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.

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

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

See Jane Ride! Cover Reveal

See Jane Ride! Cover Reveal

See Jane Ride! cover reveal time has arrived. I love the way the design captures the atmosphere of the book and hints at the reason "ride" is in the title. Jane's fans may be shaking their heads at the idea of her sporting a doo-rag and black leather. That attire was...

read more
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.

By

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

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

See Jane Ride! Cover Reveal

See Jane Ride! Cover Reveal

See Jane Ride! cover reveal time has arrived. I love the way the design captures the atmosphere of the book and hints at the reason "ride" is in the title. Jane's fans may be shaking their heads at the idea of her sporting a doo-rag and black leather. That attire was...

read more

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

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

See Jane Ride! Cover Reveal

See Jane Ride! Cover Reveal

See Jane Ride! cover reveal time has arrived. I love the way the design captures the atmosphere of the book and hints at the reason "ride" is in the title. Jane's fans may be shaking their heads at the idea of her sporting a doo-rag and black leather. That attire was...

read more
When You Know Too Much

When You Know Too Much

When You Know Too Much

This summer our family embarked upon the grand adventure of multi-generational living. It began in May when our daughter, her husband, and their then 13-month-old son moved into our upstairs as they transition from starving graduate student status to starving artists status. The adventure is going well, everyone is adjusting, and my husband and I love sharing every day life with our grandson.

But sometimes, my joy is dimmed because I know too much.

What I know about special needs, disabilities, and childhood trauma gets in the way. When my grandson, now a robust 16 months old, running around on his tiptoes, a little voice inside me whispers, “That can be a symptom of autism.” When life gets very exciting and he flaps his chubby arms in delight, I think, “There’s another symptom.” When I compare his limited vocabulary to what my son and daughter, his mama, were saying at his age the voice whispers, “Perhaps he’ll be non-verbal.”

The whispers are a consequence of knowing too much.

Please understand. This little boy is extremely dexterous. His arm flapping doesn’t resemble the hand-flapping associated with autism. He speaks more clearly by the day, understands and follows verbal directions, loves interacting with people, and has a highly expressive face. He not only makes eye contact, but also craves it.

I worry anyway, because I know too much.

God has used what I have learned about and experience with special needs and disabilities to great good. He’s empowered me to write books to encourage and equip parents, to provide special needs ministry training, to facilitate support groups, and more. But sometimes that same knowledge and experience results in thought patterns that lead to excessive and obsessive worry that steals my joy. The kind of worrying that leads to doubt, to despair, and to sin. The kind of thinking familiar to far too many in the special needs and disabilities community. Maybe you’re familiar with it, too.

To read the rest of this post, visit Key Ministry’s Special Needs Parenting blog.

Do you like what you see at jolenephilo.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

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

See Jane Ride! Cover Reveal

See Jane Ride! Cover Reveal

See Jane Ride! cover reveal time has arrived. I love the way the design captures the atmosphere of the book and hints at the reason "ride" is in the title. Jane's fans may be shaking their heads at the idea of her sporting a doo-rag and black leather. That attire was...

read more
When Bad News Does a Number on Your Faith

When Bad News Does a Number on Your Faith

When Bad News Does a Number on Your Faith

After you have suffered for a little while,
the God of all grace, who called you to His eternal glory in Christ,
will Himself perfect, confirm, strengthen and establish you.
1 Peter 5:10–11

At her last visit to the dentist my 87-year-old mother learned that the aging process is doing a number on her teeth. After her hygienist suggested a deep cleaning was in order, Mom’s response was less than enthusiastic. “It was a terrible appointment,” Mom said when we met in the waiting room. “I could have gone my whole life without news like that.”

I made suitable, empathetic noises while we scheduled the extra cleaning. I practiced active listening techniques during lunch and tried to cheer her up. “Look at the bright side, Mom. You’re almost 88. You have all your teeth. You have dental insurance that makes the procedure affordable.”

She was inconsolable. “I just wasn’t expecting this kind of news,” she said. “It’s awful.”
“Mom,” I said as my supportive, loving daughter veneer peeled away, “you’re acting as if you’ve got cancer instead of early stage periodontal disease. Try to put this in perspective.” But she couldn’t. At least not until her son visited her and managed to coax her out of her funk by mentioning that he’d had the same procedure done a few years back.

Reflecting on Mom’s situation, I see similarities between the way she reacted at the dentist and how I responded when our son was young and the doctor delivered news so bad it did a number on my faith.  First, my reaction focused on what was wrong. Not only that, but I viewed past and present blessings as my right. I rarely expressed gratitude when our son’s health improved, but complained loudly when it went downhill.

Second, I often responded to my child’s situation from a purely temporal and earthly perspective. Instead of standing firm on the rock of God’s sovereignty, I grew despondent and fearful when our parenting experience unfold differently than expected. When another surgery was scheduled, when a virus laid my baby low, or when he refused to eat, I acted as though the possibility of death meant the end of all things–though as a Christian I claimed to stand on the promise of eternal life with Christ.

Christian parents of kids with special needs have little to offer our children or other parents when we respond with ingratitude, hopelessness, and fear. But how can you avoid those faithless responses when bad news about your child does a number on your faith? A clue to that question’s answer can be found in Mom’s recovery from her funk. It ended when a visit with her son changed her perspective.

Similarly, by spending time with God’s Son in His Word, your perspective and your future responses will change and your faith will grow. When you consider how Christ’s absolute confidence in God’s sovereignty and an eternal perspective influenced His responses to the violent death He suffered. When you cling to the promise of Jesus to never leave or forsake us. When your faith and your gaze stand upon the risen Christ and anticipate His future resurrection.

When your feet are firmly planted on those realities, you can trust Jesus and respond with hope and confidence. Because you will know, beyond a shadow of a doubt, that what He promises is absolutely certain. God’s eternal and unchanging best is yet to come.

Do you like what you see at jolenephilo.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

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

See Jane Ride! Cover Reveal

See Jane Ride! Cover Reveal

See Jane Ride! cover reveal time has arrived. I love the way the design captures the atmosphere of the book and hints at the reason "ride" is in the title. Jane's fans may be shaking their heads at the idea of her sporting a doo-rag and black leather. That attire was...

read more