More than one-fifth of US households with children have at least one child with special needs. Raising a child with special needs is spiritually, emotionally, mentally, and physically challenging. Parents of these children need encouragement to restore hope and a passion for God in their lives—but the realities of having to be parent, nurse, therapist, and caregiver make it difficult to find the time or initiative to seek encouragement.
Packed with encouragement from parents who understand this complicated balancing act, Refresh is designed to provide just what these parents need. The devotional guides parents to spiritual truths that can be applied to the demands they face every day. It offers perspective and hope through the varying stages and phases families experience, from diagnosis to loss and grief.
Each day's devotional includes a reading from Scripture, as well as stories and testimonies from parents who intimately know the struggle readers face. Their children represent a wide range of special needs, including autism, cerebral palsy, Down syndrome, genetic disorders, chronic illness, and more. Drew and Green show how the truths of God's Word are relevant, regardless of the diagnosis. Their devotional illuminates the unique lessons and perspectives to be gained as a result of raising a child with special needs.
Insightful and powerful, Refresh will help weary parents grow spiritual roots and turn toward the Light that never fades.
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About the Author
Jocelyn Green is an award-winning author of fiction and nonfiction, including The Five Love Languages Military Edition, Faith Deployed, and Wedded to War. She is also the mother of a son with congenital hypothyroidism. Find out more at JocelynGreen.com.
Read an Excerpt
Spiritual Nourishment for Parents of Children with Special Needs
By Kimberly M. Drew, Jocelyn Green
Kregel PublicationsCopyright © 2016 Kimberly M. Drew & Jocelyn Green
All rights reserved.
Uprooted When Life's Landscape Changes
I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord's holy people, to grasp how wide and long and high and deep is the love of Christ.
LIFE IS SHORT, ETERNITY IS LONG
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
2 CORINTHIANS 4:16–18
When Abbey was very little, we moved out of state and started the search for a whole new medical team to treat her developmental delays. At the new pediatrician's office, the doctor looked her over and worked with her muscles. When the words "cerebral palsy" came out of his mouth, I stood there with my own gaping wide open. I had to ask him to repeat himself. In a casual second to him, my world went from "delay" (with the hope of someday catching up) to a lifelong diagnosis of disability. I had to pull over on the way home to cry.
I had lost the mother-daughter relationship and future I had dreamed about since the day they told me, "It's a girl." Predictions of the future, paired with memories of my own childhood as a little girl, flooded my heart with grief. As the extent of our daughter's disabilities unfolded, I realized I would never hear the sound of a little girl humming and singing through the house. I would never watch her skip or play teatime with her dolls. All the moments that I longed for in this life would never happen the way I had hoped.
At some point in the grief process, I realized I had put my hope in the wrong future, and that's why it hurt so badly. It was why I could not heal and move on. The Lord began to whisper eternity over my soul with verses like 2 Corinthians 4:16–18. To accept Christ is to accept the gospel; to live in Christ is to live in the light of it. Because of what Christ has done for us on the cross, we hold on to the treasured promise that heaven makes all things right. Heaven restores things to the way they were meant to be. There are no diagnoses or disabilities in heaven.
Revelation 21:3–4 says about this new heaven,
I heard a loud voice from the throne saying, "Look! God's dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. 'He will wipe every tear from their eyes. There will be no more death' or mourning or crying or pain, for the old order of things has passed away."
Psalm 119:49–50 exclaims, "Remember your word to your servant, in which you have made me hope. This is my comfort in my affliction, that your promise gives me life" (ESV). God's Word gives us hope. This is our comfort, and the promises contained in his Word give us life.
Years ago, my mom started speaking the phrase "Life is short, eternity is long" over me. When this refrain becomes part of our souls, it helps transfer our affections and gaze from this life on earth to eternity with Christ. James 4:14 reminds us, "Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes." This moment we are in right now is not the end of the story. An eternal perspective gives great hope.
Father, help me to fix my eyes on you and not on my child's diagnosis. Help me to trust you not only for this life but for eternity. Restore to me the joy of my salvation, and with it the great hope of heaven. In Jesus's name, amen.
1. How have you handled your child's diagnosis?
2. What hope and comfort do you find in the promises of heaven with Christ?
3. What can you do to foster this truth in your life?
MORE THAN WE CAN HANDLE
My soul is weary with sorrow; strengthen me according to your word.
When Nichole was born with Down syndrome, the doctor told Ellen and Andy Stumbo that he was sorry. "Don't say you are sorry," Ellen chastised him. "Our baby is exactly who she is meant to be. God does not make mistakes."
"You religious people handle things better," the doctor replied.
As a pastor's wife, Ellen told herself she ought to handle it just fine. But Ellen didn't want her baby. She was afraid of an unknown future full of limitations, and she mourned the loss of the baby she had expected to welcome. "And I was afraid that my family in Mexico would believe the very thoughts I wrestled with that were prevalent in our culture. That I had done something wrong and was getting what I deserved. Or that Nichole would never be whole. Although I knew it was not true, those lies would suck at my heart, like leeches, and I painfully would pull them out."
It would be easier if she died, Ellen thought. The pain and sadness I have is engulfing me, Lord! I don't know how I will ever be able to enjoy life again! I don't want this child!
Her wish for her baby to die terrified her. Sadness, worry, and anger plagued her so intensely that it was a relief to Andy when he left home for work. Finally one night, Ellen asked him, "The Bible says that God does not give us more than we can handle, right?"
He paused. "[First Corinthians 10:13] is often taken out of context. That verse refers to temptation. God will not give us more temptation than we can handle."
"Well, does God give us more than we can handle when it comes to ... life?" Ellen asked.
"Yes, honey. If we could handle it, we would not need God. But when we are given more than we can handle, it is then, and only then, that we realize how much we need him."
This is more than I can handle, Lord, Ellen prayed that night. I need you to step in.
If you too feel overwhelmed right now, whether from a diagnosis, or a new test result, or the daily challenges that make up your new normal, then telling yourself you should be able to handle it will not help you. Jesus never said we should manage on our own. He said, "In this world you will have trouble. But take heart! I have overcome the world" (John 16:33). We don't have to be strong enough to conquer it all — Jesus is! And it is his strength, not ours, that we are urged to rely upon throughout the Scriptures:
The Lord is my strength and my shield; my heart trusts in Him, and I am helped. (Ps. 28:7 NASB)
God is our refuge and strength, an ever-present help in trouble. (Ps. 46:1)
I can do all this through him who gives me strength. (Phil. 4:13)
The next time you find yourself saying, "I can't do this," add two words on the end: "without you." You were never meant to live your life without God's strength, his patience, his grace. Your life may be more than you can handle alone, but nothing is too difficult for God.
Lord, this is more than I can handle on my own. Fill me with your strength. Grant me your love for my child. Thank you that you don't make mistakes — help me truly believe it! In Jesus's name, amen.
1. What feels like more than you can handle right now?
2. What is one area you're trying to control but can't?
3. Identify a time when God's strength really carried you through.
OUT OF THE PIT
He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand.
Ellen Stumbo's hands shook as she hung up the phone. The liver condition detected in her baby, the doctor had called to say, could be fatal. "Oh dear Lord. I asked you to take my baby away, and now you are letting me have my way. My baby is going to die."
Guilt and fear knocked Ellen to the floor and unleashed a torrent of sobs. "I faced the dark hole I had been living in since Nichole's birth," she wrote on her blog. "It was deep, murky, and tight. It had become a prison. Life happened around me, yet I was stuck. My tears had been so abundant I would soon be covered in my own grief. And it was my despair over what I saw as unfair that would cause me to drown — not my baby, and not her diagnosis. The unending tears blinded me."
Who among us has not spent time in a similar "hole" of our own? In Genesis we read the story of Joseph being thrown into the pit by his brothers. "The pit was empty; there was no water in it" (Gen. 37:24 NKJV). Despair is also empty, dark, isolating, and void of nourishment. Job suffered so greatly that his wife suggested he "curse God and die!" (Job 2:9).
Though the prophet Elijah fled to a mountaintop after his exhausting fight with the prophets of Baal, he found himself in an emotional and spiritual pit. "'I have had enough, Lord,' he said. 'Take my life'" (1 Kings 19:4). But that wasn't God's plan. Twice he sent an angel to bring food and drink to Elijah, saying, "Get up and eat, for the journey is too much for you" (v. 7).
The journey is too much for you. The Lord knows this. He did not ridicule or minimize Elijah's desperation, and he doesn't do that to us, either. May we cry to God for help, as David did: "Do not let the floodwaters engulf me or the depths swallow me up or the pit close its mouth over me" (Ps. 69:15).
For God is mighty to save (Ps. 40:2). Though he allows us to experience the pit, and we must work through our grief, he does not desire that we dwell there permanently.
That day Ellen learned Nichole could die, she searched her heart. "Could I live knowing I held back from loving my baby because she was not what I had expected, not what I wanted?" She pulled herself to her knees, stretched out her arms to God and cried, "'I choose love, Lord! From this day on, with everything that is within me, I choose love!' And God pulled me out of the hole, and held me in his arms. Because he had chosen love for me too."
That was several years ago. While Ellen remembers that scare as the moment God pulled her up out of her pit, her life has not been grief-free ever since. She loves Nichole fiercely. Still, grief rolls in and out like an irregular tide, with new medical complications, difficult IEP meetings, missed milestones, and even memories. In her memoir Sun Shine Down, Gillian Marchenko shares that when her daughter with Down syndrome was twenty-one months old, "Grief packed up his bags and told me he was going hitchhiking across the country, though he promised to send postcards."
No matter how many times we slip into grief, God does not scold us for being there. Gently, lovingly, he offers his hand. His message to Elijah he says to us as well: I know the journey is too much for you. Let me help you up and nourish you with living water.
Lord, help me learn how to grieve my losses in healthy ways. Thank you that I don't need to hide my grief from you. Help me up out of the pit, and give me a firm place to stand. In Jesus's name, amen.
1. When was the last time you felt stuck in a pit?
2. What most helped you to climb out?
3. Next time you slip into a pit, how do you hope to handle it?
THROUGH WATERS DEEP
But now, this is what the Lord says — he who created you, Jacob, he who formed you, Israel: "Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze."
Almost immediately after being discharged from the NICU, Abbey began to receive early intervention services. Suddenly complete strangers were in my home, touching my baby and telling me how to care for her, five days a week. These were in addition to all the specialists and physicians who were now on our speed dial. It was a dramatically different routine than I'd expected. Into the calendar went many appointments: OT, PT, speech therapy, developmental therapist, doctors, and clinics. Out went family time, friend time, me time, and church time. By the time Abbey reached the age of three, I thought there was a good chance I would never have the gift of a friend, the blessing of a healthy marriage, or the joy of other children.
I couldn't have been more wrong.
In those trials and early years, I learned so much about the character of God, my sinful nature, and the hope I have in him. When our routines and our child's disabilities threaten us, we have to hold on to the promises in Scripture passages such as Isaiah 43:1–2. We will pass through the waters; the waters are unavoidable, but we are never alone. God promises that with him by our side, they will not destroy us.
Sometimes these waters show us the depth of our own sinful nature. As I found my marriage struggling with our new normal, I turned to other friendships for comfort and assurance. Ryan turned to his new job and spent many hours beyond what was necessary away from home in order to gain a sense of control over our out-of-control life. A deep wedge was forming between us. When family and circumstances opened our eyes to our situation, we knew that God could use this to refine us. We turned to Isaiah 48:10–11 as a verse for our marriage: "See, I have refined you, though not as silver; I have tested you in the furnace of affliction. For my own sake, for my own sake, I do this. How can I let myself be defamed? I will not yield my glory to another."
We need to know we're not alone. We need to allow what we are going through to refine us, and yet it's also exciting to learn new things about our relationship with the living God, for his glory. Jared Buckley, whose daughter Fayth has Down syndrome, explains on his blog:
We have learned that through the power of Jesus Christ, there is nothing we cannot handle. We have given our worries, concerns, fears, anxieties, and struggles over to Jesus and have come out victorious (Romans 8:34–39). We live our life encouraged, hopeful, peaceful, and joyful because our life is not our own and we live by faith in Jesus Christ (Galatians 2:20). We are now co-heirs to Christ's throne and live in His kingdom and presence everyday (Romans 8:17).
There is nothing that can take away our victory through Jesus. This victory has given us the greatest peace in our parenting a special needs child. When all things happen, we come back to the fact that Jesus still reigns and He has and will always love us unconditionally. [The] result is encouragement.
Sometimes the new normal is excruciatingly difficult, yes, but it can also be amazingly beautiful. There will be days when it feels like it's all you can do to keep your head above water. But not only is God with you, he also will lead you through until you're safe on the other side.
Dear Jesus, I praise you that you promise I don't have to do this alone. Use this new normal to show me the depth of your love, to refine my character, and to teach me about yours. In Jesus's name, amen.
1. What areas of your new normal are difficult to manage?
2. In what ways can you see God refining you through this process?
3. How has your refining process shown you new discoveries about God's character?
NOT READY TO CELEBRATE
How long must I wrestle with my thoughts and day after day have sorrow in my heart?
I'm not ready for this, Laura Slezak thought as she pushed her three-year-old son in the stroller beneath the Florida sun. Beside her, her husband, Craig, pushed their one-year-old daughter Ava, who was recently diagnosed with Angelman syndrome, a complex genetic disorder that includes delayed development, intellectual disability, severe speech impairment, problems with movement and balance, and seizures. Surrounding them were other parents and children with Angelman's, and supportive friends and family. They were participating in the national walk for the Angelman Syndrome Foundation.
Laura was overwhelmed at the sight of so many older kids with the syndrome all in one place. "One woman told me that she couldn't believe I was even at the walk, because she had refused to participate soon after her child had been diagnosed," Laura recalled. "That was so reassuring to me, because I was totally hating being at the walk at that point and wished I hadn't gone. I needed to know that other moms probably felt the same way at first and that I'm not crazy or a bad mom for being depressed."
Another dad told Laura the first two years were the hardest for him, but that it did get better. It was exactly what she needed to hear. "So, it's OK if I'm not OK with this for another year, even if everyone else thinks that's a ridiculously long time," Laura said.
Even the most steadfast believers are allowed to own their sorrow. David, a man after God's own heart (1 Sam. 13:14), expressed grief and dismay in his psalms. Most of his laments reveal that he felt God had deliberately withdrawn his loving protection:
How long, Lord? Will you forget me forever? How long will you hide your face from me? How long must I wrestle with my thoughts and day after day have sorrow in my heart? (Ps. 13:1–2)
My tears have been my food day and night, while people say to me all day long, "Where is your God?" (Ps. 42:3)
I am worn out calling for help; my throat is parched. My eyes fail, looking for my God. (Ps. 69:3)
When Jacob saw his son Joseph's bloodied and shredded robe, he assumed Joseph was dead. "All his sons and daughters came to comfort him, but he refused to be comforted. 'No,' he said, 'I will continue to mourn until I join my son in the grave.' So his father wept for him" (Gen. 37:35, emphasis added). If this hero of the faith did not give his grief a tight deadline, you don't need to either.
Excerpted from Refresh by Kimberly M. Drew, Jocelyn Green. Copyright © 2016 Kimberly M. Drew & Jocelyn Green. Excerpted by permission of Kregel Publications.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
1 Uprooted: When Life's Landscape Changes
Life Is Short, Eternity Is Long 19
More Than We Can Handle 22
Out of the Pit 25
Through Waters Deep 28
Not Ready to Celebrate 31
Year of Fear 37
Unwelcome Changes 43
The Interpreter 46
2 Sowing Seeds: Cultivating Truth and Faith
Trust Despite Troubles 51
Searching for Peace 54
Lifeline Theology 57
Longing for Transformation 60
The Sacrifice of Praise 63
Remembering Matters 66
It's Not Our Story 69
Ugly Turned Beautiful 72
Who Knows? 75
When We Can't Fix It 78
3 Pulling Weeds: Digging Out That Which Entangles
Do You Love Me? 83
Good-Bye, Guilt! 86
The Reins of Sin 89
Saying No to Idolatry 92
When Churches Hurt 95
Sibling Rivalry 101
Mind Games 104
Confronting My Friends-and Myself 107
I Love Horses More Than You 110
4 Parched: When Hope Withers
Waiting Out the Storm 115
"I Can't Keep Him Alive" 118
The Hard Work of Healing 121
Asking for More 124
Crushed Spirit 127
Loss and the Hope of Heaven 130
Huddle Up 133
The Towel 136
From Darkness into Light 139
What Do We Do with God? 142
5 Drenched: Nourishing the Soul
A Family Who Worships 147
Speak Life 150
Lack of Sleep Is a Form of Torture 153
Strength for the Fight 156
Held Together 159
Contagious Joy 162
Compassionate Father 165
Sibling Therapy 168
Deep Caregiver Love 174
6 Sunlit: Turning Toward the Son
Eyes Wide Open 179
Secret Keeper 182
Unknown Protections 185
Facing the Future 188
Children of God 191
The Ride of Your Life 194
Sovereign Moments 197
What's in a Name? 200
Medical Debt, Spiritual Debt 203
Heavenly Dwelling 206
7 Pruned: When Pain Produces Fruit
Gloriously Dependent 211
He Hates Being Cleaned 214
Can We Have a Better Marriage? 217
Pride Killer 220
Keep Walking 226
The Joy of Surrender 229
Don't Panic! 232
Rescued Hearts 235
8 Branching Out: Touching Others' Lives Through the Journey
Speak Up 241
Friends in the Fire 244
Dusty Doorways 247
Waves of Kindness 250
Words That Matter 253
The Gift of Presence 256
Buddy System 259
Jill's House 262
Share Your Story 265
Knowing Jesus Personally 268
About the Authors 281
Most Helpful Customer Reviews
This book is aptly titled, for it will indeed Refresh parents of children with special needs. I love the devotional format and the anecdotes and testimonies from Kimberly Drew and other parents who share their experiences, struggles, and challenges. Drew and Green present Biblical truth and encouragement, giving hope and strength to weary parents. Each devotional ends with a prayer and a few practical questions that give the reader ways to apply that day's discussion. Refresh is an instantaneous, 24/7 support group that can sit on a bedside table--or anywhere it is needed! Most importantly, parents will be introduced to Jesus, or reminded of his presence on their journey. I recommend this book not only for those who parent these special children but for their friends, as the insights will equip others to come alongside in support. I also suggest Refresh as an excellent resource for children's ministers and churches. Give one or several as gifts this season! Disclosure of Material Connection: I received a copy of this book free from Kregel Publications for a blog tour. I was not required to write a positive review. The opinions I have expressed are my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”
I don't have a child with special needs, but I have a number of friends who do. I picked up Refresh because I wanted to know how to pray for them, and to understand their journeys better. Each devotional includes a piece of a family's journey through special needs with encouragement from Scripture. I sat down to read one devotional and ended up reading 10. I was captivated by the authentic sharing of stories and challenged by the teaching of Scripture. Green and Drew, through their own stories and interviews with dozens of special needs parents, have created a thorough look into the spiritual life of families with special needs. Starting with diagnosis and through the lifelong journey of health concerns and accompanying loneliness, heartache, frustration, and faith challenges, Refresh offers a deep nourishment for weary families and caretakers that can only come from the work of God's Spirit through Scripture. Each devotional includes a story, a connection to Scripture, a prayer, and questions to dig deeper. If you or someone you love cares for a special needs child of any age, pick up a copy of Refresh.