Reality

I got the call about the surgical route for Evan and immediately couldn’t breathe.

How could this be happening?

I thought that he’d be “fixed” after this surgery?

I never thought I would be forced into this world that I dabbled in in the Heartland.

The “single ventricle” world.

I left the waiting room and sobbed down the halls of the hospital.

I found a bathroom and cried in the stall and then cried over the sink.

I went back to the private waiting room we both mine and Craig’s families were waiting with us.

I sat down, didn’t say a word, and just sat.  Waiting for the next call from the operating room.

Craig left the room too.  I’m not sure where he went but he came back in.

In the middle of the room, surrounded by our families, he pulled me to him and held me and let me cry.

I couldn’t breathe.

I couldn’t stand.

He was holding me up when the ground beneath me suddenly felt like it was gone.

“It wasn’t meant to be.  It will be ok.  He’ll still have a full life. We’ll make sure of that.”

He just kept saying over and over to me.

I couldn’t breathe.  I couldn’t stand.

Between each muffled sob I just repeatedly said, “Please. Please.  I just want him out of surgery.  I just need his heart to beat.  I just need his heart to beat again.”

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I can’t believe it’s only been 10 days since that moment.  The moment the surgical team described to Craig and I as the “biggest family crisis to date” we’ll see as a family.
It’s incredibly surreal.  Looking at my boy this morning at 5AM, struggling to get back to sleep after this morning feed has started.  I’m armed with his bulb syringe and a towel – ready for him to throw up.

He’s surrounded by his puppy, his lion, his Scout, his monkey.  His room a mess with clothes that have been newly washed mixed with the pile of clothes that are soiled from the day before.  I’m not sure which pile is clean…they’ll probably all get thrown back into the wash just to be safe.

But, he’s here.  In his room..at home.  Just 10 days after a surgeon stopped his heart and made him a new one.  Just 10 days from the moment I held my breath for..the call all of us Heart Mamas long to hear, “Your baby is off bypass and is stable.  And his/her heart is beating on its own.”

My new reality that we’re faced with is one I face with excitement and trepidation.

With Evan’s “new” heart – his single ventricle heart – and his rare diagnosis – the statistics of survival are alarmingly low.  Scary low.  He’s prone to more infection.  He’s still due for another open heart surgery in the next 2-3 years.  There’s a chance his “feeding” issues are unrelated to his heart and his diagnosis.  But, there’s also a chance it is.

We still face many, many cleft lip and palate surgeries.  The risk for him going under anesthesia is greater than a normal child since his circulation isn’t normal…it’s stable…just not normal.

All of his issues suddenly become compounded and exponential instead of singular.

I think about these things all the time.  Since his surgery last week – it’s all I can think about.

I was taken to breaking point as a parent.  I wasn’t pushed over…but I was taken there.  And in all honesty….despite the shock that Evan’s heart could not be repaired…his surgery and recovery have been text book.

My experience pales in comparison to other Heart families that are pushed over the edge…and are sitting at the bottom of the cliff still waiting to come up.

And here I sit.  Looking at  my boy who throws up at least 4 times a day.  Who still needs a feeding tube for all of his nutrition.  Who still takes 5 medications – 1 of which is a medication used for patients in “heart failure.”  Who will need physical, occupational and feeding therapy aggressively in the next few months…maybe year of his life to get him back to where he was pre-surgery.

But, here I sit.  Looking at my boy.  And I can’t believe how incredibly blessed I am.

He’s touched the lives of so many.  Strangers from all parts of the globe.  I’ve been told how his story has made others better parents.  I’ve been told how his story has made others “give praying a shot.”  I’ve been told how his story makes people cherish their life and hold those dear to them a little tighter and a little longer.

I’m armed to face our new life – the “normal” the doctors want us to have – with caution. We’re still told to stay away from sickies, be cautious around those who do not vaccinate, keep low profile (read: lock down) during the cold and flu season…as my Evan will have a tough time getting over illnesses unlike a heart healthy child.

I realize from that moment – 10 days ago – that life can be taken from any of us at any moment.  While I’m excited to celebrate Evan’s 1st birthday – even though statistics say we may not – I still hold onto hope – the same hope that got me through the 8 hours of open heart surgery.

I don’t know how long my boy will be with us – 5, 10, 50, 100 years?  I only pray to outlive him.  Then again…I pray that same prayer for my best girl, too.  This isn’t meant to be a downer…it’s purpose is to remind others to cherish every moment.  Remember that every second is precious – the hugs, the kisses, the tantrums, the messes – all of it.

When you’ve been taken to the edge and you are looking down the ravine, breathless, heart pounding – so much clarity arises.

The reality of life sets in.  How fragile it is.  How each moment is truly a gift.

I suddenly don’t care as much about which school my kids will go to – I just can’t wait until the day my Evan gets to hold that sign that says, “First day of Pre-school:  I want to grow up to be a ___________.”

Because that means he made it.

I suddenly don’t care as much when I look in our bank account and see less dollars in our portfolio – I just can’t wait to spend that money on trips with my family to ball parks around the nation, first soccer games in Europe, mission trips for Operation Smile.

>Because that means he made it.

I suddenly don’t care as much that our house is smaller than most, our cars not as nice, our clothes not as designer – I’m just so thankful I have a home that’s too small for my family of FOUR, a car that’s dinged up from the abuse of Goldfish and fruit snacks, and clothes that are thrown up, spit up on, cried on with sleeves that wipe runny noses and pant legs that double as paper towels.

Because that means we made it.

We are facing our new normal with caution and excitement.  I’ll count down the days of Evan’s recovery – 10/11/2012 is his 6 week post-op end date.

I’ll stock up on hand sanitizer, anti-bacterial wipes….prepare my speech of “has anyone been sick recently” as I pack up our bags for play dates and outings….

I’ll do all these things to get my boy ready for the life I promised him.  The normal he deserves.  The life he fought – is fighting – for.  For the life I whispered in his ears as I soothed back his hair and sang to him as he sat paralyzed post surgery..

I’ll hold onto every memory, every moment of heartache, every tear, every stomach dropping, pulse pounding memory of that day 10 days ago…I’ll never want to forget a second of it.

Because as I look at my boy now….I remember that time….as I plan for our normal…and remind myself daily…in this moment…on this day…

That he made it.

Comments

  1. Czarina/Scott?..We have never met, but Shauna/Kip are my dear friends…your amazing love and courage are so inspiring..my prayers are with your sweet family during this difficult period in your lives…cherish every moment and laugh as much as possible!

  2. Sorry…meant to write Craig!