Is There Any Hope for our Children with Disabilities?

Is There Any Hope for our Children with Disabilities?

by | Oct 23, 2019 | Different Dream, Encouragement, Spiritual Support

Is There Any Hope for our Children with Disabilities?

Is there any hope? Now there’s a question every parent caring for a child with disabilities and special needs ponders. Guest blogger Kimberly Drew is back to point readers to the source of her hope as she and her husband raise two daughters with disabilities.

I keep asking that the God of our Lord Jesus Christ, the glorious Father,
may give you the Spirit of wisdom and revelation, so that you may know him better.
I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you,
the riches of his glorious inheritance in his holy people, and his incomparably great power for us who believe.
Ephesians 1:17-19a (NIV)

I sat in a waiting room of a children’s hospital dedicated to those with special needs. It’s a small hospital, and the waiting room was packed. My daughter Abbey was around 10 at the time, and we were there for a routine appointment. I was irritated about the wait when an ambulance transfer showed up with a little boy confined to a hospital bed. There were feeding tubes, trach tubes, and all kinds of other medical leads coming out of this little guy. His mom walked alongside the paramedics and stayed with her son while he got checked in. She rubbed his forehead and kissed his chee. A nurse suctioned his trach. I looked around the room at all the children with disabilities and their parents and felt hopeless. What are we all doing here? This life is too hard, it’s too painful! What’s the point of it all!?

Is there any hope?

I know I’m not the only parent who has felt that way because I have talked to so many of you who have wrestled with those very thoughts. It’s really important for us to recognize that this pursuit of truth leads to the answers that quiet our soul’s questions. Time in God’s Word is what strengthens our ability to process our unique and sometimes painful experiences. If we are in Christ Jesus, we have a living hope that is not only meant to be known, but to be experienced. Paul prays for the Ephesians to have the eyes of their hearts enlightened so that they may know  (emphasis mine) the hope to which Christ calls us, the riches of our inheritance in Him, and the incomparable power of Christ in our lives.

Psalm 119:114 says this about the Lord: You are my refuge and my shield; I have put my hope in your word.

Sometimes people look at our life and say that it’s really hard. I won’t argue that having two disabled children is sometimes heartbreaking. But is there any hope? The answer is yes! We still have joy and hope. People ask my husband Ryan and me how we handle it the way we do. There’s only one word: Jesus. The work of his Holy Spirit, and the truth of God’s word has changed us from the inside out. 

Jeremiah 29:12-13 says Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. If you are feeling hopeless today, I encourage you to seek God’s Word. Christ is a refuge and shield. This hope, this inheritance, this power of Christ is meant to be known and experienced!

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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 three amazing kids on earth (Abigail, Jayden, 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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Rejoice To Do Good

Rejoice To Do Good

by | Aug 21, 2019 | Different Dream, Encouragement, Spiritual Support

Rejoice To Do Good

Rejoice to do good.

Those words from Ecclesiastes 3:12 have been easy to obey this month with the release of Sharing Love Abundantly in Special Needs Families, which I co-wrote with Dr. Gary Chapman. Yeah, he’s the love languages guy. So I have plenty to rejoice about these days.

But when I was a kid surreptitiously carrying my dad’s urinal to the empty in the church bathroom or feeling the stares of neighbor kids as I wheeled him around the block, the command to rejoice to do good stuck in my craw.

After the birth of our first child, my reaction to the rejoice to be good thing would have been throw my Bible across the room.
If I’d had time to read my Bible.
Which I didn’t thanks to sleep deprivation,
and atypical baby care like pumping breast milk 6 times a day to pour down his feeding tube,
and way too many 240 mile round trips from the remote town where we lived to the doctor’s office.
All of which prevented the throwing of my Bible.
And proves that Romans 8:28 is true.
God does work all things to good for those who love Him and are called according to His purposes.

Back to rejoice to do good thing. My point is this.

Throughout my childhood, when Mom, my siblings, and I cared for Dad we were doing great good. My husband and I also did great good caring for our son during the hard first years of his life. In both situations, we had no idea we were doing good. We were just doing what loving families do–we were taking care of our family members who couldn’t care for themselves.

To read the rest of this post, please visit the Hope Anew website.

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Even the Experts Don’t Know What A Child with Disabilities Will Achieve

Even the Experts Don’t Know What A Child with Disabilities Will Achieve

by | Aug 8, 2019 | Different Dream, Encouragement, Spiritual Support

Even the Experts Don’t Know What A Child with Disabilities Will Achieve

Even the experts don’t know what a child with disabilities will achieve. Guest blogger Kimberly Drew and her husband Ryan continue to watch their youngest daughter with special needs surpass the predictions of wise and well-meaning professionals. Today, Kimberly tells the story of one such event.

Even the Experts…

When Ryan and I were at the beginning stage of adopting our baby with special needs, we were told a lot of different things. Every scan showed something unusual, and we were told “normal” was out of the question for her. We were careful to listen to each doctor and specialist, but we also believed prayer and love can make a difference. 

One of our first shocking experiences came from a resident at the children’s hospital while Ellie, the baby we were adopting, was still in the NICU. Because this was not a planned adoption, we traveled across the country every weekend to see our baby. During the week, her birth grandmother and my parents checked in on her regularly. 

Like any newborn, Ellie slept most of the day. However, she was also heavily medicated because she was going through drug withdrawal. The result was a rarely awake baby who was tube fed. We worked with the pacifier every chance we got, and we kangarooed every minute possible. But there was very little chance to work with her on oral feeding in the NICU, so she came home with a feeding tube that went through the nose. 

During the final weeks of Ellie’s NICU stay, a resident popped in the room to discuss the feeding tube with us. She worked in a clinic with children who have special needs. She was an expert in this area and told us we should consider having a g-tube placed in before Ellie left the hospital. The expert clearly said that “these kids will never….” I was in shock! Why would we do this when we had rarely had a chance to work with her on oral feedings? 

I went to the chapel and sobbed hysterically. Then I came back mad and determined. Even the experts couldn’t stop me from trying.

Ellie was discharged to the care of my parents and her birth grandmother. Thankfully my mother was as mad and determined as I was while we waited for legal approval take our daughter across state lines. Mom’s determination meant that Ellie was off of the nasal tube before we ever took her home!

Ellie’s 3 1/2 now. I will tell you that feeding has been a major issue since day one. With her diagnosis of cerebral palsy, feeding will most likely always be an issue. But, we are determined parents! We continue to consult with several specialist to address her nutritional needs, to try and get her off of the bottle and formula, and onto regular food. 

Our most recent success, which even the experts couldn’t have imagined, came at a pancake house in Cape May, New Jersey. Ellie was fussing for a fork. When I was distracted, she slipped the fork off the table and stabbed a piece of pancake.  I turned around in time to see her putting pancake into her mouth!

I had to stifle a scream so I didn’t scare her. We ignored her, watching furtively as she went back for another bite. I burst into tears of happiness. In the back of my mind, I heard that resident with her “probably nevers” and I laughed to myself. Even the experts don’t know it all.  

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly 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 and her college sweetheart Ryan have four amazing kids on earth (Abigail, Jayden, Cooper, and Ellie), and a baby boy waiting for them in heaven. Their daughters have special needs and are the inspiration behind Kimberly’s desire to write. Kimberly enjoys working with senior high girls in their church’s youth program, scrapbooking, reading, and music. You can visit Kimberly at her website, Promises and Perspective.

Author Jolene Philo

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A New Thing God Is Doing for Abbey

A New Thing God Is Doing for Abbey

by | Jun 26, 2019 | Different Dream, Encouragement, Spiritual Support

A New Thing God Is Doing for Abbey

 Abbey is in the front row, second from the left, surrounded by her many friends.

The new thing God is doing for Abbey, daughter of guest blogger Kimberly Drew, is a source of hope for Abbey, for Kimberly, for their family, for Abbey’s classmates, and for all who read this lovely story. You are advised to get a tissue now. You will need it!

A New Thing God Is Doing for Abbey

I remember lying awake the night before Abbey started high school and just praying over and over again, “Lord, please don’t let them be mean to her.” 

The transition to a public high school was our first experience since preschool not being in a private school for the disabled. I was worried Abbey would be made fun of in her new school. She might not be aware of that, it hurt my heart just to think about it. When a regular school bus with an aide stopped at the end of the driveway we sent her off with tears in our eyes and hope in our hearts. I had no idea what was in store.

I wish I could explain all that has happened over the last two years of school for Abbey. She just finished her sophomore year with a bang. In a school just shy of 1,000 students, the social climate has allowed her to thrive. At the first back-to-school night several students from her self- class came up to meet Abbey’s mom.  

One student with Downs syndrome told me Abbey, who is nonverbal, was one of her best friends. “I totally love her!” she said.

After 15 years, I finally met someone who told me that Abbey was her friend.

This new friend takes a close second place as a new thing to the fact that her teacher and personal aide made their mission: to get Abbey to use the toilet at school instead of a diaper. We had tried training Abbey countless times at home. So had her other schools with no success. But here was a team determined to see her do it. We now have a child who regularly uses the toilet, and occasionally initiates the need to use the bathroom by signing. We have now accomplished a goal that I had previously thought impossible! If you have a teenage child in diapers you know what a big deal this is and how it has changed our lives.

A new thing in third place was the call I got her freshman year about Abbey being frequently late to class. When I assured her teacher that she could probably walk faster, she let me know that it wasn’t her walking pace holding her up. She explained that too many students stopped to say hi and talk to her. So, she not only had a real friend, but also was being acknowledged by her peers in a social setting with the potential to make it embarrassing to talk to a nonverbal student.

A recent show that her class puts on in front of the whole school is the latest new thing. There sat Abbey on a stage surrounded by her neuro-typical peers who had learned sign language for the last song of the show. 

The theme of the show was heros.
They had shirts made up that said “Abbey’s heros.”
With a sign language “A” in the middle of the Superman logo.
Her scarf was blowing off the bottom of the logo in place of a cape. 

These students don’t know about the nights we spent praying in bed.
Or the tears as the bus pulled away that first day.
They don’t know that for Abbey’s parents it was a moment of healing.

I believe in this difficult transition that the Lord had prepared a new thing for us. Where we had experienced failure and social isolation, something was new was about to break out.  Isaiah 43:19  sums it up perfectly,

Behold, I am doing a new thing;
now it springs forth, do you not perceive it?
I will make a way in the wilderness
and rivers in the desert.

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 three amazing kids on earth (Abigail, Jayden, 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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The Difference Between Hope and Expectations for Caregivers

The Difference Between Hope and Expectations for Caregivers

by | Jun 20, 2019 | Different Dream, Encouragement, Spiritual Support

The Difference Between Hope and Expectations for Caregivers

The difference between hope and expectation can be difficult for caregivers to distinguish. Guest blogger Kathy Guzzo shares what experience has taught her about how to tell the difference between them.

When it comes to a loved ones who’s struggling or impaired physically, emotionally or mentally, God can show caregivers the difference between hope and expectations. Expectations of what we want our loved ones to accomplish and how we want them to progress can easily lead to disappointment and despair. On the flip side, to hope is to feel that something will turn out for the best.

Hope gives us something to look forward to and will not lead to disappointment. (Romans 5:5 NLT)

This journey of learning the importance of hoping has been a long one for me. Our son was extremely ill as a toddler. At the age of 7 our daughter began having rapid seizures. Another daughter was diagnosed with a serious chronic illness at age 17. Now, one of our adult children suffers with mental health issues. My father has dementia. Each of these situations brought me down emotionally when I raised my expectations instead of my hopes.

Accepting and Building Hope

Through the daily struggles, tears, fears, the loss of dreams, and questions about the future, I have learned to guard my heart from the positive as well as negative expectations of friends, family, and medical professionals. Daily I must let go of the smallest of expectations. Because when an expectation isn’t met disappointment, pain, stress, frustrations, and sorrows take root in my heart.

God has shown me how hope can remain alive in the bleakest of circumstances. I don’t need to lower or raise my expectations. I need to build up my hope. Hope is a choice. There’ve been many days I haven’t felt hopeful. Without hope it’s easy to lose the drive to persevere through the tough stuff. Often I find myself searching for the smallest victory to get me through the large crisis.

When I begin to remove the expectations and hang on to hope, gratefulness for those small triumphs takes over my heart and mind. 

Some days I feel lonely. When my heart becomes full of hopelessness and broken dreams, I need to remember I don’t have to fight alone. I need to accept that it’s okay to show weakness, to be overwhelmed, to need time away, or to have doubts and fears. Others may not always get what I’m struggling with, but their love, encouragement, support, and faith may be the fuel I need to grasp the lifeline of hope.

Hope isn’t a magic solution, making all the pain, frustrations, and questions go away. It is where joy begins and miracles can happen. It’s a confidence in faith giving us strength to persevere.

Jeremiah 29:11 states “I know the plans I have for you, says the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future.” This promise that hope is always available is the reason, I’m choosing to build upon my hope and not upon my expectations.

 

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Kathy Guzzo and her husband live in Northern Illinois and have 4 adult children. She has a heart to minister to those in need of encouragement. Ten years ago her seventeen-year-old daughter was diagnosed with lupus and Epstein Barr Replication. Another daughter began struggling with depression and OCD in her mid-twenties. Kathy has learned that the role of a parent changes immensely as a chronically ill child becomes an adult. Kathy understands the need for her adult daughters to be able to make their own decisions regarding their health, but the nurturer in her sometimes has a hard time letting go. She desires to direct those with loved ones in the military as well as parents with adult chronically ill children to the peace and hope that God has abundantly available for them.

Author Jolene Philo

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People of Determination: A New Take on Special Needs and Disabilities

People of Determination: A New Take on Special Needs and Disabilities

by | May 16, 2019 | Different Dream, Encouragement, Spiritual Support

People of Determination: A New Take on Special Needs and Disabilities

Over the last 9 years, as we have lived as ex-pats in Abu Dhabi, I have often thought of the words of Alice in Wonderland, “Curiouser and curiouser.”

Yes, Alice, I can relate. Like Wonderland, the United Arab Emirates (U.A.E.) is a place with many curiosities!

One example came in April 2017, when His Highness Sheikh Mohammed bin Rashid Al Maktoum, Prime Minister of the U.A.E. and Ruler of Dubai announced that people with disabilities would be no longer be referred to as having special needs. Instead, they would be given the noble title of People of Determination.

This has prompted much discussion. Does the attribute of determination automatically follow a disability? Or does the attitude we take towards our struggles play a part? One thing is for sure; special needs or disabilities have plenty opportunities to become people of determination, as do their caregivers and families!

My daughter was born with tracheoesophageal fistula (TEF) which meant she was totally unable to swallow.

Her operation at 3 days old was a success, but that does not mean that the following years were free of any pain and suffering associated with her condition. Both for her, and for our family, the condition took its toll in many and varied ways. If anyone is out there who sits with a child through the small hours of the night fighting the debilitating TEF cough, our family can relate. Or if anyone is reading this whose toddler can only manage one liquified teaspoonful of soup every 5 minutes, so that the whole day is reduced to one long, mundane meal, I know what you’re going through.

We all  have our own personal experiences of suffering. But whatever we are going through, this poem by Corrie Ten Boom, a survivor of Ravensbrück concentration camp can help us see life’s big picture:

My life is but a weaving
Between my God and me.
I cannot choose the colors
He weaveth steadily.

Oft’ times He weaveth sorrow;
And I in foolish pride
Forget He sees the upper
And I the underside.

Not ’til the loom is silent
And the shuttles cease to fly
Will God unroll the canvas
And reveal the reason why.

The dark threads are as needful
In the weaver’s skillful hand
As the threads of gold and silver
In the pattern He has planned.

He knows, He loves, He cares;
Nothing this truth can dim.
He gives the very best to those
Who leave the choice to Him.

Who of us would choose to be a person of determination? Probably not many.
But who has been chosen? Perhaps we all have.
Who will accept the challenge to allow God to weave something beautiful through the struggles?

That’s the way to become true people of determination. Let’s do it.

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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