That Perfect Scar

That Perfect Scar

That Perfect Scar

Guest blogger Stephanie Ballard stays busy caring for her son with heart-related special needs. But as February, also known as Heart Month, drew to a close, she found enough time to pick up a pen and write a poem. It’s a poem to her son, who had heart surgery as a tiny baby, and lives with a perfect scar on his torso. If you’re the parent of a child who had early surgery, you will want to have a tissue ready before you go any further.

The Perfect Scar

Sometimes I have those moments
When I think…life’s just not fair
Then I think of all you’ve been through
And I see the scar you bear.
A faded line right down your chest
Made with such careful precision
We wanted you to have a chance
Could there be any other decision?
And so I trace that “perfect” scar
Made with the utmost care
And I realize there is purpose
Behind this scar you wear.

What have you taught us?
You’ve taught us how to face a storm
(Some things are just out of our hands)
Life has no handy guidebook
(Things don’t always go as you’ve planned)
People come into our lives
(Sometimes it is just for a season)
But God brings them into our lives
(And I know that He must have a reason)
Normal, uneventful days
(The kind that we always hoped for)
These are the days I say, “Wow, God!”
We just never know what lies in store.
If I can place a feeding tube,
Without even getting distraught
Perhaps, maybe, I might be
Much stronger than I thought.
It’s okay to be afraid
And it’s all right to cry
It’s okay to feel lost sometimes
It’s even okay to ask…why?
You face life with courage
(Knowing God set you apart)
Every little thing you do
You do with all of your heart.
No crystal ball exists for us
(To see us through each strife)
We only have one wish for you…
An ordinary life.

You’ve taught us to love one another
(Helping each other to cope)
You’ve taught us compassion for others
You’ve taught us to never lose hope.

You already have quite a story
Which you can someday share
And I can see it’s beauty
Behind that scar you wear.

~Stephanie Ballard

Does Your Child Have a Perfect Scar?

Are you the parent of a child with a perfect scar? Have your years parenting your child revealed a purpose for what your child has gone through? Leave a comment in the box about what you’ve learned…or perhaps are still learning from your child’s perfect scar.

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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.

Author Jolene Philo

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Fantasic Friday: Impatient People Like Me

Fantasic Friday: Impatient People Like Me

Gap in the CloudsFriday on this Gravel Road means it’s time to dig through the archives for a past post worth another read. This one hails from February of 2013. Reading it was a bit discouraging, as it showed my impatience hasn’t increased much in the past 2 years. Anyone else suffer from this affliction? Leave a comment R-I-G-H-T N-O-W so we can start a support group pronto!

This past Wednesday was not a good day.

First, I was supposed to meet a friend for coffee in the morning and because I’d written the time down wrong, got there a half hour late. Being an impatient person, I hate to keep others waiting.

But that wasn’t the worst of it.

After working on a blog post for over almost two hours, it refused to come together the way I wanted. Impatient people like me don’t have time to waste spend almost two hours on a single blog post.

But that wasn’t the worst of it.

The google chat audio feature was malfunctioning on my computer, so I missed an online meeting in the afternoon. Impatient people have no patience with technical glitches.

But that wasn’t the worst of it.

A publisher rejected a piece I wrote for a devo Bible being compiled by a friend. Not only that, the publisher wanted extensive citations (including book page numbers) for a half-dozen quotes for other pieces I’d written. Impatient people don’t enjoy skimming long books to find page numbers.

But that wasn’t the worst of it.

Hiram spent all afternoon trying to file our income tax with Turbo Tax. He’s usually pretty patient, but after several hours of online chats with Turbo Tax experts and two phone calls, he was a little cranky. Impatient people like me think we’re the only ones with a right to be cranky.

But that wasn’t the worst of it.

The cold Hiram’s been fighting for two weeks came back with a vengeance that night. He ran a temperature again and coughed all night. Which didn’t sit well with a woman who needs plenty of sleep in order to be patient.

But that wasn’t the worst of it.

The worst of it was this. I woke up Thursday morning and realized impatient people like me spend all their time looking at gray skies. We are so focused on the gloom, we don’t even see the gap in the clouds and the sun streaming through.

Impatient people like me forget they have
friends to visit,
blogs to write,
a computer that functions flawlessly 99.9% of the time,
writing projects to complete,
income tax refunds to file,
and a husband whose job provides sick leave and excellent health insurance.

Yes, that’s the worst of it.

Dear Father, forgive me for not slowing down to look for the gap in the clouds. Forgive me for focusing on the gloomy clouds and missing the joy of the Son. Please teach me to be patient…as quickly as possible. Amen.

Choosing to Draw Near When Crushed by Special Needs

Choosing to Draw Near When Crushed by Special Needs

Choosing to Draw Near When Crushed by Special Needs

The past few months have been difficult for guest blogger Rebekah Benimoff. She’s here to explain what kept her from giving up when hope for her son with special needs was nearly gone.

Choosing to Draw Near When Crushed by Special Needs

Tonight was spent searching.

Searching back over ramblings from this medically-intense journey, rereading lessons learned along the way. Stories from past seasons jog memories, and rather than linger, I kick against the goads. Another diagnosis has been added, and I am already stretched thin. I know that each new diagnosis must be grieved, worked through. But I’d rather be where I was, in a place of schedules and simpler uncertainties. I’ve come so far, still I have much to learn and live out.

Again I am caught in a crossfire of medical chaos. Unanticipated? Not really. Unaccepted? For sure.

Drawing Near to God Who Sustains Breath When Crushed by Special Needs

No parent wants to watch a child suffer. A mother’s heart is pierced by her child’s pain. Pieces of me cleaved and torn again, old fears resurfacing along the way. For years I’ve spent my days carefully guarding a sometimes fragile life–a multitude of moments seeking to accept that it is God who sustains breath while I am stretched to find balance in the roles of caregiver, teacher, nurturer. A new label has me asking Have I done this well? Not perfectly, for my flaws are gaping still, but well?

Some days, yes. Other days I am a mess and must simply trust in God to fill in the gaps in my mothering.

Drawing Near to the God of New Beginnings and Special Needs

Years ago, I wrote of new beginnings:

I am finding that faithfulness is a choice. It does not happen by chance. I have been stretched; this choosing has not “come naturally”. It has taken a great deal of effort to concentrate on keeping the commitment, especially when I have little energy left. Sometimes I have to grit my teeth and push myself to step into Him. I am finding that as I shake off the slumber, even when I am dead tired, my soul is alive in Him. I am learning to make a conscious effort step away from the things that He is calling me out of, and instead make the choice to advance into Him. To go deeper still.

I am struggling to return to the habit of exercise. In past seasons I’ve found release and much relief in movement. Yet now I am tired, worn- physically as well as emotionally. Again I find I must fight off lethargy, shake out of the bleariness of soul and body. I do not want to get up.

Drawing Near to the God of Simplicity and Special Needs

I want to recover. I want to find respite in old comforts, take my mind off the fears and the stresses, and simply enjoy shopping or indulging in a delicious delicacy. I’ve been fighting this battle for so long, and I just want a little luxuriating along the way. In my heart of hearts I know ribbons and treats are passing pleasures which offer only temporary contentment. Still, I find myself climbing up to the altar while looking for a ram caught in the thicket; I want a way out. I want simplicity to return to this jagged life–I want wellness and wholeness and relief from the struggles that consume my schedule and my energy.

As my lack of control comes to light, fear rises.
I am propelled forward, each step permeated by a numb distress.
I press on, uncertain of the outcome.
Prayerful in one moment, resisting in another.
Longing to be cradled, yet too worn to climb into a tangible embrace.

Drawing Near to the God Who Is With Me and My Son with Special Needs

I know God is with me, yet struggle to hear the soothing Voice–a whisper threading through sadness and yet another loss. Unknowns are daunting, new treatments bring uncertainty. Again I have a choice: Will I struggle through alone, or allow Love to draw near?

Years ago, I reconciled to this: It is very important be obedient so that I can be drawn deeper into Him. So I get up and propel myself into my prayer closet… On the floor, kneeling before the space heater, draped in a Snuggie, the Lord and I meet.

Now, in this season, I have another opportunity to surrender and draw near. I am so tired. I don’t know how to get to the place where I am no longer afraid to lose my son.

Again it is time to fight for wellness, to propel myself into the only true, safe place–God’s heart, holding me in the midst of pain, sorrow, even grief and fear. I grasp the truth that He is the gift in the suffering. I cannot know the future, nor can I control the present. Yet I do know the only One who is Comforter and provider for me- and my precious son as well.

How Do You Draw Near When Crushed by Special Needs?

Have you ever felt like Rebekah? Do you feel like her today? Right now? How can you draw near to God in this dark time? What do you need to make it happen? Leave a comment if you wish.

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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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).

Author Jolene Philo

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Do Not Be Afraid

Do Not Be Afraid

Do Not Be Afraid

This month marks the first anniversary of the publication of Sun Shine Down, Gillian Marchenko’s transparent memoir. In it, she tells about coming to terms with her third daughter’s diagnosis of Down syndrome, and her slow and reluctant falling in love with her baby girl. Today’s guest post celebrates Gillian’s daughter, the anniversary of Sun Shine Down, and the faithful presence of God in our troubles. At the bottom of the page, you’ll get the scoop on how to enter the give away for a copy of Gillian’s memoir.

Do Not Be Afraid

The phrase “Do not be afraid” is written in the Bible 365 times. That’s a daily reminder that God is in control! Whatever you a dealing with today, give it to Him and watch how God takes care of you.

A friend of mine posts this status on Facebook and it immediately gives me pause.

Although I’ve been to Bible college, I wasn’t aware that “do not be afraid’ is in the Bible 365 times. Wow. One for every day of the year. Amazing. My feet start to tingle and my face grows hot. I reread the sentences in awe.

“Thank you, God, for this,” I whisper.

Too often, as a parent of two girls with significant special needs (Polly has Down syndrome and a stroke and seizure disorder called Moyamoya. Evangeline has Down syndrome, too, and was diagnosed with autism just this last year), I let fear rule.

Truth be known, I’ve lived mostly afraid for the last eight years, ever since my ears first heard the words ‘Down syndrome.’ Since then there have been strokes, missed developmental milestones, seizures, brain surgeries, social regression, tonsils removed, vertebrae problems, biting, scratching, tears, and too many other situations and incidents to name. I learned quickly how to walk around with one foot elevated.

I’m always waiting for the other shoe to drop.

‘Do not be afraid’ sends a wave of warmth through me. I decide right away to give it my own interpretation. I want to claim it as a promise from God. ‘Do not be afraid’ becomes ‘relax, nothing else is going to happen.’ ‘Do not be afraid’ means ‘enough bad and scary and difficult. Don’t worry about another shoe dropping.’ ‘Do not be afraid’, I imagine God saying, ‘I got this, and everything is going to be okay.’

Oh, how I love my interpretation. Oh, how I want ‘do not be afraid’ to mean those things.

But as follower of Christ, as someone who tries to read and understand scripture, as a person who wants to commune with God, I know better.

‘Do not be afraid’ isn’t in the Bible 365 times so a person will trust that nothing bad is going to happen to her family. Because this is life. We live in a fallen, broken world and bad stuff happens all the time.

365 days a year.

Some beloved verses in the Bible come to mind:

After this, the word of the LORD came to Abram in a vision: “Do not be afraid, Abram. I am your shield, your very great reward.” –Genesis 15:1

Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. –Deuteronomy 31:6

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. –Isaiah 41:10

These verse don’t claim nothing bad or difficult will happen. In fact, all kinds of bad things happened in Genesis, Deuteronomy, and Isaiah.

Instead, these verses tell us not to be afraid because no matter what comes, God is on our side. “I am your shield, your very great reward.” “For the LORD your God goes with you; he will never leave you nor forsake you.” “I will strengthen you and help you;”

Now, this is the correct interpretation.

As a mom to kids with special needs, more shoes will drop. It is just life.

But I am encouraged. I am not alone. God is with me. God is with my family. And because I get to be in his presence through the blood of his son Jesus, I don’t have to be afraid.

When bad things come, I don’t have to be afraid.

“Thank you, God, for this,” I whisper.

“Do not be afraid,” he answers.

Sun Shine Down Book Give Away

Do Not Be Afraid Sunshine DownDo Gillian’s words make you want to read her book? Then you are invited to enter the give way in which one reader will win the copy of Sun Shine Down Gillian is providing. Just leave a comment in the box below by midnight on Saturday, September 20, 2014 to be entered in the drawing. That’s all there is to it!

 

Brave Mothers and Courageous Children

Brave Mothers and Courageous Children

Doe trusting

Last week, my heart grew heavier and heavier
as the media reported more and more bad news.
Downed airliners.
Fighting in the Middle East.
People in this country shouting at refugee children,
holding ugly signs telling them to to home.

I gave God an earful.
I told him I wasn’t sure about living in a world as cruel as this,
a world stripped of loveliness and compassion,
a world devoid of beauty.

And then, God answered,
as He so often does,
on my morning walk.

I looked up,
and there on the edge of the woods,
stood a doe.
Immobile.
I walked closer and closer
to where she stood sentry.
Closer than I’ve ever been to a deer before.

Close enough to see
her heavy udder,
her swollen teats.
She bravely held her ground,
watching over a hidden fawn,
trembling,
but never flinching
as I passed by.

Then, at the end of my walk
as I ascended our driveway,
God spoke again.

A male indigo bunting,
very small,
very young,
sat on the gravel only a few steps away.
He hopped about,
flew into the bushes unsteadily,
then flew with wobbly precision across the driveway
and perched in one tree,
then on the dead branch of another.

I stood,
transfixed by the courageous bird,
patchy with iridescent blue feathers
and intoxicated
with the freedom of flight,
until he took wing again
and flew away.

“My world is filled
with brave mothers,
with courageous children,”
He said.
“My world is filled with beauty.”