I swear our lives are much more than tears and working out.


Looking through my posts, it feels like I’ve been on a streak of lots of boo-hooing and tears mixed in with stuff about me working out and eating clean.

Don’t get me wrong – I cry a lot. Work out a lot.  Eat a lot.

But, our lives are so much more!

🙂

Today is a special day.

My best girl made me a mom on this day 3 years ago.

She initiated me into the sisterhood called motherhood.

She taught me to love outside myself.

She showed me God’s love, God’s power, God’s mercy in her 6 lb 13 oz, 19 3/4 inch frame.

She is the shining light in our home a lot of days.

She is the sweetest big sister to Evan.  She defends her brother to people who ask, “What’s the tube on his face?”  She rushes to his side, scrunches up her face, pouts her mouth and yells, “Don’t talk about my brudder!”

 

She is challenging.

She is funny.

She is loving.

She is fiercely independent.

She is still “just a little big.”

She is Daddy’s best helper.  She makes him cry more than I’ve ever seen him….she has nuzzled a special place in his heart.

She is Mommy’s best girl.  She shows me what pure joy is all about.

She is the best parts of Craig and I.

She loves Jesus.  She talks to God.

She gives me reason to praise His name despite all our family is going through.

We love you, Bug.  Happy birthday to my best girl!

My big 3 year old!Best Big SisterDaddy's ShadowYou're the best of me Iz...I love you!

Happy Father’s Day!

He walks into a house that has dirty dishes in the sink. The dogs are barking – begging to be let out.

He passes – yet another – pile of dirty laundry in the utility room and – yet another – pile of clean clothes in hampers, on sofas, on beds.

He trips over a Princess book on his way in – or a pair of shoes I left out – his pet peeve.  But doesn’t say a harsh word.

He sets down the pile of hospital bills that have appeared in the mail – again.

He doesn’t asks what’s for dinner….no matter what it is…even if there’s noxious, black smoke coming from the stove, he’ll always say, “Something smells good.”

He greets me hello and kisses me on the lips – like a habit that’s worth keeping – holding me tight for a fraction of a second – before his best helper comes barreling in yelling,”Daddy!  You’re home!”

He scoops up his little girl – if she’ll let him – and asks about her day.  He listens intently as she tells story, after story about who took who’s toy at daycare, who got put in time out, the “birthday cake” she made on the playground out of wood chips, how she did her ballerina dance, how she hopped in gymnastics, about the snakes on the walls, about the Princess and Frog…the overabundance of imagination and innocence spilling out of her mouth.

He walks over to his miracle – his hefty 16 lb baby boy – 4 months old and already starting to become a miniature version of Daddy himself.  He picks up his little “Chumbawumba” – as he affectionately calls him – tells him how big he’s gotten.  And on cue, the little butterball squeals and coos because Daddy is home…the big guy who holds him all the time, lets him watch sports with him, tells him about baseball, Euro soccer, gives him baths and tells him, “You’re gonna be just fine, little dude.  We just gotta get you fixed right up and you’ll be good to go.”

 

Craig wasn’t sure what kind of father he’d be when we talked about having children in the early years of our marriage. Growing up in a home with an brother 7 years older and no cousins – he wasn’t used to siblings, big families….much less….babies. I honestly was nervous for him.  I didn’t know how he’d handle fatherhood…I mean…he was used to sleeping 8-9 hours a night…what  shock it would be to have a newborn in the house invading his slumber.

I was worried about the transition he’d have to make – the selflessness that it takes to be a parent.  The sacrifice it requires.

My worries were all for not.

Craig was born to be a dad.  We often have conversations about what our “purpose” in life should be.  I know now – without a shadow of a doubt – it was meant to not just be a mother – but to be a mother to my special needs baby. It’s the most exhausting, most terrifying, most rewarding, most humbling job out there.

Like a lot people – he doesn’t feel like he’s found “it.”  The thing that makes him tick.  We are surrounded by friends who’s husbands make hundreds of thousands of dollars, go home to houses that are twice or three times the size our home, drive nicer cars, go on vacation – often – and stay in the nicest place.  I bet it’s hard on him…trying to keep up with the “Mr. Jones’s” of our little circle.

I listen to him and wish I could get him to see what I see.

A man who constantly puts his family first.  Who works hard to provide for us.  Who leaves at the crack of dawn to beat the commute just so he can be home early to spend time with his kids.

A man who has learned to laugh at the all the crazy that is me.

A man who’s seamless transition from bachelor, to husband, to father is one to be emulated.

A man who allows his heart to overflow and lets tears fall over his love for his children.

A man who’s heart found space for another “little” woman in his life.

A man who’s heart was wounded and broken when he found out the son he’d always wanted would be faced with challenges that would test the strongest of faiths.

A man who grew up not knowing God to a man who now strives to be a reflection of the Father himself.

To say I’m blessed to have him as a husband and a father to our children is an understatement.

We love you!

 

Why?

I woke up this morning and looked frantically on Facebook for an update about Baby Rowan.

She is a month older than Evan and I became quick “friends” with her mom on Facebook although she was thousands of miles away in Idaho.

Baby Rowan has hypoplastic left heart syndrome – basically – born without half of her heart.

She fought the good fight but is now playing with the Angels and getting kisses from Jesus.

I immediately looked over at Evan – snoozing and snoring in his Boppy – only an arms length from me.

It was midnight and he was sound asleep, but I had to pick him up, hold him close, tell him I loved him.

The Heartland is a place no one wants to be.

But, so many of us are stricken with congenital heart disease, so many, that we band together.

Moms and Dads – praying for each other, our babies, for surgeries, for recoveries.

We rejoice together when another baby makes it through surgery, does well in recovery, gains weight, sits up, smiles…you name it…we find a reason to celebrate.

But we also grieve together – the pain of the difficult journey we are all on – when suddenly – or not so suddenly – another young warrior passes from this fallen place to a place no longer filled with ouchies.

I know we all think it but are afraid to say it.

“Why did he/she not make it…but mine did?”

“Why is my child thriving…but hers/his is not?”

Breathe…..

“Is my child next?”

The painful reality of our lives and the desperate need to spread awareness about congenital heart defects runs rampant in our community.  We need our children’s struggles, their fight, the success, the sorrow – we need all of it – to mean something.

Seeing as Evan has only had one heart surgery and not his open heart surgery – I constantly pray that God will let me keep him.  I tell God, “I know Heaven is a much better place than here – but I promise I’ll do my best to make sure that he doesn’t know the difference – that he knows joy, he knows unconditional love, he knows compassion.”

I beg God.  Every. Single. Day.

I have a hard time asking God, “Why does this happen to babies?”

Because in the same breath, I still have to praise Him for my healthy girl, Isabelle.  I have to praise Him for getting Evan through his first heart surgery and letting Evan thrive.

I could ask…”Why my child?”

But I also have to ask, “Why my child?”

Why did we get picked to deal with the pain?

Yet.

Why did we get picked to also experience true, unrelenting joy?

Why does Evan have to suffer?

Yet…

Why does he still have a smile that radiates Your goodness?

Why does he have to have a heart surgery?

Yes…

Why was he so fortunate to have been born in this time, this now, where a heart surgery is even possible?

 

The pain is so great because our love for our children is so deep.  Without love there is no pain.

The greater we love….the greater the pain.

It’s the dichotomy of this journey that I am still learning to juggle.

The bad with the good.  Because the bad is so awful – no one should ever have to bury their child or even think about it.

But the good is so great – seeing a child grow and thrive after heart surgery – grow and thrive – not just survive.

I never, ever want to know how it feels to lose a child.

The fear…unfortunately….is always there.  The terrible thoughts….never go away..even on Evan’s best days.

 

Since I’ve had Evan – I ask lots of questions when it comes to faith.

I need faith to be concrete instead of abstract.  I need cause and an effect…one that I can touch, feel, hold.

I don’t see the air…yet I still breathe.

I don’t question breathing…I just do it…because so much around me says that it exists – the green grass, the light breeze, the people all around me breathing in and out.

I try with all my might to have that same sense in my faith.

Just pray and have faith…even if I can’t see it…because so much around me says that it exists – the fact that my Evan is still here today, the fact that in the darkest time we’ve experience I’m still able to stand, the fact that I still feel joy amongst all the sorrow that surrounds me.

 

I always thought when I would meet Jesus I’d ask Him, “Why my Evan?” with anger and pain….

But, as the days pass and I watch my boy grow, I watch him nestle into our family of four, I witness the pain in the Heartland as we lose another warrior but also see the impact a little, brave girl had on this world….and watch how the tiniest of bodies shines and becomes the Light for so many..

Instead, I now know that I’ll have to ask Him, “Why my Evan?”  in gratitude and humility.

 

To my heart family – to those who have gone far too soon – I pray for comfort and peace that transcends understanding.  Thank you for sharing our fighters for the world to see the Light.  I grieve with you for your loss…

 

Just breathe

Breathe in.

Breathe out.

Time – 20 minutes 53 seconds

Distance – 1.89 miles

I could hear myself breathing. One breath at a time.  In and out.  Steady. Rhythmic.

The Runkeeper app on my phone informed me how much I had run and how long I had run.

Close to 2 miles…

What was I running from?

Where was I running to?

This morning I woke up with my stomach in knots.  A normal occurrence on days we have cardiology visits for Evan.  And he’s been doing so well.  My little Michelin man – all rolls and all grin – has been thriving.  He has the occasional vomiting episode the doctor is concerned about but overall, he’s been pretty good.

I checked my phone – 4:59 AM.

Evan needed meds at 5AM and a feed at 5:30AM.

I decided to just stay up and do his 5:30 AM feed and let Craig sleep.

To pass time, I hopped on the internet to check on the daily happenings of my friends on Facebook.

I then saw that a fellow heart mom I had grown very close with was in dire need of prayers.  Her daughter had surgery last Friday and had been on life support.  The attempts to wean her from that support failed…and now the future of this little girl was slipping away.

I prayed.  Asked others to pray for Evan and for Ro.

I decided I needed to run.  Run away from it all.  Get my head clear.

I had a Body Back session last night. So trying to run less than 10 hours later is kind of ridiculous.

But something in me said, “Do it.”

So I did.

I opted for no music on my run.  I needed my mind to be clear.  I needed to hear my breathing.  I needed to pray.

I recalled something my Body Back instructor wrote in an email to me.  We’ve been discussing ways to tweak my diet and my work out regimen to I could truly optimize the 8 weeks and lose as much weight as I could.

I got stuck on something she wrote. After talking about calories and workout regimen she started another paragraph that started with: “So, here’s what it comes down to. Patience and self love.”

I remember reading it and it sticking on the forefront of my mind. I closed the computer and tried to ignore that statement.

As I remembered the statement, my feet quickened and my pace increased.

What was I running from?

Where was I running to?

I ran and I ran.  My head cloudy with thoughts of Evan.  Thoughts of Ro. And the nagging phrase Amber wrote to me:  “Patience and Self Love.”

I kept on running.  Focusing on my breathing.  Just trying to run as far as I could in hopes I could escape from some of the pain of my reality.

I started to feel my legs get sore.  A welcomed reminder that I my body was changing.  I focused on the uncomfortable sensation but kept on going.  I didn’t feel tired, yet.  I knew I had more in me.

I looked at the clock and it had been 48 minutes.  It was almost 7am and I needed to get home to get my family up and moving for the day.

So I stopped.  I knew home was about 10 minutes away – perfect for a cool down, walking pace.

Suddenly I didn’t have to focus on breathing.  Suddenly I didn’t feel the familiar ache of my muscles when I ran.

Suddenly I had to face everything.  And the tears started to fall….

And that’s when I ran – I ran right into the reality I was trying to avoid. {What was I running to?}

And that’s when I realized I was running from the fears that lurk in my mind everyday. {Where was I running from?}

“Patience and Self Love.”

Patience…

I realized that I’m so eager and so determined to work out and see results and forgo the patience is because I’m so afraid of having “home” taken from me.  I know how quickly our routine as a family can be disrupted in an instance.  Evan could go from good to bad…and then we’d be back in the hospital.

Time, I feel, is never on our side.  We’re dictated by the next medication, the next feed, the next doctor visit, the next therapy session.  There is so little time for much else that I am desperate to see results instantly – weight loss, strength, endurance – in lightening speed when really what my body needs is time.  It’s not about the physical change…it’s about the emotional changes I am desperate to reach – to a time of peace and certainty. Patience…

Self love….

I’m depleted.  I’m emotionally drained.  I give myself everyday to care for my Evan.  I give myself everyday to give my Iz stability in this time of instability.  I give myself every day to my husband to be his confidant, his escape from the stresses of work and life.  I’ve lost some of who I love in all of this.  I’ve lost some of the joy of who I am in everything we’ve been through.  I’ve neglected me for so long that I’m not quite sure who I’m trying to be.  Is the me of now enough?  Sometimes I don’t know.  Sometimes I wish I was so much more for those I love so I could “fix” everything that is wrong in our lives.  The concept of “self love” is so foreign.  I’ve lived so much of my existence as being something for someone – a good daughter, best friend, dutiful wife, doting mother.  I sometimes feel I fall short of all these things.  It’s also hard to be comfortable in my own skin when so much around me says to be something else – “younger…thinner…prettier….”  I’m lost in a world of comparing my best self to the best of the world…and not sure if it’s me that can’t keep up or if it’s the world that’s asking me to be an unrealistic version of me.

I took in all of these realizations on the way home.  I cried – from exhaustion, from realization.

I started to pray.  Just a simple, “Dear God…help.”

And that’s when I realized…

I just need to breathe.  In and out.  Focus on my breathing.  Focus on the pain we’re experiencing.  Pain means we’re changing…and working towards something better.  Patience is already here…isn’t that why Evan is so stable now?  Isn’t this time a time for reflection, preparation – God pulling me closer to him – asking me to finally surrender it all and preparing us for what’s ahead?

Self love – depleted – I’m depleted in it.  But isn’t now the time I need to turn to something – Someone greater – to fulfill that need?  I’m trying to be the best for everyone and forgetting the most important part of me…a child of a God who loves me so…who wants to love me despite of how I feel for me.  His love is enough.

My body is changing and I realized it’s not about the weight.  It’s my mind that is desperate for change…

So today…I’m still struggling.  Still unsure.  But there’s so much I cannot control but there’s one thing I can.

And that’s just to breathe.

 

 

 

 

Eight Years ago today….

“Beep.  Beep. Beep.”

I look up.  Rubbing my eyes. Trying to figure out what that sound was.

“Beep. Beep. Beep.”

Oh.  Evan’s feeding pump is alarming. He’s done.

Craig walks in the bedroom  and once I see him I close my eyes and try to get a few more minutes of sleep.

The sleep lasts about 10 minutes as I hear Craig rustling around our drawers to find socks for work.

I open my eyes, smile at him, and sleepily say, “I love you honey.  Have a great day.  Be safe.”

Something I’ve said every work day since we’ve been married.

He looks back at me.  Flashes me the same smile I fell in love with over 16 years ago and says back, “I love you, too.  Happy Anniversary.”

He pauses.  Smiles and lets out small laugh and says, “A little different than last year, huh?”

And he walks out the door to work.

I laughed at the thought.  Last year we were lounging on the sandy beaches of Mexico in our beach bungalow equipped with four poster bed, outdoor pool, outdoor bed (hey now…), outdoor shower (oh baby….) and a personal concierge.

I look over as the other man in my life suddenly lets out a sleepy yawn..then gags…getting ready to throw up.

I smile at the little butterball, comfy in his Mickey Mouse jammies.  Evan’s eyes open and his brow furrows…not quite sure if he’s ready to wake up.  He looks around and sees my face.

Then, he flashes his smiles I fell in love over 3 months ago – all gum, all cleft, too perfect.

I hear the bedroom door open.  There she is.  My sleepy girl.  In an outfit I’m pretty positive she picked out blindfolded – rock and roll jammies and a Dora shirt  – both too small – a bit too tight – when did she grow up?

She’s clutching her Daisy Duck – her best friend – her hair everywhere, her lips puffy from sleep, rubbing her sleepy eyes and says to me, “Momma  – I need to to tee tee.  And then I want a smoothen.”

I smile again as she climbs up the bed and greets her brother.  “Good morning, brudder.  Don’t throw up!”

What a difference year makes.

 

For better for worse.  For richer for poorer.  Through sickness and in health.

Vows Craig and I made to one another 8 years ago today.

Young.  Naive. Saying the vows because we loved each other.  And living on a prayer that our love would be enough.

Fast forward to today.

Our lives are so different than we would have ever imagined.

We knew we wanted a family.  We thought we’d have the 2.5 kids, white picket fence, dogs to match, living in an identikit house somewhere on in Texas – never leaving the greatest state in U. S. and A.

I think most people dream of those things if that’s what’s in their “life plan.”

We never in a million years would have thought that we’d be “those” people with a special needs child.

A child that suddenly changes everything.

A child that suddenly makes you live out your vows every.single.day as a married couple.

For better….or worse…

For richer….for poorer…(those dang medical bills…)

Through sickness…and in health…

I will never be able to erase the images from my memory of when we first found out about Evan’s diagnosis when I was 22 weeks pregnant, when we found out the severity of his heart defect, when I gave birth and him taken from me – as I watched Craig walk behind the medical transport team – crying, alone – without me by his side, when he finally held Evan for the first time in the Cardiac I. C. U. , when we found out Evan had to have surgery, when we thought the surgery failed, the walk from his ICU room to the cold, anesthetic hallways of the surgery floor…handing over our son to save his life.

I’ll never want to erase them.  As hard as our lives have been this year and I know without a shadow of a doubt will continue to be hard with Evan’s open heart surgery in the distant (still too near) future, I’ll never want to forget.

In those moments, the lowest of the low to this point, we’ve seen our marriage withstand it all.

We’ve still laughed together.

We still rejoice in the little things.

We pray together.

We hold onto – clinging desperately – to each other – to our vows – the choice we make every day to stand by each other. No matter what.

I can say without hesitation that I could not have made it through these last 4 months without Craig.  I often find myself dissolving into a puddle of tears over the fear and anxiety of Evan’s future.

I clearly remember my heart racing – hearing it pound and pulse in my ears – as the doctors said to us, “Evan is still very sick. The next day or so is very critical.”  And remember seeing the nurse escort the chaplain into our ICU room…someone you never want to see by your child’s bedside.

I don’t know what’s going to happen to Evan.  I wish I did.  I pray every day that God is going to give us a lifetime of memories – first words, first steps, first day of school – all those firsts you dream of for your child.

I pray those things everyday – knowing that God promised me that if I ask in faith with no doubting – He’ll give me the desires of my heart.  And there’s nothing more right now that I need to happen.  Memories with Evan…a lifetime of memories.

The one absolute in all those things I don’t know –  is Craig.  My marriage to him.  I know that he’ll be by my side – holding me up, lifting me up in prayer, dropping to our knees in prayer for our family, raising our hands up as we rejoice – these things – I do know.

Today, on our anniversary, our “family” birthday, I am humbled to be married to man I’ve loved over half my life, a man that found God, a man that leads our home, a man that has weekly ice cream dates with our best girl, a man that holds his sick son and prays over him.

A man that I still get nervous to walk out in front of when I’m all dolled up.  A man that when he smiles – I still get that delicious ache in my gut.  A man who’s kisses I still crave and need his arms to wrap around me.

A man that is the best Daddy to his little girl.  A man that is the best father to his best, boy. A man that is the husband I always prayed for but never thought God could bless me so great.

What a difference a year makes.  What a difference EIGHT years makes!

Happy Anniversary, Craig.

I love you.  Always.

 

The other shoe

I was putting up Evan’s newborn clothes yesterday.

My constant companion was sitting happily in his Nap Nanny playing with a his “Mr. Bear.”

I put up anything that wasn’t 6 months and up and put into a bag to donate – all the sweet little onesies that were never worn.

With our hospital stays dominating the first 3 months of his life, those tiny little onesies were barely worn if not at all.

I didn’t cry like I did when I did this with Isabelle’s clothes.

I didn’t cry because that’s just another stage of his baby hood we made it through.

Just making it through…

Not quite rejoicing.

Not quite breathing fully.

Always waiting…

for the other shoe to drop.

One my fellow heart mama wrote a beautiful blog about “Anticipatory Grief.”  Her son Bodie has a different defect than Evan’s…but our journeys…though so different…are hauntingly alike.

Some people say I need to pray more when I talk about the possibility of losing Evan.

What if I told you that I prayed everyday?  I pray everyday for healing. Everyday for a miracle so we can avoid another surgery but still have Evan here with us.  Here’s the thing about prayer – I know God knows the desires of my heart. (Psalm 20:4 ” May he give you the desire of your heart and make all your plans succeed.”)

I ask without doubting that He can heal Evan. (James 1:6 “But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea, driven and tossed by the wind”.)

I know that this is a time of trial for us. (James 1: 2-4 Consider it pure joy, my brothers and sisters,whenever you face trials of many kinds,  because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything.)

But, it’s also a harsh reality in knowing that my desires may not the same as God’s plans.

It’s a harsh reality knowing that God can absolutely heal Evan…but will He do it in this life or the next?

It’s a harsh reality knowing that this trial is one that’s supposed to refine me and bring me closer to God when really – it makes me angry at Him that He could do that to our family.

I get angry because the pain is so real and so raw.  It doesn’t get easier..the days.  They get harder.

Evan is starting to laugh.  Besides his ridiculously adorable smile, I get to hear true joy when his eyes light up and his mouth opens and a giggle escapes.

Now tell me…could you truly smile and relish in the moment when in the back of your mind that image, the sounds of laughter, the scent of good baby smells, the familiar warmth and perfect puzzle piece that fits in your arms….could suddenly be taken from you?

I try.  I try so hard to focus on today.  I pray when the fear starts to creep in – knowing it’s the Enemy that wants to take the joy of having Evan here today.

The faith in me knows Evan is going to be ok…no matter what “ok” means…

The mom in me waits everyday for the other shoe to drop.  For his oxygen to suddenly drop.  For his color to be bluer.  For those eyes I stare into every day as I sing songs and the eyes I watch slowly flutter shut into a deep slumber…to look sad, unwell.

Because the day will be here when our cardiologist will say to us, “It’s time to talk about his open heart surgery.”

As the days turn into weeks and those weeks into months, I cherish each memory I make with him – with us – our little family of four.  I praise God for the time we’ve had and beg God to give us more.

Like my fellow heart mom, I want you to know there is a purpose for writing this and its not just because I can’t afford a therapist.

It’s because I need you to understand – just a little bit – of the desperation I feel each day.  And why – I need so many prayers for Evan everyday.  And why – I need so many prayers for my Iz who loves her baby brudder more than words can say. And why –  I need so many prayers for my husband who loves his boy so much it brings tears to his eyes.  I need so many prayers because the fear is overwhelming, the joy is even greater and the anticipation is unsettling.

For those that don’t “get it,” that’s ok.  I’m ok with you never feeling or knowing anything I’m experiencing.  I pray that you never will.

The heartland is in the middle of a storm right now.  So many babies struggling to stay alive. So many babies waiting on surgeries.  So many mamas and daddies falling to their knees in the same desperation I feel every day – pleading with God to spare their child – have mercy on them – and allow their Angel on Earth to stay in this fallen place.

We vow to do whatever it takes – and we do – without hesitation, without question, with faith, with hope, with love.

Our lives can go from one extreme to another in a heartbeat.

Today, I am incredibly thankful for Evan’s health.  He is doing great despite all of his problems. But, I know that the next minute, next hour, next day could be so different.  Always waiting…anticipating the worst….praying and hopeful for the best.

Always waiting the other shoe to drop.

 

 

Happy Easter!

I was trying to explain to Isabelle what Easter was all about.

You know – besides Easter egg hunts, chocolate covered bunnies and a pretty new dress.

I told her that Jesus went to Heaven but loved us so much – that He came back to all the people – healed and whole.

Her sweet innocent face nodded and said, “Oh.” And then, she asked if she could watch Kai Lan.

It’s hard to truly grasp the gravity of what Jesus did for us.

Imagine taking all the suffering, all the pain, all the hurt, all the wrong of someone around you…and instead of saying, “Well – they deserve it” – taking the blame and suffering the consequences.  You’re the one that is punished, made an example – and you take on the responsibility without any hesitation – all because you love that someone – or many someones – so much.

Jesus did that for me.  He did that for you.

“Forgive them Father, for they know not what they do” Luke 23:34

I came to terms with the hugeness of that act just recently.

One thing I’m relating to even more now – is Mary.

Jesus mother.

 Now there stood by the cross of Jesus his mother.” John 19:25

A fellow heart Mama blogged about this and I was in tears as I read her blog.

Mary followed Jesus as He bore the Cross.  She walked with Him and never left his side.  Even the men who vowed to always be there for Jesus – his disciples – left him.  But, not Mary.  She stood at the foot of the cross as she watched her son in pain, cry out, suffer.

As a mom of a special needs child – a child who has already battled through so much in his 2 months on this Earth – watching our child suffer and possibly lose my child –  is part my Cross to bear.

I’ve cried as I watched Evan in pain.

I’ve begged God to allow me to take his place.

I’ve wiped blood from his body, wiped his tears.

I’ve told him at every chance how proud I am of him for going through all of this.

I’ve told him I don’t understand why this is happening – but I know that there is something bigger than this moment – and that someday we’ll know. And no matter what, I’ll never leave him.

Mary never left her Jesus.

And Jesus never left us.

Thank you for never leaving us.

 

I took a walk

I needed a break to clear my mind of the junk that was flooding it.

I didn’t want to leave the hospital so I decided to walk the floors and the lobby area just to clear my head.

Sometimes you don’t realize why you’re driven to do something, until you’re actually in the motions of doing that certain something.

As I walked the lobby and walked the floor, I saw children of all ages – babies, toddlers, teens.

I saw tired Mamas like me.  Worried Daddy’s like Craig.  Siblings caught in the crossfire of home and hospital for their brother or sister.

I saw babies in strollers with no hair…clearly from cancer treatments.

I saw adults playing with baby toys – they were still children in their mind – a mental disability in front of me.

I saw a pretty teenage girl laugh from her wheelchair.

I saw tears on faces.  I heard cries of pain.

And I realized – I wasn’t alone.

I realized that we have been in patient for over 30 days and I haven’t prayed for another soul in this hospital.

I needed to take that walk – God needed me to take that walk – for me to see the suffering of others so I could pray for them.

Of course I’ll continue to ask for prayers for Evan.  But, now, I see that I don’t just need to pray for him, but to pray for others.

Others are suffering and I have been so fixated on Evan and the suffering I’m going through, I’ve failed to do what I am supposed to do – and that’s pray for others.

I’m convinced that there are thousands praying for my boy.  Maybe it’s just wishful thinking – but I’ve asked so many people to share his story and to pray for him – that I feel good that the Heaven’s know Evan’s name.

So today and here on out, my prayers will start others.

It will start for the little girl Iz’s age, too weak to walk, with an I.V. line I saw running from her tiny body.

It will start for the mother whom I saw walk quickly past me with tears streaming down her face.

It will start with the baby I saw being brought in by the transport team.

It will start with my fellow Heart Mama’s who just got the scary diagnosis that their child’s heart isn’t quite perfect.

It will start with my fellow Heart Mama’s who’s babies have been in the hospital since birth and they are Evan’s age.  For their children having such hard recovery after their surgery.  For their little ones having a hard time at home.  For the future doctor visits and procedures we all hold are breath for – ECHOs, heart caths, MRIs…

…for Jaxx, for Brynna, for Zeke, for Ro, for Xavier, for Lucas, for Bella, for Claire, for Roman…for so many more who’s hearts are mending.

I took a walk to clear my head…and God filled it with something better.

 

 

 

Perspective

Maybe it’s because so many are praying for me and Evan – but the past couple of days have been good to my soul. Not so many tears as before…

Evan is progressing slowly.

And although we’ve been here for 30 days..he’s progressing in the right direction.

I’d rather him climb slowly uphill…then have him tumble, quickly downhill.

He makes me laugh and smile everyday – and I’m the one that is supposed to making him feel better.

I look back at pictures of Isabelle’s first few months and realize I’m getting the same memories with my Evan – first smiles, first baths, singing songs, late night talks, and one on one dances.  My memories just happen to be in a hospital instead of at home.

His little heart still isn’t fully repaired and we still have months until his open heart surgery.  But, he’s still here, and that’s what matters most.

His sweet face still isn’t repaired as well and probably won’t be until after his heart is mended.  But, he can smile so bright and so big that it melts the hearts of everyone who sees him.

His perfect little body is marred with scars from surgeries, bruised from I.V. lines, and dotted with scabs from needle sticks and pokes.  But, his scars are just a small reflection of His scars.

And yet again I’m reminded…what a great and wonderful gift from God he is.

Perspective.

 

In the storm

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.