Anniversaries of Life and Special Needs Loss, Pt. 2

Anniversaries of Life and Special Needs Loss, Pt. 2

by | Jun 5, 2014 | Different Dream, Grief, Spiritual Support

Anniversaries of Life and Special Needs Loss, Pt. 2

Guest blogger Kimberly Drew and her family recently celebrated daughter Abbey’s birthday. In Part 1 of her series about anniversaries of special needs loss and life, Kimberly described the arrival of their daughter. Today she explains how she learned to cope with the memories of Abbey’s birth and when it’s okay to grieve.

Anniversaries of Life and Loss:
It’s Okay to Feel a Little Sad

Abbey just had a birthday. I can’t believe she’s twelve years old! It feels like just yesterday that she came. That’s what happens when memories are strong and vivid. They were mostly painful memories, and it wasn’t until about two weeks after she was born that I let my heart finally rejoice that I had a little girl. We’d been told a few hours after she was born that there was a good chance she would not survive her traumatic delivery at all.

She truly is a miracle.

A couple of months after we brought her home I started seeing a counselor. I was having horrible nightmares on a very regular basis. If I let myself go to sleep, I would wake up drenched in sweat with a rapid heart rate and having just watched my daughter being resuscitated in my sleep. The paleness of her face, and the sound of her labored efforts to breathe are seared into my mind forever.

I was diagnosed shortly afterward with post-traumatic stress disorder (PTSD).

I thought that PTSD was something that only soldiers got from being in war. I didn’t even know what it was. When the counselor went down the list of symptoms, I had every single one. I was completely shocked. I didn’t tell anyone except for my husband for years. I don’t know why… I think I thought I should have been able to handle it?

She did live, after all, so what was my problem?

Time is a great revealer, and now I know exactly what my problem was. I’m happy to say that only once in a great while do I have those kinds of nightmares. I know the triggers and when stress starts to build, I have tools to help me cope.

But in the meantime, many birthdays have come.

Blowing out the birthday candles is a celebration of Abbey’s life. All day long we look at her and each other and thank God for her. I think of all the miracles that have happened in her life and body throughout the years, and I’m so humbled by God’s goodness to teach us how to be her parents and how to grieve the loss of the dream of a healthy baby. Like this website and Jolene’s books share, we found the beauty of new and different dreams for Abbey and for ourselves.

Her birthday is an anniversary.

It is an anniversary of her life. We spend about 98% of our day in complete gratitude and unfiltered joy. But for about 2%, when we are finally alone, my husband and I just hold each other and often cry. It’s okay to acknowledge that her birth was also a loss. Our pain does not go unnoticed by God, and anyone who has been through something even remotely similar knows what I’m talking about. Our greatest joy holds hands with our greatest trial.

It’s okay to be a little sad too.

How About You?

Have you had an experience similar to Kimberly’s? Leave a comment about how you’ve learned to cope with your grief and/or PTSD? Or do you have questions about how to find help? Leave those comments, too. Kimberly and Jolene will try to answer them or point you to resources.

Part 1

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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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Anniversaries of Life and Special Needs Loss, Pt. 1

Anniversaries of Life and Special Needs Loss, Pt. 1

by | Jun 4, 2014 | Different Dream, Grief, Spiritual Support

Anniversaries of Life and Special Needs Loss, Pt. 1

  Photo Source: mrsiraphol at www.freedigitalphotos.net

Guest blogger Kimberly Drew and her family recently celebrated daughter Abbey’s birthday. In her two-part series, which begins today, Kimberly describes the arrival of their daughter. She candidly describes the diagnoses of Abbey’s numerous conditions and how special needs loss altered their lives and their parenting experience.

Anniversaries of Life and Loss:
It’s Okay to Feel a Little Sad

Twelve years ago, I was twenty-two years old and about to have my first baby. My husband and I were surprised to find out we were pregnant after only being married for a year. I was in my fifth year of college at Taylor University in Upland, Indiana and had just begun student teaching. Over the next nine months we did all the things that a first-time parent does. While our budget shrank, my waistline and anticipation grew exponentially. We took labor classes, toured the hospital, had three baby showers, and then we waited. We waited, and waited, and waited.

When the day finally came, to say we were excited is an understatement.

We were naively ready to be parents to a perfect baby girl. Then it happened. Or I guess I should say, then it didn’t happen. Labor would not progress. After eighteen hours of induced labor and three and a half hours of pushing, my doctor appeared and in an urgent frenzy, started yelling at everyone. Papers flew, nurses ran into each other, and a neonatal team descended on us like seagulls on an unattended picnic at the beach.

I remember throwing my head back and submitting my soul to God.

In an instant, Abbey arrived. For the rest of my life, I will never forget the silence. The team began working on her right away. No one congratulated me. There was not a single smile in the room. The hush of death hovered over us, and my tender years were not able to process what was happening. I just kept asking why she wasn’t crying.

Why wasn’t she crying??

No one would answer me. No one could say anything to me for the next twenty-four hours that made any sense at all. They lost count of how many times she was resuscitated that night. The fact that Abbey pulled through still amazes us.  We know that God spared her life. People from many states and countries across the world were praying fervently for her healing.

We’re forever grateful.

After almost a month in the NICU she came home and our life changed forever. The next few months revealed bilateral hearing loss and a seizure disorder.  The next few years revealed microcephaly from brain damage and cerebral palsy among a host of other problems.  At the age of twenty-two I became the mother of a disabled child.  I thought I was just becoming a mother.

I had no idea how different my life was about to become.

Abbey’s birthday was April 10th. Every year we celebrate with candles, cake, friends, and family, and a ridiculous number of photos. Every year I lay in bed that night and remember her birth and how the course of my life was inalterably changed.

How Did You Learn of Your Child’s Special Needs Diagnosis?

Does Kimberly’s story bring back memories of learning of your child’s special needs? Share your story in the comment box if you like. Then come back tomorrow to hear more about what the anniversary of life and loss looks like in Kimberly’s family in Part 2 of the series.

Anniversaries of Life and Special Needs: Part 2

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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Do Kids Experience Grief about their Special Needs?

Do Kids Experience Grief about their Special Needs?

by | May 15, 2014 | Different Dream, Grief, Spiritual Support

Do Kids Experience Grief about their Special Needs?

 Photo Credit: David Castillo Dominici at www.freedigitalphoto.net

Have you ever wondered if children experience grief about their special needs? Today’s guest blogger, Maggi Gale, has an astounding post about her three-year-old daughter’s need to grieve the scars caused by her very early corrective surgery (She was born with EA/TEF). Grab a tissue and prepare for a fascinating read!

We Are All Different and It’s Okay

My two daughters, Phoebe and Lois, were sitting to the table eating their dinner. Lois, 3-years-old, was wearing a halter top; the less clothes the better in tropical Africa! She suddenly stretched up her right arm and felt her scar with her left hand. We had always been amazed at how clever the surgeon had been to cut under her arm and operate on her esophagus from there. It was a neat, but nevertheless, big scar.

Suddenly 3 years of pent-up frustration and pain welled up as Lois sobbed, “Why am I not like Phoebe?”  As I scooped her up and held her, she poured out her heart. Her sobs came from deep within. Despite the fact that we never mentioned her scar, it was there, and unbeknownst to us, she associated it with her health problems, and the ways in which she felt different. Instinctively I knew it was crucial that she express herself, and that I acknowledge what she was trying to say through her limited vocabulary.

Yes, she was different.
And no, it wasn’t fair.
I agreed that we are all different: I was wearing glasses, other people had trouble walking, some people couldn’t hear…

We are all different, but she certainly had struggles that most children didn’t have. As she lay down to sleep that night, I smiled as she told herself these truths again: We’re all different and it’s okay.

A few days later a friend gave me a book–I’m Special by Jen Green which is based on the same idea.  She drank in the words and the thoughts behind them. The book is still on her shelf to this day.

Months later, an educational psychologist pointed out that Lois had needed to grieve. She sensed loss in what she saw that others had, but she didn’t have: an ability to swallow easily and sturdy enough health to attend a preschool–even if she could not identify exactly what it was. It would never have helped her to be told that others were worse off, or to in any way to belittle her sense of loss. It needed to be acknowledged in order for her to deal with it.

Fast forward just five years, and I realized that we’d actually we’d moved on light years. Lois had been swimming at her friend Ali’s house.  In the car on the way home she said, “Mummy, Ali has scars on his body.” She went on to describe the scars on his torso.

“Oh”, I replied “Did you show him your scar?”

“What scar?” she asked in surprise.  I gripped the steering wheel as tears welled up in my eyes.  My daughter wasn’t even aware of her scar!

Looking back, I’m astounded at how much she perceived about herself, and the depth of her feelings, at the age of 3. So…don’t be fooled by your children’s lack of vocabulary–listen to their hearts and you might be surprised by what you hear! I know I was.

Has Your Child Experienced a Similar Grief?

Thank you, Maggie for sharing Lois’s story and your ideas for supporting a grieving child. Have your children had a similar experience? What helped them cope with their grief? 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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Brokenness and Special Needs: All In Seeds in God’s Garden

Brokenness and Special Needs: All In Seeds in God’s Garden

by | Sep 24, 2013 | Different Dream, Grief, Spiritual Support

Brokenness and Special Needs: All In Seeds in God’s Garden

Brokenness is part of parenting a child with special needs. Guest blogger Stephanie Ballard is here with a poem about how God used the seed of brokenness to grow her faith and reveal the beauty of her son’s life.

Stephanie’s Seeds of Brokenness

I was 22 weeks pregnant with my son Braeden when the high risk doctor that I had been referred to gently took my hand in his and sighed. “I have some distressing news,” he said. The ultrasound had revealed that my unborn son would be born with a serious heart defect, and had a very high risk of having other genetic abnormalities. The doctor was quick to point out various areas of concern on the monitor. “His liver looks enlarged,” he said,” and I think he may be missing a kidney as well.”

“What can we do?” I asked him tearfully, and he began speaking about “quality of life” as he handed me a referral to a pediatric cardiologist.

“I’m so sorry dear,” were his parting words…”good luck to you.”

I was distraught as I left that doctor’s office, the words “quality of life” echoing in my mind in the weeks and months to come. I found the peace I had been seeking when my son was born several months later. When I finally held him in my arms for the first time, his fragile little body pressed against mine, I realized something of the utmost importance. God can bring beauty into our lives through brokenness. Braeden is eight years old today, and I am fond of reminding him that God loves to grow miracles in the midst of impossible circumstances.

Broken

The farmer told his wife one day…
“Well, spring is nearly here
Its time to plant some flowers
On that hilltop that lies near.”
And so he went right to the store
To buy the perfect seeds
Flowers of most every kind
To fit all of his needs.
And then they had to till the ground
Under the noonday sun…
They prepared the perfect field
Then marveled at all they had done.
Flowers would soon bloom here
Yellow…purple…blue
A meadow filled with glory
In every single hue.
And so the farmer held his seeds,
Which cost a pretty penny.
He said, just drop one at a time
As we do not have many.
And soon their chore was near complete
Each seed set in the soil
His wife said, “It’s well worth it,”
This day of work and toil.
And then she nudged her husband, asking.
“Is this seed okay?
It’s cracked right down the middle
Should I plant it anyway?”
“A seed like that won’t grow,” he said
Just throw it to the winds.”
And this is where the story of
The broken seed begins…

The days and weeks passed quickly
The garden, it grew grand
With sunshine and the gentle rains
And life from God’s own hand.
The farmer and his wife were proud
Of what they have achieved
Their garden was perfection
Most everyone agreed.

Meanwhile…
The little seed that they forgot,
Tossed by the farmer’s wife,
Decided that it must now fight
To have a chance at life.
God looked kindly on this seed
And said, in retrospect,
“They deemed you small and broken,
I say, ‘You are perfect.'”
And so the seed mustered its strength
And pushed out of its shell.
“I may be just a seed,” it thought.
“But I have a story to tell!”
And every drop of water
And sun that came its way
Made it that much stronger.
It would be a flower someday.

And then one day, it happened,
Much to the wife’s surprise
As she walked past the meadow
She could not believe her eyes.
The loveliest flower that she’d ever seen
Sat just beyond the trees.
She stopped what she was doing
And dropped down to her knees
“Surely, God is in the place,”
She said as tears fell free,
As only God Himself, could make
A thing of such beauty.

“A miracle it must be,”
She said, raising worn eyes above,
“A reminder of all that can grow
With God’s enduring love.”
And others came to see it, too.
This flower, oh so rare,
Red and gold, and violet.
They could not help but stare.
No one had seen it’s equal,
And no one would again.
A perfect testimony
Of what happens when one says, “I can.”

God looked down from heaven
A smile on His face.
This flower a reminder
Of His everlasting grace.
The petals were a rainbow,
Each color seemed to shine.
“Let those who see you marvel
And know that you are mine.”
Life may bring us heartache,
A trial, storm, or weed.
But God can grow a miracle
From just one broken seed.

But God has chosen the foolish things of the world to confound the wise,
and God has chosen the weak things of the world to shame the things which are strong.
Colossians 1:27

How Is God Growing You?

What seeds of brokenness is God coaxing into beautiful flower in your life and the life of your child. Leave a comment.

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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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Special Needs Parenting: Not the Expected Destination

Special Needs Parenting: Not the Expected Destination

by | Sep 12, 2013 | Different Dream, Grief, Spiritual Support

Special Needs Parenting: Not the Expected Destination

A special needs diagnosis is the beginning of an unexpected journey. Guest blogger Michelle Selent recently heard an analogy that resonated with the journey her family is on. Here are her reflections on what she heard.

Special Needs Parenting: Not the Expected Destination

I heard something recently that was so good I just had to share it with you. I was listening to a sermon and an analogy was shared from a special needs parent. I can’t take credit for this, but I certainly can relate to it. Let me try my best to relay the story.

Imagine yourself planning for a trip. A trip to Italy. You prepare with much excitement. You get every detail set to the best of your ability. Then your travel day arrives and you board your plane, eagerly anticipating your arrival in Italy. As your plane lands and you get off the plane you realize you have actually landed in Holland. You explain to the flight attendant that this is not the destination you set out for. You realize then that there is no going back. It was a one way trip and Holland is where you are. At first it is disappointing. You had certain plans in your mind that you realize now are never going to happen. You can wallow in that unexpected disappointment or you can open your eyes and see the beauty that Holland has to offer.

I think that is how it is with special needs parenting sometimes. Before we adopted our daughters with fetal alcohol syndrome all I had was Italy on the brain. Our new family members were going to be just like our biological children, just a different color ;). Well, when we landed we realized we were not in Italy at all. Then it hits you that you won’t even get to Italy. I really had to mourn my expectations. I had to mourn what I thought would be. But you know what? Holland really is beautiful. My daughters are so very, very precious. They don’t learn or progress the same and they require so much support, but you know what? They have grown and come so far. They went from failure to thrive to thriving. They smile and are happy. They laugh big beautiful gut laughs. They love to play dress up. They can feel and give love. Yes, that has come with years of therapy and specialists and medications and lots and lots of prayer, but you know what? I see the beauty in Holland. Holland isn’t where I planned to be, but you know what? It is full of tulips.

Have you ended up somewhere you did not plan on being? Let me encourage you to examine your surroundings. It may be different, but I am sure it is full of beauty.

Where Are You Going?

If you have an answer to Michelle’s question, leave a comment in the box below. You might discover other people on the same road with 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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Michelle is the mother of two adopted daughters with fetal alcohol syndrome. You can connect with her on Instagram.

Author Jolene Philo

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Confessions of Special Needs Parents

Confessions of Special Needs Parents

by | Jul 30, 2013 | Different Dream, Grief, Spiritual Support

Confessions of Special Needs Parents

Special needs parenting is a combination of joys and hard things. Guest blogger Ellen Stumbo is here today with her confession and the confessions of other special needs parents.

Confessions of a Special Needs Parent:
The Hard Things

Parenting a child with special needs can be a challenge, and often those challenges feel like a strong tidal wave coming at us, threatening to make us lose our balance, to fall, to give up. But we don’t. We never do.

The love for our children compels us to stand strong against the tide crashing against us—the stares, the school system, the medical billing, the ignorance from other people, or the lack of support. And although we stand strong, we get tired, sometimes we are barely keeping our feet planted and we fear the tide will finally defeat us and wash us away. So we reach out and hold each other’s hands because we know together we are stronger, and because we need someone to stand with us. We cannot do this alone. We face challenges. There are hard things about parenting children with special needs.

Social Isolation

We don’t want to be isolated, yet sometimes because of our children’s needs we find ourselves alone. We want friends. We need friends.

Special Needs Parents Feel Like We Are Not Doing Enough

Deep down we often wonder, could I do more? Could I try harder?  Am I really doing all I can do? Sometimes, we have an overwhelming feeling of failing at everything we do because we don’t have enough time or energy to do it all. We feel like we are failing with our kids, we feel like we are failing with the typical siblings, failing at our marriage, failing at keeping a neat home, failing at our jobs.

Siblings

At times, we feel like we are cheating our typical children from having normal childhood experiences. We feel torn, and we fear that our typical children will feel less important or forgotten.

Comparing our Child to Typical Peers

We try not to compare, but sometimes it’s hard not to notice how different our children are compared to their typical peers.

Lack of Communication with our Children

It is hard when you cannot understand your own child because of a speech delay, and even harder when the lack of communication affects other social interactions and the forming of friendships.

Others

It is tiresome when other people throw judgment at us.  It is insulting when people hint they could do better and that our children’s behaviors are a result of poor parenting. The constant battle with schools, doctors, insurance companies, etc., is exhausting. Some people don’t even give our kids a chance.

The Future

We worry about the unknown, what the future holds. What will happen to our kids when we are not around? And how do we let go?

Dealing with the Diagnosis

When we first received our child’s diagnosis, we had to grieve the loss of the child we thought we would have. Once we deal with the diagnosis, we still have to deal with the everyday realities of our children’s needs. We want you to recognize the hard things about parenting a child with special needs, and we hope that someday you will understand what it is like to walk in our shoes. Ultimately, we want you to stand with us, because when you do, you will see that we are courageous, funny, compassionate, resilient, brave, flexible, forgiving, generous, and so full of love. And we want to share that with you too.

What’s the Hardest Thing You Deal With?

Are you a parent of a child with special needs? What is the hardest thing you deal with as you parent your child? Leave a comment below or join the conversation on Facebook where Ellen asked, “The hardest thing about parenting a child with special needs is_____________”

Those responses were an inspiration for this post.

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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Ellen Stumbo is a writer and speaker and the mother of three girls, two with disabilities. To read more of Ellen’s writing, visit her blog at www.EllenStumbo.com.  She can also be found on Twitter and Facebook.

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