‘We decorated your hospital room instead of your nursery. What To Expect When You’re Expecting missed the chapter about you.’: Mom shares touching tribute to Congenital Heart Disease warrior

“We decorated your hospital room instead of your nursery. Newborn photos were replaced by pre-heart-surgery snapshots.

‘What To Expect When You’re Expecting’ seemed to miss the chapter about you.

Your first haircut was a side shave, needed to place an IV. We never had the chance to appoint breast or bottle for you. TPN was your liquid gold.

The sleepless nights were due to phantom cries and beeping monitors… and the gut feeling we would miss the call that said ‘get here fast.’

We couldn’t celebrate your ability to roll over, or argue over who heard your first word. I remember the small pamphlet explaining you would most likely never walk, or never speak. I tried to forget the part that highlighted you should have never lived.

It was never our decisions or your accomplishments that made us fit to be your parents.

We never got to teach you right and wrong… never instructed you to read or ride a bike.

The complex task of raising you to be an upstanding member of society was replaced by the realization that this world may never accept you as equal.

But every day of your short life, you taught us how to love.

When we removed the shell of expectations of parenthood, we were blessed to simply know you.

When we listened to the piercing silence between the beeps, we could hear your heart, your breathing, your level of peace in a place anything but peaceful. Prior priorities were replaced by mundane miracles.

When we stopped looking for perfection, we saw beauty in unbearable positions. Beauty in broken, beauty in holding space.

And when you took your last breath, you didn’t take away the remarkable imprint of life you constructed in our hearts.

For everything you lacked, you exemplified God’s grace.

For every flaw you inherited, you symbolized God’s unique design.

For every moment of failure, you embodied faithful endurance.

For every limitation, you represented our need for a savior.

For every loss, you pointed to the hope of Heaven.

Now I know there was a missing chapter, because being your parents was greater than anything we could have ever expected.”

This story was submitted to Love What Matters by Sydney Hatcher of Carmen’s Miracle Makers. You can follow her journey on Instagram here and here and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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