The Puzzle of Parenting a Child with Special Needs

The Puzzle of Parenting a Child with Special Needs

The Puzzle of Parenting a Child with Special Needs

The puzzle of parenting a child with special needs is something we all grapple with. Guest blogger Stephanie Ballard is here with a poem that explains where she found the missing piece of her puzzle and the peace it brings to her. Maybe what she wrote will help you find the piece and the peace you’ve been searching for, too.

The Puzzle

Today I felt a little sad
about the things we face;
Today I guess it slipped my mind
in all things there is grace.
The pieces of my life don’t seem
to fit the way they should.
My Guide to Life went missing.

(I know that can’t be good.)

And if I had a pickup truck,
then it would not be long
before I turned my life’s story
into a country song.
Tired…wasted…empty–
convictions seem diluted.
Life is a complex puzzle.
No instructions included.

I just collect the pieces
while knowing His plan is concealed,
and have the faith that someday
all things will be revealed.
When the storm clouds head our way,
and I am left spinning and guessing;
life’s ordinary moments
become my own encrypted blessing.

Sometimes I lose momentum.
Sometimes I fall behind.
My attitude takes two steps back,
and I fear I’ll lose my mind.
I wonder, can I do this?
I wonder, am I strong?
I thought I was so capable,
But what if I was wrong?

The puzzle lays before me
all scattered where I sit.
I pray God gives me wisdom
to make the pieces fit.
What if life’s most precious gifts
don’t fit with sheer perfection?
What if we must prepare the way
for such an intersection?

I look at all the puzzle pieces
scattered in my hand,
and whisper ever silently,
Please help me understand.
The image comes together,
the picture grows more clear.
It’s only through adversity
that we can face our fear.

And when each piece has found it’s place,
I’ll sigh in sweet reflection.
Life’s purpose can be clearly seen
in silent imperfection.

So I will face this day with hope,
not give into defeat.
I’ll trust this puzzle called our life
will someday be complete.

Does Stephanie’s poem resonate in your heart? Leave  a comment for her in the box below if you like.

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.

Author Jolene Philo

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Why Diane Dokko Kim Wrote Unbroken Faith

Why Diane Dokko Kim Wrote Unbroken Faith

Why Diane Dokko Kim Wrote Unbroken Faith

Different Dream welcomes guest blogger, Diane Dokko Kim, for the second in her three-part series. Today, Diane talks about about her family, and the encouragement found in her new book, Unbroken Faith: Spiritual Recovery for the Special Needs Parent.

Would you tell Different Dream readers a little bit about yourself and your family?

My husband Eddie and I have been married since 1999. We’ve served together in local church ministry for over 25 years, while working in tech in Silicon Valley. Our entry into the world of disability began in 2004, after our family returned from serving abroad on missions. At the time, our 18-month-old son, Jeremy, wasn’t talking. We thought he might be confused over all the languages he’d heard, so we had him checked out for a speech delay. Several months –and evaluations—later, we were devastated when he was diagnosed with autism instead. Since then, we’ve added additional diagnoses –and another son ☺ – to the family. God has also redeemed that initial wounding, and repurposed it into a desire to comfort other struggling families, with the comfort we received from Christ.

How would you summarize Unbroken Faith?

Unbroken Faith is the book I wish had been available during our season of grief, immediately post-diagnosis. I was destroyed. My child was cognitively disabled, and I found myself spiritually crippled. I struggled for years: How did God let this happen? Why us? Was He going to fix this? How was the Bible was relevant? How dare God claim He understands everything we go through? How could I trust Him again? Unbroken Faith details how Word of God settled those core questions for me. The very thing I thought would destroy my faith, God used to draw me closer to Him, and to understanding His heart in a deeper way.

As the parent of a child with special needs, what’s your number one piece of advice for other parents raising kids with disabilities and special needs?

Give yourself permission and time to grieve. It’s okay – necessary, actually—to grieve the loss of expectations for our children’s futures and for our family. In Psalms, God devotes a significant amount of “real estate” to validate human grief, angst and doubt. Our grief matters to God because if we don’t grieve, we can’t heal properly. If we can’t heal, we’ll remain stuck in bitterness and resentment, unable to move forward in hope or anticipation of the new blessings – the different dreams – God desires to give.

What do you want readers to take away from Unbroken Faith? 

We are not alone! God understands how we feel, because He grieved the loss of expectations for His children, too. Despite preparing perfection for them in the Garden of Eden, His children didn’t turn out as planned, and His heart was filled with pain. God gets us in a way no one else can. And He is not done yet! God is a redeemer. What the enemy intended for harm, God can redeem and repurpose into a blessing. I pray that readers would come away with a deeper understanding of God’s heart. He suffers with us, and for us. He has also has plans and purposes for us that are immeasurably more than we can ask or imagine.

I also hope and pray that readers will see how the Bible has everything to do with the unique challenges we face as families living with disability. The Word of God is timeless and powerfully relevant to the gritty realities of special-needs parenting. The Bible has power to transform, heal, and bind up that which has been broken. God will restore and heal bodies, either in this lifetime of the next. But He can heal our hearts and restore our hope… now.

Part 1
Part 3

Diane Dokko Kim

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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Diane Dokko Kim is the mother of a child with multiple disabilities including autism and ADHD. Since 2008, she has served as a special needs ministry consultant, partnering with Joni and Friends as a national speaker, trainer and ministry ambassador. Author of Unbroken Faith: Spiritual Recovery for the Special Needs Parent (Worthy, April 2018), her work has been featured in Orange’s Parent Cue, Parenting Magazine, Dandelion Magazine, and Not Alone. Diane’s passion is to encourage weary parents and empower them to experience the timeless relevance of God’s Word applied to the gritty realities of special needs family life. She and her husband, Eddie, live in the heart of Silicon Valley with their two sons. Connect with her on Facebook or www.dianedokkokim.com where she blogs on being wrecked, redeemed and repurposed.

Author Jolene Philo

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A Special Needs Prayer: Just a Bit Longer

A Special Needs Prayer: Just a Bit Longer

A Special Needs Prayer: Just a Bit Longer

The special needs prayer of one parent may be different from the prayer of others. But for parents raising kids with complex medical problems, their prayer is similar to the request their children make when it’s time to leave the park or the pool or other play. Please, please. Just a bit longer?  Guest blogger Stephanie Ballard explores that prayer in this poem.
 

A Special Needs Prayer: Just a Bit Longer

A picture perfect summer day
Spent playing at the park.
Soon it’s time to head on home,
It’s starting to get dark.
And so, I yell, “It’s time to go,”
(My child starts to cry.)
He looks at me with pleading eyes,
And then he asks me, “Why?”
Of all the answers in my mind,
None seems quite adequate.
I prepare for what I know will come:
A full blown crying fit.

He throws himself onto the ground,
Forgetting Mommy’s much stronger.
I lift him up into my arms.
He wails, “I wanna stay longer!”
And ask we walk on toward the car
He says, “Oh, Mommy, please?”
I say, “I’m sorry, sweetheart,”
Then give his hand a squeeze.
Strapped in his car seat,
We’re leaving the part of the day.
He’s giving me that petulant look
That says, “Why can’t I have my way?”

And as I’m driving homeward,
I think, “Imagine that!
I can be tough after all.
I have this drill down pat.
My child wants what he wants now.
He does not like to wait.
I see this trait within myself.
I can indeed relate.
He thinks that he will change my mind
With loud, persuasive tears.
And yet, this seems to be the way
That I bring God my fears.

In the moment…

I watched him swimming in the pool,
All giggles, kicks, and splashes.
And i could see my life with him,
A thousand tiny flashes.
And when we read his favorite book,
He turned each page with care.
I thought about my hopes for him,
While knowing life’s not fair.
He wrapped his arms around my neck,
Lips puckered for a kiss.
I know I’d give all I have
For more times just like this.

He may not always be with me;
Life isn’t always kind.
Then I will have just memories
Etched in the depths of my mind.
“Take things one day at a time,”
Someone once said to me.
But I would give most anything
To just have…certainty.

And as we walked along the beach,
His tiny hand in mine,
I thought, “I love these moments
When everything is fine.”
He plops onto the sandy shore
And scoops a handful of sand.
Somehow I know God’s watching
This life he so carefully planned.
I know there are no guarantees
Of what tomorrow holds,
But I am filled with gratitude
As each new day unfolds.

These moments make it all so clear.
And no, I’m not wise or stronger.
I am just God’s child myself
Always asking, “Please just a bit longer?”

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

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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Top 10 Things I Wish I Could Give Up for Lent

Top 10 Things I Wish I Could Give Up for Lent

What I gave up for Lent has not been a rousing success. Here's what I wish I'd given up instead.

This year I decided to give up snacks for Lent. With my efforts failing more often than not, I’ve come up with a long list of what I wish I’d given up instead.

10. House cleaning. This one I would willingly doing for Lent and beyond.

9.  Being an unpublished fiction writer. I’m working diligently on this one. But parts of accomplishing it are beyond my control.

8.  A sentimental attachment to stuff. My closets would be much happier if this had been my choice. Plus, it would make #10 more feasible.

7.  An illogical desire for a swimming pool. It’s a luxury I can do without and an unwanted, extra task since the Man of Steel’s take on it is, “Go ahead and do it…as long as you’re the one who cleans it.”

6.  Messy closets and dresser drawers. See #8.

5.  Impatience. Except I want to give this one up immediately, as in right now, rather than spend 40 days grinding away at it.

4.  Self-righteousness. Mom used to call it a tendency to pat myself on my back. But there’s more to it than that. Like a tendency to elevate myself at the expense of others. A tendency I wish was easier to shake.

3.  Guilt. The unfounded, irrational kind that sucks away energy that could be better spent on lifting others up rather than mentally beating yourself down.

2.  Worry. The ever-present companion of all parents. Even after their kids are grown, gone, and on their own. The slightest sniff of distress in their lives and the worry meister rears its ugly head.

1.  A divided heart. Each time we or friends and loved ones leave, whether from town to town or from this world to the next, my heart breaks. A piece of it is left behind where we once lived or travels on with those leaving me behind. Forty days of Lent spent contemplating what Jesus gave up for the world are not enough to repair the brokenness, nor should they be. Instead these 40 days call me to contemplate the glory yet to come. The eternal day when all who hope in Christ will be reunited and every divided heart will be made whole.

What do you wish you’d given up for Lent? Leave a comment.

Fantastic Friday: What Have I Gotten Myself Into?

Fantastic Friday: What Have I Gotten Myself Into?

John Jolene GainThis post from 5 years ago caught my eye while searching the Gravel Road’s archives. Why? Because this April our family is celebrating the birth of a grandchild, I’m attending a conference in Virginia right now, and I’m looking forward to a book release on April 27. Events as momentous as the events of April 2010 which included…well, you’ll find out as you read this week’s Fantastic Friday post.

Yeah, that’s me in the back row with the oh-no-what-have-I-gotten-myself-into expression. The other two are my brother and a cousin. There’s another cousin kneeling in front, but I can’t get her to show up. (Sorry Nell!)

When the good people at Discovery House Publishers emailed on April 13 to say they accepted my proposal for Different Dream Parenting: Raising a Child with Special Needs, my response was similar to the one in the picture. It was the day after we returned from our son’s wedding so my energy level and brain functions were nil at the time.

Needless to say, it took awhile for the news to sink in. Once the old brain cells revived, my first response should have been of the whoop-and-holler-of-joy variety. But no. It was more of the what-have-I-gotten-myself-into and why-did-I-think-I-could-write-a-book-on-this-subject variety.

After a few calming breaths and some positive self-talk, the panic subsided, at least until I printed off the chapter summary that was part of the original proposal. After reading the plan written last December, panic returned, along with self-doubt. I felt as poorly trained and utterly inadequate for the task at hand as I had each August of my twenty-five year teaching career.

But over the next several days, God calmed me down, patted my head, and held my hand. Every Bible passage I read was about how God prepares his people for his work. Every book I opened contained valuable resources. Visions of experts and parents I’ve met in the past few years – many since Different Dream was released – came to mind.

“Write them down,” a voice whispered inside my head. “Make a plan.”

I started a list of people, books, websites, and organizations. In minutes, the list was two pages long. Their expertise matched many of the subjects to be addressed in my book, though a few holes remained. In the next few days, previously unknown experts appeared on my radar screen. The timing was uncanny.

The voice in my head was clear and insistent. “You’re not in this alone. I’ve spent my life preparing you to do this. You take the logical next step and leave the rest to me.”

Living by faith. Writing by faith. That’s what I’ve gotten myself into.

Let the adventure begin.