Just say “no”

We had a jam packed week and weekend….and a jam packed month ahead.

We had family in from Canada, a play date that Iz has been so excited to go, my sister’s 40th birthday…we have birthday parties for little friends, open houses at Iz’s school, baseball games, trips, girls’ night..

And with the bumper to bumper schedule, my husband and I find ourselves missing one another.

I find myself missing Iz.

I find myself missing Evan.

Craig misses us…


Because a lot of these things, we do separately.

Me and Iz.  Iz and Craig.

Rarely – the fantastic four – my whole family getting to be a family.

And as a busy as the schedule seems…we decline many invites.

We just say “no” to so much.

We decline with resentment…hating that we can’t be normal.

We say no with apprehension …not quite sure if the person inviting us “gets” why we can’t come.

We miss out on parties, get togethers, the fun that summer brings.

It’s difficult to grasp the enormity of our “no.”

The true essence of why so many Heart Mama’s and Heart Families choose to barricade themselves in the comforts of their home…often feeling suffocated in the same space of the place we choose to be…is sometimes hard to “get.”

With a medically fragile child, especially one with a heart defect, we try to sanitize our way through each day.  We wash hands ’til they are raw and red.  We sanitize counter tops and door knobs.  We do laundry and choose the hottest water possible….to kill off any germs.

Our obsession of the “yuckies” – as we call them in our house – trying to banish the “yucks” as soon as my grimy little walks into the door – making her change clothes, wash hands, take off her shoes…making the husband store his gym clothes in plastic bags and put them directly in the wash (Lord knows what is growing on those things…)….bringing my mini bottle of hand sanitizer to the gym and using it after each touch of the barbell, the floor, the medicine ball…

This obsession of the yuckies….all to make sure we keep Evan alive.

My sole job as his mama – until his repair – until he builds up his strength – is to make sure he survives.

That’s it.

It’s a catch 22, friends.  And we Heart Mama’s know this.

Keeping our little warrior away from as many germs as possible…but praying they build immunity.

So…we ask the same questions – “Do you vaccinate?”

“Do you smoke?”

“Are you sick? Well…do you feel like you could be coming down with something?”

Sigh…sounding like a broken record isn’t fun for us either.

But, our lives don’t start and end with Evan.

We still have to get out…for our sanity and for our best girl.

She needs to have birthday party fun, pool time, normal.

But our outings have to be strategically planned…who’s staying with which kid, for how long, who’s going to be where….etc.

Craig and I – we divide and conquer.

Each of us taking our best girl out on dates.

Iz loves it.  She gets our undivided attention…and then she has her moments where she’ll say, “No…Evan can come too!  We go together.  As a family.”

And my heart shatters.

Or we’ll be hanging out at the house – turning up the music, me dancing so freakin’ awesome, Craig “dancing” aka bending his knees and clapping, Iz twirling to the music, as Evan kicks his little legs, flaps his arms, and squeals – then my best girl looks at me and Craig and yells, “We’re all together AGAIN!”

Again, the heart breaks.

We make the choices we make…miss out on a lot…miss one another…to make sure we give normal to our girl….

Craig and I often foregoing time with each other to make sure Evan is under the watchful eye of one us.

Our date nights happening after prayers and tucking in stuffed animals…and catching up on TiVo and snuggling on the couch…stealing kisses between story time and coloring….

Our choice to say “no” to the life around us in hopes that we’re saying, “YES!” to the life that awaits us…

A family of four….all together once again.




  1. You are such a beautiful writer, Czarina. Just wanted to say that. xoxo