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.

 

 

Comments

  1. You write so well!

    I completely understand all that you’re saying, too. There are many moments (and it was worse in the weeks leading up to Mason’s surgeries) where the cute things he would do would bring me extreme pain. His second heart surgery was just after he turned 1. He had developed so much of a personality and so much charm. Each delightful thing he would do would make me wonder if that would be something I would be grieving to see again.

    He did fine and continues to do fine. However, like you, there’s always that “anticipatory grief” in the back of your head.

    It is so hard. There’s no easy way to go about it, but you are doing a remarkable job at expressing yourself.

    Hugs and Prayers <3

  2. Beautiful. So clearly expressed. It touches my heart and is a kind of balm to know that others share the same fear, although I hate that anyone else has to live woth it.