The Special Needs Parenting Morning Dance

The Special Needs Parenting Morning Dance

The Special Needs Parenting Morning Dance

Photo Credit: nuttakit at www.freedigitalphotos.net

Guest blogger Kimberly Drew and her husband have been doing a special needs parenting morning dance ever since their daughter Abbey was born. In today’s post, she talks about how they perfected the dance and have learned to embrace it.

The Special Needs Parenting Morning Dance

The alarm clock starts buzzing from the other side of the bed and I nudge my husband with my foot to either turn it off or hit the snooze button. I’m not a morning person.

At all.

In my perfect world, children have no need to be up at 6:30 in the morning. I wake up naturally—around 9:30—and head to the kitchen for an undisturbed cup of coffee. I inhale slow and deep and take a reflective look out my kitchen window.

Sounds dreamy right?

It makes me laugh just thinking about it. We are in a phase of life that involves a mild and consistent level of morning chaos. Saturdays are often a break, Sundays are nuts, and Monday through Friday we do the dance. We have the morning routine of getting our daughter Abbey ready down to a meticulous science. What used to take about an hour when she was smaller, now takes about 30 minutes. 25 is probably more honest.

I like the snooze button.

Ryan gets her up and gets her on the potty for a few minutes. One of us does the diaper change. He gives her breakfast and meds while I do her hair and lay out her clothes. I pack her lunch, he starts getting her dressed. I jump in and help so we are both dressing her at the same time. I put in hearing aids while he starts her special toe-socks made by grandma. We each pick a leg and slap on her braces and shoes. One of us brushes her teeth while the other puts a bow in her hair and double checks the backpack. A last wipe of the face, I get her coat on, he puts his shoes on, bus pulls up, and we each get a two- hug minimum and bye-bye wave.

Voila!

I think if you were to add music and a little slow motion it would look like a dance. It’s taken a long time for Abbey’s daily care to feel equally shared and predictable. We’ve worked really hard over the years to communicate our frustrations and expectations with each other. It’s not easy to work out the kinks and the bumps and the missteps. Around the time she turned 5, we found our groove.

It’s not easy.

It’s never easy…but it’s our life, and I think we’ve come a long way. The truth is, Ryan and I make great dance partners. Not the wedding reception kind—the life kind. I pray that you have someone in your life who is that person for you. I pray that you have a friend, a parent, an in-home caregiver, or a spouse who takes your hand and steps in time with you while you care for your child. If you don’t, I encourage you to open your heart a little wider and let someone in.

It’s no fun to dance alone.

Do You Dance Too?

How about you? Have you perfected a special needs morning dance at your house? Now’s your chance to give a shout out to your dance partner. Have at it 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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Special Needs Turmoil? Be Still and Know True Rest

Special Needs Turmoil? Be Still and Know True Rest

Special Needs Turmoil? Be Still and Know True Rest

 Photo Credit: sirikul at www.freedigitalphotos.net

Holy Week is here, and as much as guest blogger Rebekah Benimoff hoped to write about a Lenten spirit, life as the parent of a teen with special needs got in the way. So today she’s here to share the cry of her mother’s heart and desire to know the true rest we have in Christ who died for us and rose again.

Knowing Rest

Tonight I need a pouring out, and a flood of pouring in. There has been rain and chaos throughout these past weeks, as hormones rage and my boy is growing into a man. Daily calls from the school nurse reporting high blood glucose levels and ketones, while I am at doctor appointments or exercising or grocery shopping, or simply trying to catch my breath. My precious son has been at home quite a bit in recent weeks during these learning days… I can count on one hand the number of days he’s been well enough to remain at school through every class. A test tonight revealed high anxiety levels and a question:

Are you having anxiety attacks?

No, but I am trying to mimic pancreas function in a growing boy and truly, I am clueless as to what to do next. Insulin has been increased, and levels are high one minute and an hour later plummeting. I am confused, and although I focus on tracking and problem solving, it seems trouble-shooting has not kept away disquietude. I’ve walked that path of hushed chaos and I remember truths learned previous seasons. Life can be a holy mess, yet after another chaotic day, this rings true:

The murkier the mish-mash, the more I must cling to the One who embodies holiness. I desperately need Jesus, and while I’d love Jehovah Shalom—the Lord my peace—to smooth out the pandemonium of this life, I know that the God who sees me (El Roi), and knows my every need, will provide (Jehovah Jireh) what I need most—more of the Presence Who fills and sustains.

Speak the name of Jesus and darkness flees.
Cry out for power and wisdom beyond myself, and the Voice that soothes whispers love.
Pour out every anxiety upon the altar and know Peace incarnate.
Lean into the arms of Love and be held, cradled, and comforted.

I love You, Eternal One, source of my power, who holds me and shelters me in times of chaos.
The Eternal is my rock, my fortress, and my salvation—my safe-covering, my saving strength.
He is my True God, the stronghold in which I hide—my shepherd, He IS my safe place.
My strong shield, the horn that calls forth help, and my tall-walled tower—my protector, my provision.

I am rescued from the snare of my enemy, from fear and despair, from weakness and uncertainty.

I call out to the Eternal, who is worthy to be praised—that’s how I will be rescued from my enemies.The bonds of death encircled me; the currents of destruction tugged at me;the sorrows of the grave wrap around me;the traps of death lay in wait for me. (Psalm 18:3–5; the Voice edition)

I am set free from fear of death and pain, from confusion—and even the many difficulties of managing unpredictable medical needs—for I know Who to invite into these chaotic days:  The Everlasting, The Alpha and Omega, who is my Rock, my stability when the foundations of my world are shaken. 

In my time of need, I called to the Eternal; I begged my True God for help. He heard my voice echo up to His temple, and my cry came to His ears. (Psalm 18:6; the Voice edition)

Through raging hormones, unstable blood glucose levels and a teen who’s felt ill more days than he’s felt well, there is One I can cling to.

He reached down His hand from above me; He held me. He lifted me from the raging waters. He rescued me from my strongest enemy, from all those who sought my death, for they were too strong. They came for me in the day of my destruction, but the Eternal was the support of my life. He set me down in a safe place; He saved me to His delight; He took joy in me. (Psalm 18: 16–19; the Voice edition)

Tonight I recognize the need to be still and know the presence of the Lover of my Soul, the One who takes great joy in loving me. My All in All, the quencher of my thirst, the Giver of all rest and provision. Anxiety laid down as prayer sloughs away the restless cares of my heart.

For who is God besides the Lord? And who is the Rock except our God? It is God who arms me with strength and keeps my way secure. (Psalm 18:31–32; NIV edition)

My man-child said it this week: the only thing predictable about life is its unpredictability. I can’t count on trends of blood glucose levels and best guesses of insulin needs. But I can count on, believe, and rest in my Rock, my fortress, the Most High God who showers me with love and provision in every season; the Lord my Peace, Who is the gift in the midst of turmoil.

Do You Need Rest?

Do Rebekah’s words speak to your heart? Do you need rest? Leave a comment about how the Different Dream bloggers can pray for you.

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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How to Inspire Families of Kids with Special Needs?

How to Inspire Families of Kids with Special Needs?

How to Inspire Families of Kids with Special Needs?

Guest blogger Kimberly Drew is inspired by the stories of families raising kids with special needs. But she’s not so sure what to do when people say her family inspires them. In today’s guest post she shares her thoughts about how she’s learning to handle the situation.

Inspiration

I just started a new women’s Bible study written by Jennifer Rothschild called Walking by Faith: Lessons Learned in the Dark. I was so intrigued by this particular study, in part, because Jennifer is legally blind. From the first introduction video, I can tell that this study will be sprinkled with bits of wisdom and experience that will have a much more significant impact because of her unique disability. I’m so excited to learn from her and to grow as a person because of her willingness to share her heart and life with her readers. It’s inspiring to watch her take the stage and start speaking with perfect poise and demeanor knowing that she can’t see the audience’s physical response to her message or read their body language for feedback about how she’s doing. She just goes for it, and she is a powerful example of faith in action for me.

If you’re like me, you’ve probably read a lot of inspiring stories about families or people with disabilities. I’m always intrigued by the article that’s shared on Facebook, a clip on the morning talk show, or a book from a mom like me. Why do we gravitate to these stories? I believe to connect. To connect to a community of people who understand what we’re going through and have managed to make something beautiful or newsworthy from their situation. We’ll probably never meet them, share a cup of coffee, or swap phone numbers. But we feel connected to them somehow. It feels good to belong to something inspirational like that.

Have you ever considered that you might be an inspiration to someone else? Maybe that makes you laugh, or tremble! But it’s true. People are watching the way we handle ourselves, the way we love and care for our children, and sometimes seeing us do what we do gives them the strength to keep plugging away at their own situation. I remember when Abbey was little; a mom of a healthy young girl my daughter’s age told me that she didn’t know how I did it. She had this look on her face. It wasn’t pity… it was something different. I’ve seen it a few times since, and I’m sure you know what I’m talking about. The look was inspiration. It humbled me, and I wanted to send her a live video feed of me on an off-morning so she didn’t have any grand ideas of who I really am! However, I accepted the compliment, and I think of it sometimes when I feel like nothing I do makes any difference.

The truth is, we’ll never know this side of eternity what kind of difference we’re making in the world just by caring for our children. You just never know who’s watching you, who might want to read your story, who needs to meet your child and feel the warmth of their smile. Just by going through the motions, you invite others to see beauty, to experience life differently, and to be inspired.

Who Inspires You?

Where do you find inspiration for your special needs parenting journey? Who inspires you? Leave a comment to spread the inspiration love!

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.

Photo Credit: www.freedigitalphotos.net

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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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Called to Special Needs Parenthood

Called to Special Needs Parenthood

Called to Special Needs Parenthood

Photo Credit: cieleke at Star Stock Photos

Guest blogger Maggi Gale is camping out at DifferentDream.com again. Today she relates a story about an incident that showed her how to embrace her calling to special needs parenthood. Maybe her words will help you do the same.

Called to Special Needs Parenthood

Whack!

We had been having breakfast when 2-year-old Lois simply fall off her chair. I could tell by the look on her face that this was a serious injury. Maybe the arm was broken. Again. How I hated these straight-backed wobbly chairs. And these African tile floors could be so unforgiving. I called the doctor on her mobile who told me to go straight to the clinic and pick up a form to take to the hospital requesting an x-ray.

Easier said than done.

We lived on the outskirts of the city because the doctor had advised us to move from the city center as Lois had suffered repeated chest infections, related to her EA/TEF condition. The cleaner air seemed to benefit her a little, but the traffic and poor roads were a terrible problem. We avoided peak traffic times at all costs. However, this time it was inescapable. Lois and I were stuck in mile after mile of bumper-to-bumper traffic over bumpy potholed roads all the way to the clinic as she nursed her broken arm. On arrival at the clinic we were greeted with those immortal words, “Do you have an appointment?”

An appointment?

Oh, how some doctors’ receptionists love bureaucracy. After a deep breath and inward prayer I managed to reply with a fixed smile. “My daughter has broken her arm. Please may I have the form to request an x-ray?” Form held triumphantly in my hand, we climbed back into the Land Rover for the second leg of our journey. As we wove our way to the hospital, dodging overcrowded minibuses and vendors on bikes, I tried to avoid too many bumps which would jog her arm. Finally we arrived in the hospital waiting room, Lois in agony, me all sweat and dust, feeling as if I had already done a day’s work before breakfast!

Just then, an African nun came to sit opposite us.

As I glanced at the nun, her whole morning flashed before my eyes. She would have woken up (as opposed to been woken up by her children), calmly read her Bible, perhaps sipping tea at the same time. She would have enjoyed a wonderful, peaceful, uninterrupted time of prayer with God. Yes, her face suggested that. As my imagination soared and outlined more details, a wave of pure envy swept over me. Why was my life so complicated? Wasn’t it enough that Lois was EA/TEF? Did she have to break her arm twice in 2 years, too?

Why wasn’t I a nun?

Later I related the story of my inappropriate envy to a friend. He laughed and replied, “Yes, and you would have been content as a nun for about 2 weeks.” Exactly. Whatever the actual truth of the nun’s morning routines, God had, in His wisdom, called her to that life, not me. He had called me to motherhood of 2 daughters, one of whom was EA/TEF with a tendency to break bones.  Life with an EA/TEF daughter can be complicated. It seems as though my path is as bumpy and hazardous as the African roads at peak traffic time. But this is the path I am called to, so, bumps or no bumps…

…onward I go.

Have You Embraced Special Needs Parenthood?

Have you embraced special needs parenthood? If so, what enabled you to do so? If not, what holds you back? What are you struggling with? Leave a comment.

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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Just Enough Hope for Special Needs Parenting

Just Enough Hope for Special Needs Parenting

Just Enough Hope for Special Needs Parenting

This past winter was a doozy.

Long.
Snowy.
Cold.
Dark.

But eventually, the daylight hours started increasing. The cardinals and wrens began singing in the morning. The robins came back. The temperatures started rising in late February, and so did my spirits. Until I caught a cold.

Sore throat.
Plugged ears.
Red nose.
Bad cough.

This winter reminded me of my first winter as a new mom. We lived much further north and west of where we do now. So even the mild winters were long and cold, the daylight hours significantly fewer than where we live now. Not only that, but my elementary students passed colds and viruses on to me all winter long. I passed them on to our baby with upper respiratory issues relate to his congenital birth anomaly. By mid-March, ten months into motherhood, I was at my wit’s end.

Stir crazy.
Exhausted.
Hopeless.
Done in.

I can’t remember how I made it to spring that year, though much of the credit goes to my husband’s patience and compassion, the encouragement of friends, and the trust my students lavished upon their cranky, tired teacher. Many years later, when dear friends lost twin boys at the sixth month in utero in late February, God brought the memory of my late winter despair to mind. Every time it niggled at me, I sent a card or encouraging note to the family.

Thinking of you.
Praying for you.
Missing your babies.
Hanging on for you when you can’t.

In late March, the mother was back in church. She thanked me for the cards, and I asked her how she was doing. “It’s hard,” she said as tears filled her eyes. “It’s so hard.”

To read the rest of this post, go to the Not Alone website.

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. The first book in her cozy mystery series, See Jane Run!, features people with disabilities and will be released in June of 2022.

Author Jolene Philo

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A Blue Jay, Hope, & Special Needs Parenting

A Blue Jay, Hope, & Special Needs Parenting

A Blue Jay, Hope, & Special Needs Parenting

Today it’s my pleasure to introduce guest blogger Sarah Broady. Like so many who are ready for an end to this long winter, Sarah is watching for signs of spring. When she sees a blue jay outside the window, she finds not only a sign of spring, but also hope for her special needs parenting journey.

Pondering the Blue Jay: Living Like Spring in the Landscape of Winter

Every morning, I sit on the couch that faces our bay window drinking my tea and reading, or “computering” for a while as I look outside. This morning the scenery outside catches my attention and captivates my thoughts. Even though I think spring has officially begun, it still looks quite wintery outside with dead trees empty of their leaves, and grass that only has patches of green here and there. It’s a cloudy day, so there is no bright sun breaking through the bleak landscape. It’s kind of a sad sight, depressing even.

As I watch, I see our friend has returned—a beautiful blue jay who flits about and perches on a brittle limb of one of the small trees in the yard in the middle of the driveway. I think to myself he must be lonely because I never see him with any other feathered friends. Yet here he is, seemingly joyful to have the tree all to himself. It is a welcome sight to see such beauty in the midst of ugly. Let’s be honest—who has framed pictures of dead nature proudly adorning their walls? No, we like to hang the pretty of nature—the colorful array of a mountain range at the height of the fall season, or bright sunny days in summer. Not many would opt for the dreary, cold, grey scene of winter—at least not without some pretty snowfall glistening in the cold day’s sun.

For quite some time now, I have been considering the word “hope.” The word intrigues me. We think of the word as something that we very much want to happen, but have no certainties about whether or not what we hope for comes true. The word “hope” in the Bible can mostly be used to mean “wait.” I personally “hope” in the return of Jesus—that is, I eagerly wait for it. I believe it IS a certainty, a guarantee, and that is why I have “hope.”

And so I consider the blue jay once more. This small, seemingly insignificant creature grants me something of which I am in need daily: hope. His presence is the promise of spring that is coming. The trees will not always be so bare, and the grass will not always look so withered, nor the contrast of his bright blue feathers so stark against the greys and browns behind him. The leaves will return, the flowers will blossom, the grass will grow greener, and in time, more feathered friends will fill the branches. We are promised seasons in Scripture. Seasons in nature, seasons of life. Even though the sky is grey, and the trees seem lifeless, there really is life taking place beyond what we can see. There is sun beyond the clouds. There is life within the trees getting ready to break forth. There is hope. Not the kind of hope that is desired but unsure. The kind that is a certain promise of the coming newness spring will bring.

Living life in the midst of what sometimes feels like a never-ending winter, we are promised “spring,” the newness of life. The deadness of this life will be done away with, and our world will be recreated with the stamp of a Hope that never dies. It is not yet here, but it is coming. In fact, there are many recreations along the way that remind us of this very hope. Funny that a simple blue jay can bring about such thoughts. How thankful I am for his spray of color this morning. I hope to see him again tomorrow.

What signs remind you that spring is coming and that give you hope for your special needs journey. Leave a comment!

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.

Photo Credit: Ron Bird at www.freedigitalphotos.net

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Sarah Broady and her husband have three boys. Their second son is autistic. Sarah is an autism advocate and has spoken to state capitol committees to secure better services on behalf of families living with autism. Her greatest joy comes in being an encouragement to other parents who are walking the same road she is walking. She is a writer and blogs about their life raising a son with autism as they hope and delight in God at Hope in Autism. Sarah writes for Not Alone Special Needs Parenting. She is also writing a book that gives hope in Jesus on the special needs path. She speaks at Christian-related special needs events to reach parents on a more personal level. You can contact Sarah through her blog or by email at sarah@spacelots.com.

Author Jolene Philo

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