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?”

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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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Keep Hoping for Our Children with Special Needs

Keep Hoping for Our Children with Special Needs

Keep Hoping for Our Children with Special Needs

Guest blogger Maggi Gale shares a word of hope for a future and a fortress for our children with special needs. Enjoy!

Keep Hoping

Be careful what you hope for! There are times though, that it’s even more important to be careful to keep hoping than to be careful what you hope for!

So what are you hoping for?
Hoping for the day he will come home from hospital…
Hoping the nightmares will stop…
Hoping for her to go to a “normal” school…

Or, as in the case of our friends whose daughter has been diagnosed with pervasive refusal syndrome, hoping for her to be willing and able to start living her life again.

We recently visited a fort, surrounded by the craggy Hajar mountains, bleak and foreboding in the relentless Arabian heat. Built in the late eighteenth century, the thick mud brick and stone walls made it a secure retreat. Standing on the lookout, I could almost hear the cry of the enemy advancing and see the arrows being fired through angled slat windows.

This fortress was a place of security.

The windows were too narrow to allow ammunition inwards. Here, there was no need to fear. A confined place, but one of safety.

Comfortable?
Not at all.
A place to wait for danger to pass.
A place essential for survival.

We've all been told to be careful what we hope for. But, guest blogger Maggie Gale reminds us that it's even more important to keep hoping for our kids with special needs.

Zachariah speaks of hope as a fortress. “Return to your fortress, you prisoners of hope; even now I announce that I will restore twice as much to you.”

If hope is a fortress, it’s one we can choose to retreat to by holding onto the promises that God has spoken to us. To confine ourselves within the framework of His word and to an awareness that despite every, everything, there is a loving God.

Though he brings grief, he will show compassion,
 so great is his unfailing love.
 He does not willingly bring affliction
 or grief to anyone.

The alternative to hope is as hostile as the Hajar mountains.
Today, be careful that you keep hoping.

We've all been told to be careful what we hope for. But, guest blogger Maggie Gale reminds us that it's even more important to keep hoping for our kids with special needs.

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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Maggi is a wife and mother of two daughters. She is a primary school teacher, having worked in Africa for 14 years before moving to the Middle East. Her passions are her animals and art. Her youngest daughter was born with tracheoesophageal fistula (TEF). This birth condition was to be the start of an arduous journey, impacting the whole family for several years. Through writing, she hopes to turn her experiences into encouragement for others on similar paths.

Author Jolene Philo

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When Special Needs Parenting Brings Too Much New

When Special Needs Parenting Brings Too Much New

When Special Needs Parenting Brings Too Much New

Our family moved in January. Since the day we left the community we called home for 25 years, I’ve struggled to regain my equilibrium. I’ve finally pinpointed the malady causing this lack of balance and affectionately named it…

Too Much New.

Some of the new is time-consuming:
New address notifications,
new routes to new stores and services,
new routines to create and perfect.

Some of the new is expensive:
New curtains and shades,
new gadgets,
new paint and trim.

Some of the new is delightful:
New scenery,
new walking trails,
new trees and flowers in a new yard.

The constant navigating of too much new–both what’s delightful and what’s not–leaves me exhausted at the end of each day.

I haven’t felt this off-kilter in a long time. Not since when we were 25, and our our first child was born. In a heartbeat, we were parents of a child with a medical diagnosis we hadn’t known existed. We were knocked completely off balance as we arrived in the land of…

Too Much New.  

Some of the new was frightening:
New medical terms and procedures,
new chances for survival–or not,
new complications and set backs.

Some of the new was expensive:
New doctor bills,
new prescriptions and supplies,
new travel and food costs.

Some of the new was delightful:
A new baby,
new milestones as he overcame health challenges,
new unexpected friendships.

To read the rest of this post, visit this link at Key Ministry’s special needs blog for families.

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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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.

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Mother’s Day Grace for Moms of Kids with Special Needs

Mother’s Day Grace for Moms of Kids with Special Needs

Mother’s Day Grace for Moms of Kids with Special Needs

A few weeks ago, I woke up crying after an early morning dream. My pillow was wet with tears, and the vivid accusations hurled during the dream—or should I say nightmare?—haunted my day.

Why didn’t you stand up to the doctors?
Why didn’t you ask more questions?
Why didn’t you shield your baby from pain?
Why didn’t you do more?
Why didn’t you?
Why didn’t you?
Why didn’t you?

For two days, I couldn’t escape the memory of the dream. I wondered at its vehemence 35 years after the arrival of our son, his first surgery the day he was born, and his NICU stay. I was shaken and shamed by my inadequacy as a mother. Suddenly, every wrong decision and poor parenting choice I made during my son’s childhood came to mind. Then I looked at the calendar and saw that Mother’s Day was only a few weeks away. Why would my son call or send a card to a mother who couldn’t give him what he needed most at birth?

A mother who wasn’t with him on the flight to the hospital?
A mother who didn’t protect him from excruciating pain?
I wanted to crawl into a hole.

Instead, I thought of the last time my mother stayed overnight at our house before entering a nursing home. She needed me to help her get on and off the toilet, to get in and out of the shower, to dress in the morning and undress at night.

To read the rest of this post visit Key Ministry’s blog for parents of kids with special needs.

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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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.

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A Child With Special Needs Is More Than Numbers

A Child With Special Needs Is More Than Numbers

A Child With Special Needs Is More Than Numbers

A child with special needs is more than numbers. You know that, I know that, and as guest blogger Kimberly Drew reminds us, God knew that when he knit our babies together in the womb. She encourages parents to look beyond test results and to reinforce the fact that every child with special needs is more than numbers. We are all more than the sum of our parts.

A Child with Special Needs Is More Than Numbers

Life begins with numbers.
Nine months.
Centimeters dilated.
Hours of labor.

But it doesn’t stop there. Everything is measured in numbers.

Baby’s weight and length.
Head circumference.
Apgar score.
Breathing rate.
Ounces per feeding.
Diapers a day.

Numbers, numbers, numbers. You come home from the hospital and count the hours between feedings, the hours you get to sleep, and before long you count the weeks it took to see your baby smile. For parents of neuro-typical children the numbers start to spread out into months.

Clothing by month.
Age by month.
Milestones by month.

But for parents of children with special needs, the numbers can take a different turn and exact an emotional toll. For instance, when your preemie baby doesn’t look her age and every stranger who stops to talk to you requires a “disclaimer” about her size. For parents of children with physical and mental disabilities the charts, measuring, and numerical markers aren’t fun.

We had an eligibility evaluation for our youngest who was adopted with special needs. For an hour and a half the test administrator examined everything from how she responds to a voice to how she tries to use her pointer finger. All the while, the test administrator recorded results in her computer. At the end of the test, scores came out.

A typical child’s score is zero.
An advanced child’s is a positive number.
A child with delays has a negative score.

The negative section is even divided into sections. Some negatives are okay…some are really bad. Our daughter was in the “really bad” section, color-coded in red. Just in case we weren’t concerned about her development already, the RED WARNING color made it more apparent that she is severely behind.

Because we have a fifteen-year-old with disabilities, I know this is just the beginning of the scales and charts that we will talk about with a team of people. Her milestones will be measured in the “minis.”

She’s not sitting up, but she raises her arms 25% of the time to reach for me.
One of our older daughter’s goals is to stand up without assistance 3 out of 4 times.

Our daughters’ worlds literally and figuratively revolves around numbers. As parents of a child with special needs, we can start to drown in them. The negative reds can upset us if we let them. It’s important for me, for all of us, to keep these numbers in perspective. When we feel like we’re getting lost in them,  we need to remember that the God who determines the number of stars and names them all, also knows the number of hairs on my daughters’ heads because they matter that much to him. (Psalm 147:4, Matt. 10:30)

We should remember that the world looks at the outward appearance, but the Lord looks at the heart. (1 Sam. 16:7) He does not measure the same way that the world does. My girls are not a number to him, they are not a chart or a growth curve. Neither are your children!

When you are drowning in the numbers, find rest and peace in Psalm 139: 13–18, paying special attention to the numbers in verses 17 and 18.

13 For you formed my inward parts;
you knitted me together in my mother’s womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you, when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
17 How precious to me are your thoughts, O God!
How vast is the sum of them!
18 If I would count them, they are more than the sand.
I awake, and I am still with you.”

Your Thoughts?

How do you define your child with special needs with more than numbers? Share your insights in the comment box!

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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Kimberly grew up and went to college in the small town of Upland, IN. She graduated from Taylor University with a degree in Elementary Education in 2002. While at TU, she married her college sweetheart and so began their adventure! Ryan and Kimberly have four amazing kids on earth (Abigail, Jayden, Ellie, and Cooper), and a baby boy waiting for them in heaven. Their daughter Abigail (Abbey) has multiple disabilities including cerebral palsy, a seizure disorder, hearing loss, microcephaly, and oral dysphagia. She is the inspiration behind Kimberly’s  desire to write. In addition to being a stay at home mom, Kimberly has been serving alongside her husband in full time youth ministry for almost fourteen years. She enjoys working with the senior high girls, scrapbooking, reading, and music. You can visit Kimberly at her website, Promises and Perspective.

Author Jolene Philo

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Be Still and Know

Be Still and Know

Be Still and Know

Be still and know that I am God.
Psalm 46:10

Two weeks after moving to our new house, we were still getting acquainted with the place. “Where does this go?” Hiram queried at least once a day while putting away dishes in the kitchen. “Which way to the bathroom?” I wondered before answering my middle of the night call of nature. But day by day, the floor plan became more familiar and the contents of cupboards and closets made more sense. Every morning our house felt more like home as I settled into my comfy chair and study our pastor’s upcoming sermon text from John 1.

I suspect God is using our move to reveal truths from the first book of John that I’ve never noticed before. For some reason, the passage where Nathanial encounters Jesus makes me shiver with a delight that reaches to my very soul.

“How do you know me?” Nathaniel asks Jesus when they first meet. When Nathaniel learns that Jesus knew he’d been hanging out under a fig tree, he blurts out the truth he just realized. “Rabbi, you are the Son of God! You are the King of Israel!” To which Jesus replies, “You ain’t seen nothing yet! Stick with me, and you’ll see heaven opened, and God’s angels ascending and descending on the Son of Man.”

About now, you’re probably scratching your head and wondering, “What’s so delightful about that?” The delight flows from how Nathaniel’s exchange with Jesus reveals a basic truth about every believer’s relationship with him. While we are becoming acquainted with Jesus, he already knows everything about us and our children–more than we can ever hope to know about ourselves.

I see my own human frailty and self-absorption in this truth of Scripture. My perception is that I magnanimously allowed Jesus into my life at salvation, when in reality, he was already there. He’s always been there waiting for me to become aware of his presence. Waiting for me to engage in his relationship with me that is not about him making my acquaintance. It’s about him revealing who he is so that every day I can know him more intimately.

This relationship is available to all believers, an everlasting relationship that begins with salvation but doesn’t end with this life. Instead it continues in the life to come. In this world and the next, Jesus constantly reveals more about himself. Though he has known us completely since before time began, our knowledge of him will never stop growing. Throughout eternity, as Jesus shows us more of his character, those who love him will see the angels descending and ascending on him, and we will respond with shivers of delight, “You are the Son of God! You are the King of Israel!”

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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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

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