I get tested every moment of the day.  I’m scared to fail this test.  I desperately need “Faith for Dummies” or an About.com article on “How to live with unwavering faith.”

Parts of me are getting bent during this time of refinement that I’m sure they are going to crack….if they haven’t already.

 

Does God still hear my prayers – the ones I pray fervently for others, for my family, for Evan, for me – despite my doubts?

My doubts a myriad of questions, yet again…

God doesn’t owe me a thing.  He doesn’t have to prove Himself to me in anyway.  That’s not what it’s about.

I don’t want to be a Christian that feels entitled.  I don’t want to feel like God need to give me something even though I don’t deserve it.

 

Not even a week ago I posted about God’s divine appointment in my life when I encountered another soul needing direction.

Now here I sit….3am… my heart heavy with pleas to God for healing for so many who need it.  My heart heavy as I watch my boy sleep…smile in his sleep…probably dreaming about his feeding pump…and realize that all too soon…I’ll have to walk down the sterile halls of the hospital and hand over my boy to the surgeon.  I’ll have to look that surgeon in the eye, beg and plead with him, and say, “You treat my boy like he’s your own.  You keep him alive.”

I almost felt this moment would be here.  This time of doubt.  This time of trial.

I had started to become complacent in my faith again. After all….we’ve been home for awhile now.  Evan looks pretty good considering he has to have open heart surgery in less than 3 months.

 

It’s difficult to grasp and truly explain why this stuff happens.  My friends who are non-believers ask me over and over again “why God does this”?

This being the hard stuff.  The kids on life support.  The new diagnosis of heart defects, autism, cancer.  The babies dying.   The marriages collapsing.  All the horrible stuff you read in papers or see on the news.

And I reply, like I always do, “God doesn’t DO any of this.  He is not vengeful.  Doing something and allowing something to happen are completely different things.”

God is good.  All the time.

Life is not.

I love my kids more than life itself.  I will love them.  I will protect them with all that I am.  I will give them directions on how to live their life.  I will do all of these things….but my sweet littles will have a choice to do what is right…to be obedient.

Or not to be.

Doing things my way would be the easiest thing for Iz.  But, she still has the ability to make the choice.  I can intercede at anytime…make it easy on her.  Often, I don’t.  I let her make mistakes.  I let her live her life.  I love her despite her faults and her poor choices.  My love for her isn’t any less if she doesn’t believe me when I tell her to trust me.  This is the only way she’ll learn.  This is the only way she will build character.  One day, she’ll believe that all the things I tell her to do are for her own good.  One day…she’ll understand.  Just not today…when she is so young.  When she is questioning every move I make, every move she makes, every boundary I put up.  She tells me she loves me all the time.  She sings songs with me and dances with such happiness it’s contagious.  But, when she doesn’t get her way, when I make her do something she doesn’t want to do…her saying those three little words of “I love you” are hard…she’ll begrudgingly do it but her heart isn’t in it.

That doesn’t make her a hypocrite.  My toddler doesn’t understand everything yet.  She’s just young and testing the boundaries of her life as she knows it.  She’s learning to trust me…the person that loves her the most and wants nothing but the best for her.

I guess that doesn’t make me a hypocrite either.  It just makes me young.  Still a baby believer who is testing the boundaries. Asking the “why” questions over and over again (like all kiddies do). It makes me a child that still doesn’t understand so much.  I’m like any other person who finds it easy to praise and pray when the sun is shining but oh so difficult to raise my hands in praise when the storms are all around me.

As my heart aches today, as question after question floods my mind, as I ask for forgiveness for my doubting,  as I try to do things my way yet again…it’s time…for the thousandth time…I do the only thing I can do..and that’s raise my hands – not only in praise- but in surrender.

And as I raise my hands to sky…I ask that God envelopes me in His loving arms in love and hope, take away the hurt and the doubts…and like all good parents do…and just make it all better.

 

 

 

For another

“I’m at a payphone trying to call home, all of my change I spent on you!”

I sang at the top of my lungs and driving on the highway visit my OB.  I was desperately willing the movie gods to consider Adam Levine to play Christian Grey in the “Fifty Shades” trilogy.

*Sigh* A girl can dream…

I made the turn I had made many times before, into the medical plaza that was home to my OB that has been taking care of me since I was 18 years old.

Suddenly, my heart started to pound.  I couldn’t breathe.  My hands were sweaty.  I could feel tears starting to well up.

I quickly parked my car.  Turned up the air.

Why was I sweating?

I searched my purse for my phone.

Why were my hands shaking?

I dialed Craig’s work.  Needing to speak to him. To someone.

I was having a panic attack.

After a few tries, he finally picked up.  I could tell from his voice that he was having a doozy of a work day.  And he could tell from mine, something wasn’t right.

He told me to calm down and it would be ok.

I took a deep breath.  Closed my eyes.  Undid the seat belt and made my way through the doors of one of the last places of normal before our world was turned upside down with Evan’s diagnosis.

I was transferred to a high risk OB when we found out about Evan’s diagnosis.  Dr. M wasn’t equipped to handle the care I needed for – my then – unborn son.  I remember sitting in the exam room, Craig by my side, looking at the man that had brought my perfect daughter into this world, and saying our goodbye’s.  Leaving a man I trusted to care for me and my unborn child to someone I didn’t even know…just the first of many sacrifices I made on this heart journey for my boy.

The familiar scent of his waiting room, the dim lighting, the TV blaring the “Cooking Channel”…all brought back memories.  I couldn’t believe it hasn’t even been a year since I walked out these doors to my new life.

The staff recognized me immediately.  All their hellos a bit guarded. The last time I left this place I was inconsolable.  The outcome of my son’s birth was grim.

I signed in and Dr. M walked out to the office area to ask his nurse a question.

He said hello…did a double take…put the chart down that was in his hands, came over to me and said, “Girl…you are on my short list.  Do you know how worried I have been about you?  I called you everyday for a month and not one call.”

He looked at me, his eyes kind and smiling, then he enveloped me in a hug – he’s always been like a dad to me – and the tears started to fall.

“I know.  It’s just been hard.”

He hugged me tighter and said…”I know, it. We’ll talk more inside.”

I was in the exam room.  All too familiar.  My stomach in knots.  Persistent post traumatic stress disorder rearing its ugly head at this visit.

Dr. M walked in.  Sat down and started to talk.  He told me about a patient he was extremely close with – delivered both of her babies – and was now pregnant again.  She changed doctors to someone else.  He told me the last baby he delivered for her had Trisomy 18 – a chromosomal disorder that is not compatible with life. She could not walk through his doors again.  There were too many bad memories in his office for her.

He told me this, looked me in the eye and said, “What I’m getting at is…I know that it took a lot of courage to walk through those doors today to see me.  I know that when you are sitting in this room you don’t have positive thoughts since the outcome wasn’t what we were hoping for.  I will understand completely if you need and want to change doctors.”

I looked at him, adjusted the hospital gown that was covering up my lady bits, and said, “Thank you for that.”

I pulled out my phone, found the latest video I took of my boy and said to him, “This isn’t the outcome we thought.  But, look at him.  He’s such a blessing.  You gave me Isabelle.  You directed me to the best place for Evan.  There are a lot of bad memories, here, yes….but so much good too.”

We chatted more about how I was doing.  He asked question after question about Evan and about his future surgeries.  I showed him picture after picture of him. I’m sure I was radiating pride for how far my son has come.

I looked at him again, this time more tears, and said, “I can’t believe not even a year ago I asked you to give me information to terminate this pregnancy.  I can’t believe that I uttered those words to you.  But, you said words to me that I’ll never forget.  You said, ‘There is a lot of unknown and it’s scary.  But, so many times….these unknowns turn into such blessings.’ And you were right.  I wouldn’t change Evan – he has taught me so much about faith, about love, about hope.”

He stepped out to pick up a phone call and came back in.  His eyes were bright and said, “What a coincidence.  A mom just stopped by as I was taking a call to show me her baby girl I delivered 3 months ago.  She was born with an undetected heart defect.  The baby was lifeless at 3 days old and rushed to the ER.”

“Is she still here?  I’d like to say hi if she’d like to met me.”

He looked at me and said, “I kind of thought you would.  So…she’s waiting for you.”

We finished my appointment and Dr. M walked me out to the parking lot and made introductions.

I met mom to Daja.  A beautiful, baby girl with jet black curly hair donning a pink dress and pink bow.

Dr. M excused himself and left me and the other Heart Mom on the side walk.

I gave her a smile and said, “I’m so glad to meet you.”

I told her about my boy.  About his care at Children’s Medical Center in Dallas – a little back story to my heart warrior.

She told me about her daughter.  Our children share some similar defects but her daughter has another rare heart condition – Hypoplastic Left Heart Syndrome (HLHS).  Mom to Daja told me that she has undergone one heart surgery and will be having her next heart surgery in the next month.  Two open heart surgeries at just 4 months old…

She told me that Daja was on life support for 3 days.  She told me the doctors weren’t sure if she would make it.  She said she always believed that her daughter would pull through…and she did.

I told her about the amazing support group called “Sisters by Heart.”  A group that connects women from all over the nation with children of babies with HLHS.  I told her about my Facebook family of Heart Moms.

She stopped me mid sentence and asked, “How old is your son?”

“He’ll be 7 months old in about 2 weeks.  He’ll have his open heart surgery in a couple of months.”

She looked at me with tears in her eyes and said, “I want to be there.  I hope to Daja will get to 7 months.”

I looked at her, wrapped my arms around this complete stranger, and said, “Don’t give up hope.  Don’t lose your faith.  I know how hard this journey is.  I know how tired you are.  I know how overwhelming all of this is.  I know how scary the unknown is.  But you need to fight for her – every step of the way.  You fight.  And you pray.  There is always hope.”

She held onto me.  She hugged me tighter. I could feel her body shaking in sobs.  I could sense the exhaustion, the worry, the anxiety.

As I embraced this stranger in the 102 degree heat of the Texas sun and I spoke words to her I desperately needed to hear myself….I realized that I had found a strength in me I didn’t know I had.

I was the hope for someone else today.  I may have been the answered prayer to her plea, “God….can I do this?”

I had to push aside my doubts, my fear, stop wallowing in my self pity to be the light for someone else.  I finally stepped outside my self absorbed world of all things Evan and all things me to see the ache, the hurt of another warrior and her mother.  I stopped – even for just a moment – and saw God answer a prayer for me.

I have been praying for my soul to be rejuvenated.  I have been asking God to show me some hope.  My days lately have been beginning and ending with me in puddles of tears – over anxious, worried, hopeless.

I’ve been waiting for God to show me something.  Help me to see that these prayers, all my pleading – are being heard – are being answered.

And today, when I finally stopped and just did the only thing God asks from me…to be the light for others…is when I truly felt the hope in my heart.

As I prayed over this stranger and her daughter Daja – now linked to my heart forever – as I professed healing for this little girl – as I comforted the lost and tired soul of another – as I stopped focusing on on my son – and suddenly became more like the Son  – is when God opened my heart to His promises for me.

The words of hope and faith I whispered to her…uttered to my heart as well.

 

 

 

Choosing

Craig and I took both kids to see our pediatrician yesterday for their routine well visits.

Iz is looking great – 3 years old and full of attitude personality.  Although her heart and lungs sound great, we are contemplating on getting an ECHO for her just to make sure her heart is healthy.  Supposedly, congenital heart defects aren’t genetic, but there are too many kids out there who drop to ground during sports with undetected CHDs.  So, with our Evan…Craig and I are erring on the side of caution with our best girl.

Now to our boy…

Evan is growing well. He’s such a rock star.  Seriously.  Weight gain is normally an issue for babies with heart problems.  Evan is 17 lbs 8 oz and 27 inches long….he’s in the 50% and 90%, respectively, on the growth curve.

And he’s doing all this growin’ with a heart that isn’t quite right.

Told you he was a rock star!

Now…for some surprising news.

Our doctor did a thorough exam and found what could be an inguinal hernia – a hernia about midway between his special, erm, part and his abdomen.  Awesome.  So, if it is a hernia, my boy will have to have – yup – you guessed it – another surgery – to correct it.

I probably sat in his room while he was napping in the dark listening to music and crying after his doctor visit.

I also probably just watched him sleep off the pain of the vaccines and maybe I cried uncontrollably and kept asking over and over again…”Why this too, God?”

Ok…so not probably…

It’s “little” – the hernia –  in the grand scheme of things but it still has to be removed …IF that’s what it even is.

Craig was working from home yesterday so he was in his office (aka – our kitchen table) when I walked into the kitchen – tears streaming down my face, nose running, red faced and splotchy – I’m one sexy, beast.

I suddenly blurted out, “I hate this for him.  I don’t get why he just can’t catch a break!”

And then I walked out of the kitchen to go wake up my sleeping son so I could have a cuddle.

I walked back into the kitchen, he looked up from his computer, and simply said,”He did catch a break.  He got us as parents.”

And went right back to work.

I stopped crying and thought about what he said.

I started reading a morning devotional to guide my day.  Since Evan’s birth, I’ve been neglecting my quiet time and reading the Bible.  Part of it was exhaustion and claiming I didn’t have the time. Yet, I always found time to watch some quality programming on T.V. – like “Overboard” on TBS (best.movie.ever.) or running to the gym for an hour at the Club aka Zumba.  The next part is hard for me to admit…but another reason I’ve been neglecting me time, is that I’ve had some anger in my heart amidst all the praising and praying I’ve been doing.  I’ve had to really, really fall to my knees and ask God for forgiveness for the hard heart that’s been occupying my body.  Thank God for his forgiveness…I’m not so good at that part.

One thing I forget is that I DO have a choice in how my everyday looks.  I can choose to look at the negative, dwell on the scary stuff we are approaching, agonize and worry with dread over the things that I’m most fearful of….

Or I can choose to look at my everyday for what it really is – lots of laughter, singing with hearts full of joy – albeit songs that aren’t really “praise and worship” but “Call Me Maybe” out of the mouth of my 3 year old is pretty awesome, seeing Evan grow and change, watching him sleep in our home…in his room…in his crib…., getting another day to love this little, chunka-chunka-burnin’ love wholeheartedly.

Craig is right – Evan was placed in our hands and our hearts – because God knew we’d take the best care of him.  Yes, it’s hard work.  Yes, it’s emotionally draining at times. Yes, I still don’t know what the future holds.

But, he is ours.  Evan is the son we prayed for.  People always saying how lucky he is to have us.

Ha.

Wrong.

Craig and I – it’s us – we’re the lucky ones.

So, here we are.

A possible three months until his open heart surgery, a possible unplanned surgery to correct a hernia, surgeries – so many, so many freakin’ surgeries – to repair his cleft lip and palate (oh how I’ll miss his smile that goes for miles…)….

My Evan is such a fighter and as much at hurts my heart to think of all that is up against him….

I have to choose to see all these things as such incredible blessings.

All these things to give him a chance to have those firsts I talked about before…first day of school, first love, first kiss, first heartbreak (that stupid, harlot…how dare she hurt my son…sorry…getting ahead of myself) and to live a lifetime….

Perhaps today is just one of those days where I’m at the top of the roller coaster.  Perhaps, I’m growing up, too, in this journey.  Perhaps, all of those prayers so many of you are praying for us are finally reaching my heart that has been so hard for so long.

I’m not sure.

But today, I choose to see the good.

 

 

Moving Mountains – Happy 6 months!

Today is a special day.

My Evan turns 6 months old today.

He’s been in our lives for a half a year.

Time flies.

There were many moments in the first few months where I wasn’t sure if we’d get to see this milestone.

I cringe at the thought.

There are moments, still, where all I do is pray that we’ll see our boy celebrate his 1 year old birthday.

I pray for birthday hats, streamers, balloons.

I pray for cake and ice cream, mountains of gifts, everyone singing loudly…a little off tune…but the song still sounding like the most beautiful melody out there.

As a Heart Mom, I’ve realized our wishes for our children don’t span very far.

My wishes for my boy are so different than what they are for Iz.

I pray differently for him than I do for her.

Please don’t see this as pessimistic…

Because my prayers, though seemingly simple and almost absolute for healthy children, are the spoken prayers on every Heart Mamas heart.

Until yesterday…I prayed differently for the both of them.

I understand that everyone’s eternity is only a heart beat away.  That fact was solidified in the horrible tragedy of the Colorado shootings.  Lives were taken in a senseless act.  Children were lost.  Parents are mourning.  People are seeking answers.

While my prayers for Evan are still very different – prayers for a successful open heart surgery, prayers for an uncomplicated and smooth recovery, prayers for healing, prayers for successful repairs on his cleft lip and palate…

I also pray for first words…first steps.

I pray that I get to witness these milestones like I witnessed the milestones my boy has reached so far in his first 6 months – first heart surgery, first (and second) heart catheters, successful recoveries….

First sounds of cooing, first sounds of laughter.

First bath, first time sitting in a high chair.

First foods – rice cereal (yuck), broccoli and peas (yum!), applesauce (yuck), avocado (yum!)….

Rolling over (just once…but it counts!).

Sitting up.

His pudgy hands touching my face over and over again…like he’s trying to tell me…”I know you love me.”

His legs kicking in excitement when he sees my face.

His smile without limits that brightens up my day…and almost anyone’s day…when I walk into the room.

I don’t remember praying for these things with Iz. I don’t remember relishing in the simple “firsts” I’ve experienced with Evan.

It’s not that I didn’t cherish my girl….they were just absolute for her.  There was no reason to pray for them nightly.  I prayed for first days of school, first loves, for her children and her children’s children.

For Evan…my heart longs to pray for those things too…but that fear – that is not of God – paralyzes me and has me wishing and praying for a future that is a little closer.

My heart is telling me to pray for those same firsts plus more…

And I finally did.

I can’t talk about my faith in God if I don’t walk in the promises he’s made me.

He’s promised me healing.  I will step out of my fear and start praying without limits.

Stop asking God for those “simple” prayers and start asking God to move mountains.

Because my Evan turns 6 months old today.  A milestone I wasn’t sure we’d reach.  A milestone so many Heart Moms who lost their Angel babies prayed for.  Those mother’s – mourning their children in this world – but knowing their children are finally healed.  A milestone so many of us consider just as great as battling through a surgery.

While so much is still left in the Hands of my Creator…we have been given 6 months of heartache, joy, struggles, accomplishments.

Today, I pray for those things in the not so distant future…first steps, first words, open heart surgery, recovery, cleft repairs.

But, today, realizing how time can be taken from anyone – anyone – at any moment – I also pray for those things I was fearful to pray for – first days of schools, first loves, for Evan’s children, and his children’s children.

Because today, as we celebrate my Evan’s 6 months birthday, and as little as it may seem to some, to us…God has already moved mountains.

Happy 1/2 birthday son.

Keep fighting.

Chosen

The past couple of days I’ve been having lots and lots to complain about.

Evan teething.

Evan pulling out his feeding tube.

Not getting his feeding tube supplies.

Being tired.

Being overwhelmed.

It all being too much.

I was at a point today in the car when I just started to break down.

And then I heard a song play on the radio that I’ve heard over and over again.

But, today, it spoke to my heart.

The song is called, “Blessings”

Here’s a few verses that I love.

Cause what if Your blessings come through raindrops

What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

 

I love my Evan so much. I love him so much it scares me.  I talk to him everyday.  Am overwhelmed with the love I have for this little boy.  Am passionate to share his story with others.

All the things a mother feels for her child.

I often forget – all too often – that I need to love someone more.

I am consumed with my Evan.  Forgetting that his fight, his struggle, his life – is not meant for me.

It’s meant for Jesus. For my God that has given me the privilege of being his Mama.

I can’t remember the last time I told God how much I loved Him.

I can’t remember the last time I was overwhelmed with the thought of Him and all He has done and is doing in my life.

I can’t remember the last time I shared the Good News with others.

Because, I’m consumed with my son when I should be consumed with the Son.

As a mother and a lunatic, I feel the need to control so much in my life. And you’d think with having Evan, I would have learned by now, that there is so much out of my control

Some reading this may not know God or believe in God and may look at my Evan as just bad luck.

How sad is that?  That my son, to some, is considered “bad.”

I can’t tell you why God is having my family walk this journey.

I can’t tell you I like it most days.

I can’t tell you that my boy’s story will end up how I want it to …and that’s seeing him grow up to be an adult and live a full life.

I can tell you that I’d rather walk this journey in hope that God will heal him.

I can tell you most I find myself loving my life – no matter how hard it feels – instead of relishing in my troubles.

I can tell you that my boy has had a life full of love, full of hope, full of joy…more so than most adults living their lives in darkness.

 

All too often, I forget that this time of struggle is a part of a greater plan for Evan, for me, for Craig, for Iz, for anyone who knows us, for anyone following our story.

Looking at my boy, I sometimes forget the pain.  Crazy, huh?  Of course I remember the intensity of the moment and the ache and longing for clarity and understanding through it all.  But, there have been times I can feel the joy outweighing the pain.

As we prepare our hearts in prayer for my boy’s open heart surgery, I don’t look at the pain we went through the first few months.  I look at the after.  I remember that God saw us through that time.

I remember that the pain we felt and feel are nothing compared to the joy we’ve experienced with our boy.

I will have days where and still do have days, where I look at my life, my Evan’s life, our life as a family, and feel that it’s unfair that we are going through this  – the pain, the uncertainty.

I feel like I can speak for the Heartland or for anyone with a special needs child when I say that we would never choose this life for ourselves but know – without a shadow of a doubt – we were chosen by God for our child.

What an honor.