A Medically Fragile Child’s Perfect Ending

by jphilo | Nov 15, 2012 | Different Dream, Encouragement, Spiritual Support

A Medically Fragile Child’s Perfect Ending

I’d like to introduce you to Stephanie Ballard, a new Different Dream guest blogger. You may recall meeting her in September, when she shared the poem she wrote for her son’s teacher. Reader response to that post led to an invitation to guest blog on a regular basis. Today, she describes how she longs to write the perfect ending to her medically fragile son’s story.

How I’d Like to Write Your Story

I can hear the gentle patter of his footsteps scurrying across the carpet as he dashes into my bedroom in the early morning hours. “Good morning mama,” he whispers while climbing into the bed beside me.

“I’m awake,” I answer sleepily, as he wraps his tiny fingers into my hair. “Guess who loves you?” he asks.

I find myself smiling from under the covers. This has become our ritual-a game that belongs only to us. I relish these morning moments…as I am able to connect with my son without all of the interruptions and worries that I know we will face as the day wears on.

No one could have prepared me for life with a medically fragile child. It is a day by day learning lesson full of challenges and triumphs, but my son is my greatest teacher. “Hmm”…I say in response to his question. “Does Braeden love me?”

He giggles in response, and nods his head up and down emphatically.

“Guess who I love?” I ask in response, as I tumble out from under my warm comforter.

He silently taps his finger under his chin, as if in thought mode and then says, “Coffee?” I laugh out loud, knowing that life is full of uncertainties…but I am thankful for this moment in time.

Your Story

If I could write your story son…
(Oh how I wish I could)
I’d pen for you a journey
That held nothing but good.

Wouldn’t it be perfect
If that job belonged to me?
I think I’d change a thing or two
While writing your story.

I’d write of lasting happiness
The storms would stay at bay
I’d write your story carefully
I’d have so much to say.

You’d know not of a hospital
or days in ICU
You’d only know of simple things
Like other children do.

The sun would rise…Yes everyday
and shine to make you smile
You’d never know a day of pain
You’d never face a trial.

You’d dance to music all your own
While watching Sesame Street
I’d tuck you into bed each night
and life would be complete.

I’d write of picnics in the park
and winters in the snow
I’d write of laughter, joy and love
I’d sit and watch you grow.

I’d proofread till my eyes grew tired
Each line and paragraph
and let my pen fall to the floor
Then stop to hear you laugh.

And never would I question
What sick children must face
Never would I have a need
To ask God for his grace.

If I could write your journey son
Perhaps I’d not convey
The message that HE longs to share
“We must live for today.”

Your story has been written
Each stroke penned with great care
He knows each thought I have of you
He’s numbered every hair.

No, I can’t write your story
Although I wish I could
I must heed what he says to me
“All things work for the good.”

If I could write the life you’d live
I’d fail…don’t you see?
I’ll leave it in much better hands
He’ll write it perfectly.

What Perfect Ending Would You Write for Your Child?

Oh my, I know just how Stephanie feels? I so often wanted to rewrite my son’s story when he was medically fragile. It took a long time for me to leave the pen in God’s hand. How about you? What have you been learning from your child lately? Leave a comment. Read more about Stephanie and her medically fragile son’s heart condition at her blog, With a Hopeful Heart.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Stephanie Ballard is the mother of two sons, her youngest son, Braeden, was born with Kabuki Syndrome and congenital heart defects. Her oldest son, Colin is in the military. She enjoys writing poetry and life lessons about her journey in life.

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Messy Life, But Not Alone

Messy. That’s the word guest blogger Rebekah Benimoff uses to describe recent events in her life. Though surrounded by messiness, she found reasons to be grateful. Her story may open your eyes to reasons you can be grateful, too.

Messy Life, Messy Bits

Here’s one of my favorite quotes from Letters to Juliet: “Life is the messy bits.” Vanessa Redgrave’s character gives us a charming reminder that life without the messy bits is not real life.

Messy Bits All Day Long

Yet it can be overwhelming when life seems to be only messy bits. This week my own life included a trip to the children’s hospital. Tyler was a little trooper despite a full day of bloods testing and x-rays, and lots of waiting in hospital halls stretched before us as he was poked and prodded. Most of the day I was not panicked—just weary and longing for resolution. At one point I found myself having a moment.

Messy Bit Moment

I was sitting on the floor next to a pile of blankets and bags and diabetes supplies, waiting for my boy to come out of the bathroom. And I was tired. Not just physically tired, for there are times when weariness reaches past the soul and into the spirit. And during that very long wait, I leaned my head back, and clung to the hope that we truly were on our way to answers of some sort. About then, my phone beeped. Signal came through and prayers and well wishes and messages of love filled up my screen—and my heart.

Messy Life, But Not Alone

Tears of gratitude flowed as I was reminded that even when my life is messy, I am not alone. What a relief! When life is chaotic, and outcomes uncertain, I do not really need a neatly arranged picture of a religious icon. What I really need in the messiness and the muck and the blood and guts and various other bodily fluids is those reminders that I am not in this alone. I don’t need pat answers, or explanations of how this is all part of God’s plan. I need what is real and tangible, even through an inbox: prayer and community and support.

What touched me most was not having everything miraculously revealed. What spoke to my gaping needs was not an answer. What encouraged my heart was the knowledge that though I was down on the floor in a hospital hallway with a sick kid stuck in the bathroom, I was not forsaken. I was not alone. Support was tangible, and tears of gratitude and release streamed down my face as I participated in the fellowship of prayers offered for my boy—and for me.

Messy Bits and God’s Compassion

When needs in your life spin out of control, who do you go to? Do you let it be known that you are struggling? It might be second nature to try to pull yourself up by your own boot straps and march on, but I am learning that when I reach out for help beyond myself I gain so very much!

When my life is lived in the messy bits, human hearts are a beautiful conductor of divine compassion. What sustains and encourages is the sweet outpouring of love: friendship offered, hands held out, cyberspace and hospital waiting rooms bridged, anxieties soothed, rest given. This is one more way that God offers provision. All we need to do is let needs me known and be willing accept the much need help.

How Do You Know You’re Not Alone When Life Gets Messy?

Do you identify with Rebekah’s situation? Can you remember a time when you realized you weren’t alone in the messy bits of life? Leave a comment to share your story.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop-up box and the second at the bottom of this page.

By

Rebekah Benimoff is the wife of a husband with PTSD and the mother of two young men, both of whom grew up with medical and special needs. She blogs at In the Chaos…. and In the Calm (justmemama.blogspot.com).