Getting Away from it All

The horizon was a tapestry of blues, yellows, orange – that sacred moment where the sunrise meets the water.

The air was a delicious mixture of salt and sand.  I couldn’t believe how beautiful the morning was as I looked from our balcony towards the crashing waves of the beach of the Gulf of Mexico.

The day was still waking up.  The seagulls were flying high in the sky – almost  kissing the clouds as they greeted the day.

I wanted to hug the day in appreciation for the feeling of excitement I had in my heart – a day filled with sun, sandcastles, water, relaxation.

But, my arms were full and so was my heart.  I looked down at my best guy and could feel his heart beating against my chest.  I could feel the lub dub lub dub that haunts our lives daily – the abnormal heartbeat that is now our new normal.

His eyes were wide – taking in his new surroundings.  Drinking in the sights that him and I have been greeting everyday on our family vacation to the beach.

Our eyes locked and he gives me a huge, cleft filled smile.  I hug him a little tighter – saying a little prayer that he’s making the same memories I’m making.

I cherish this time at the dawn – just him and I – before my best girl and my love awake for the day.

Just him and I – the salt, the sea, the sand – dancing our little dance with the melodies of the waves crashing and my humming of “Twinkle, Twinkle, Little Star” as music.

Overcome by feelings of joy for the past few days, I could feel tears well up in my eyes.

The overflow of joy spilling out of my heart – knowing that for the past 5 months our hearts have experienced so much sadness, so much fear.

But, now, in this moment, our hearts knew more joy than fear.   Looking back at the last few days on our vacation – a time to get away from it all – our hard hearts had somehow transformed – had been renewed – knowing joy and happiness once again.  Our days – even if it was just for this short time – were once again filled with laughter and hope.

I hugged my Evan again.  A squeal escaping his beautiful mouth and his arms and legs flapping in excitement.

The tears spilled over as made a conscious effort to ingrain this moment in my memories.

I kissed his head – salty from the mixture of the ocean breeze and the beads of sweat collecting on his forehead (a sad reminder that his heart is working overtime) – and whispered to my boy, “No matter what happens – we’ll always have this moment.”


Three weeks earlier…..

“Dr. R – we really want to go on a small family vacation this summer.  We’re hoping to give our daughter a fun summer trip – especially since she has been through a lot these past few months, too.”

His brow furrowed.  He took another good look at Evan, reviewed his chart once more, and looked up at the ceiling…

“He’s been pretty stable the past couple of visits.  Let’s see how he does on his visit the last week of June.  When did you plan on going?”

I looked at Craig.  He shrugged his shoulders – of course – deferring to me – the party planner and social director of our lives.

“Umm – I think around the 4th of July?  For the holiday weekend.”

He smiled and said, “Ok that will work.  We’ll see how he does on that visit and then you can make plans.”

I returned his smile but felt an overwhelming urge to yell, “Are you serious?  Planning a family vacation – booking a place, getting meds ready, packing for 2 kids – one with special needs, getting the house settled before we leave…in less than 10 days???”

“Sounds like a plan.” I replied.  Telling my inner OCD mental case to calm down and stop wringing her hands.


Planning vacations is an art.  There has to be a perfect balance of timing, finding the best location, finding the best time, checking weather, checking activities.  I typically plan these things months in advance – knowing that I’d need to price shop and compare to get the best deals.

But, that’s just not a luxury we get anymore with our heart baby being at the stage we’re in.  It’s a fine balance – trying to live our lives as normal as possible with a baby that hasn’t been repaired – but trying to live our lives carefully with a baby that is stable but could suddenly make a trend downhill.

I knew how blessed we were.  I knew that Evan being stable was a blessing. I also knew that I couldn’t take for granted a second of him being “normal” before his open heart surgery.

We needed a family vacation – even a small one – a time where the four of us could make memories that were filled with laughter, uncontrollable giggles, staying up late, waking up early to chase the day.

Craig and I went back and forth on going somewhere.  Question after question of could Evan handle the trip, could he handle the heat if we chose to go to the beach, would we be able to swing a trip so last minute without breaking the bank, could Craig take time off from work – knowing he has been saving all those days of PTO for Evan’s surgeries?

Could we do it?

The answer always came back to Evan.  Him showing us that every day is a gift.  Him reminding us that no matter how difficult and trying the times have and will be – that we need to find joy and happiness in our today.  Him reminding us that we aren’t going through all of this – the doctor’s visits, the surgeries, the future surgeries, the medications, the sleepless nights – all of it – to live our lives in a bubble.  He reminds us every day – in his smile, in his love for life – that his heart condition is a part of our lives – but we can’t let it rule our lives.

On June 20th – we got the ok to go on a trip.  We were told we had to make sure that wherever we went, we’d need to find somewhere that had a children’s hospital close by, that we had all of our medications all of his feeds – everything.

We decided that a beach trip was in our future.  Our best girl loves being in the sun and often talked about the ocean…you know…as she watches the water drain from the bathtub and knowingly says, “Da water is going to da ocean.”

I searched and searched for days trying to find last minute deals to rent a beach house.  We wanted the comforts of home – needed a home type atmosphere – since I’d probably be spending it indoors with Evan if the heat was too much for him to handle.

Finally – a week before July 4th – I found a beach condo to rent.  It was within our price range, was within a resort style setting with couple of pools on site, and right on the beach.

I researched travel insurance – knowing that something could happen to Evan and we may have to cancel last minute. Unfortunately, there was that fine print that said no refunds would be honored if an illness occurred as part of a “pre-existing” condition.


So, we lived on a prayer.  Hoping that our boy could stay well and stable so we could go on our trip.

The excitement started to build as the days approached.  Craig was having a rough couple of months at work and needed the vacation badly.

I just wanted to remove myself from my “life.”  Even though any vacation is just a business trip for moms – we take our work with us – our littles not aware that vacation mode means no tantrums, no crying, no whining.

But, something about being on a beach – or at least by the beach – makes the wiping of the noses and bums, the spitting up, the battle of the “Because I said so – that’s WHY!” – just a little more bearable.

I got all of Evan’s medications refilled, packed up extra syringes, extra feeding tubes, extra feeding supplies, extra batteries for his oxygen monitor, his scale to weigh him daily, his binder full of his medical history and current medical state – pretty much his little nook in our house devoted to all things Evan.

He was doing well and we were getting excited.  I packed up our car the night before with the exception of coolers and food.

It was really happening!  Our boy was doing great and we were going away – far away from  it all.

Easy there killer…

My bubble of excitement quickly burst the morning we were set to leave.

Our best girl – the one who has been the picture of health for months – woke up with a cough that sounded like she had smoked a carton of Marlboro reds and a nose that was running  and dripping worse than Niagra falls.

I didn’t know what to do.  If she wasn’t going to be in close quarters next to Evan for 5 hours straight – we’d go.  But, our fear of getting Evan sick never leaves us and we take so many precautions when it comes to him.

So…even canceling a trip to keep him well would have to happen.

Craig and I were so disappointed.

We knew that our little family needed this trip.

Craig headed out for a few hours to clear his head.

I packed up the kids and went to visit Dr. Grandma.

She listened to Iz, took a look at her ears and proclaimed what we assumed – it’s probably just a virus.


We headed home and I was prepared to call the condo owners to let them know we weren’t going to make it.

I couldn’t bring myself to do it.  The car was packed.

So, I did what any good mother would do.  I gave Iz an s* ton of cold and cough medications, made Evan sit underneath a canopy fashioned with a thick blanket over his car seat, packed handsanitizer and wipes, got on my knees and prayed to God and to the vacations gods of sun and sand, and had the phone number and Google maps directions to the closest children’s hospital handy – you know – for both of my sickly littles.

Craig walked in from his morning and looked at me. I’m not sure he recognized the madwoman before him that just kept repeating, “We need to go. We just need to go.  We need to go.  Let’s go.”

For someone that has been uber cautious since day one of Evan being born, this was very unusual of me.  Call it the Heart Mom Breakdown or what not – but I had passed the point of reason – rationalizing that Evan and Iz had been around each other for the past few days when Iz started to feel poor and that if she could stick a toy in her mouth and hand it to her baby brudder who would obligingly put the toy in his mouth happily…well…he’d be just fine.

My gamble paid off.  The guilt I felt as we were sitting in the car for 6 hours as my girl coughed up a lung and my boy whined and fussed were greater than the guilt I feel after I read “Fifty Shades of Grey” on my way to church.

But…all was well when we saw the ocean.

Maybe it was the hefty cold and cough meds I pumped into her poor little body.

Maybe it was the countless prayers I said over her and my boy as I laid my hands on both of them for God to heal them so we could have some healing over our souls with the help of the sunshine and water…

But, everything was great.

Even with the tantrums and whining.

Even with Evan’s feeding pump not working for a few hours…

Even with me trying to figure out a way to feed my boy who hadn’t taken anything my mouth for 5 months…

Everything was what we needed.

Craig and  I took turns staying indoors with Evan since the heat was just a bit too much for him.  Which meant, our best girl got undivided attention from each of us.  God blessed me with a phone that didn’t work and a slow internet connection – I was unplugged for 4 days and plugged into my family, instead.


We had ice cream for lunch AND dinner, the adults had cold beers on the patio as we looked out at the sunset with the salty breeze as the littles were allowed to watch as much T.V. as they wanted in the afternoon and early evening, my running shoes didn’t see the light of day as I opted for flip flops and sandy toes and sleeping in with a nap here and there, we had dinners that were filled with giggles, we had days filled with searching for sea shells and building sand castles, we had snack time where I showed my girl how an Oreo and a homemade s’more cures the saddest of hearts, we munched on chips and dip while we talked about our day full of adventures, we cuddled on the couch at night as we popped in a DVD and belly laughed over the Muppets, we read book after book at bedtime….not having to rush since our days and nights were just a continuation of the euphoria we were experiencing.

Craig and I both had moments where we found ourselves in tears.

Him and I both praying for many more times like these for our family of four.  Crying tears of hope for our boy.  Both of us speaking and professing to God that we’d be back to this place – all four of us – next year and every year after that for many years to come.

Crying tears of joy for our girl – who is growing up so fast – who is experiencing some of life’s toughest lessons of pain and sadness as our family deals with the reality of our lives with her brudder that is so very sick.

Those tears aside – our trip was everything our family needed.  It was a time of renewal.  A time of healing.  A time to make memories – that no matter what our future holds – we’ll have memories of laughter, of the ocean, the sand in our toes – with our best girl and our best boy right alongside her.