“There”

“What if Evan were to have a heart attack in two days?  What then?”

I looked at my cardiologist – open-mouthed – unable to really grasp what he was asking me.

“Well – I’d make sure we lived those two days to the fullest and then if it happened…I’d take him here and make sure you and everyone else did everything you could to make sure he was ok.”

“Ok – then that’s what you do.  Because, we do not know what tomorrow brings…for any of us.  It is a process.  It is a process of healing and letting go of the guilt you feel.  I know how hard it is…remember my daughter had open heart surgery at 6 months of life.  I would go into her doctor’s office waiting with every question, too. But, now, you need to live your life as normal as possible.”

I looked at Dr. R.  Tears were falling.  I argued that our lives are far from normal – we have medications to give, a feeding tube, therapy weekly, doctor visits – whether it’s cardiology, craniofacial specialist, or regular pediatrician visits, pre-caution after pre-caution as we head into the cold and flu season – so living “normally” is a stretch.

He gently reminded me that it will take time.  But, eventually, we will find our normal.  He went over Evan’s heart – his single ventricle heart.  The heart that has no cure.  A heart that will need tweaking again in a few years.  A heart that may give him a full life, may lead him to a transplant, may go into failure.

Like always, Evan will dictate what he needs.  His heart will show us what it needs…when it needs it.

It may be years down the line…months…weeks…days…

I hold my “glass” baby – so easily breakable – so fragile – with arms that are fearful to let go – fearful that if I give up and inch – he’ll shatter.

I try to remember that I’ve built up a pretty cushioned foundation beneath my feet – a top notch medical team, an army of prayer warriors, friends and family who are poised beneath me with safety nets – to catch me or my boy if one of us stumbles.

I’m learning slowly to “live” our lives.

It took a lot in me to go on our walks.

But, seeing Evan’s face when we ventured outside made me realize his life isn’t within the confines of the four walls I shelter him in…his life is out “there.”

The “there” that holds promise of normal.  The “there” that doesn’t promise me a life without sickness, without struggles, without battles.  The “there”  that does promise smiles, laughter, learning, exploring.

I’ve talked big – saying that I want to give Evan normal because he’s fought so hard.  I’ve talked big – saying that I’ll put my trust and faith in God to protect him.

Now it’s time I walk the talk.

I can’t do much about the seasons of illness – cold and flu – that is inevitable in our parts.  Evan will have to stay in doors for the most part.

I can start researching fun things to do in the spring and summer instead of researching mortality rates, complications…

I can start believing that God’s going to give my boy many years with us instead of agonize if He’s going to take Evan from me sooner rather than later.

It is such a process.  I’ve trained myself to expect let down.

But, despite what some may think, God has exceeded our every expectation for my boy.

Yes…he was born with the an incredibly unique and rare syndrome with a very sick heart….

Yes…he requires more surgeries to repair his heart and his cleft…

But, look at him now.

Look at the him…the living promise of healing and faith…in a onesie with a frog on it, covered in drool, with baby food in his hair, as he chews on his toes and pulls on his doggy’s fur…

I realize…God has given me normal.  I’m getting to do the laundry, make the dinners, clean up the clutter, wipe the faces, make the bottles, kiss the boo boos, cuddle the chumba-wumba….

All the normal I’ve been trying to find…is right here…wrapped in this perfect package of the life I get to have with my imperfectly perfect family.

I’ve been so busy agonizing about “trying” to be normal…I’ve failed to see the beautiful life that is my normal.

I’m still working on me…it’s a process to let go and let God.  It’s a process to allow myself to protect him without smothering him.

I’ll get “there.”

My boy is “there” – as I watch him learn to eat, laugh at ducks, squeal when he watches his doggies run around the yard.

My best girl is “there” – as I watch her run over to her brudder and steal toys from him, ask “when are we going to Disney…as our family?” since I so stupidly mentioned it to her once…

My best friend is “there” – as he tells me about the awesome trip he can’t wait to take Evan and Iz on in the summer, as he makes his chumba-wumba laugh and squeal…

I’ll get “there.”

I will.