Lord, I Don’t Understand… But I Trust You

Lord, I Don’t Understand… But I Trust You

Lord, I Don’t Understand… But I Trust You

 

“Lord, I don’t understand… but I trust you.” Have you ever told God you don’t understand the challenges he puts in the life of your child with disabilities? Have you ever wondered how to move from not understanding Him to trusting Him? In this post guest blogger Sandy Ramsey-Trayvick offers an answer that may surprise you and give you hope.

As special needs parents, we can experience so many circumstances with our kids that we didn’t expect or don’t understand. When the diagnosis comes; or when the prognosis is difficult; or when we’re being bombarded with bad news, it can be so easy to succumb to disappointment. We don’t understand why God allowed this or why He didn’t do that. We’re faced with disappointment again when we expect God to show up in a certain way at a certain time or do a certain thing, and He doesn’t. We’re disappointed and confused and we don’t understand.

We may wrestle with how to reconcile our unmet expectations and desires with our beliefs about what a faithful, trustworthy God would do—should do—in those situations. If we’re not careful, we can begin to quietly—in our hearts—correlate our circumstances to the character of God. We start to wonder whether or not God is faithful or good or… something else. Rather than taking our disappointments and questions directly to the Lord, we may suppress or hide those feelings. Meanwhile, as our disappointments and questions remain unaddressed, our hearts are quietly hardening towards God.

Some of us may have been taught to not question God. That to do so was dishonoring to Him or indicative of a lack of faith or maturity. As a result, we allow our unspoken questions and deep disappointments to lead our hearts and trust away from God rather than us leading those same questions and disappointments to the only One who can answer them.

The truth is that God not only allows our questions, He welcomes them. God wants to hear our questions and disappointments. (He already knows we have them.) Sharing them with Him invites a dialogue—a conversation.

Over time, honest conversation builds an authentic, intimate relationship. It invites friendship with God, which leads to trust. We learn to trust Him because we’ve spent time with Him and we know Him. Not because our circumstances are perfect or because we understand or even like everything He’s doing, but because we know Him.

I heard someone say that, when God doesn’t answer her prayers or show up in the way that she’d hoped, she’s learned to start telling herself, “God must be up to something.” This perspective, she admitted, was born out of her relationship with God. From spending time talking and listening to the Lord. Getting to know Him, His character, His ways, and His love for her.

What if we adopted that same mindset? A perspective that says, “When God doesn’t do what I’d hoped or expected, rather than doubting or losing hope, I choose to believe that God must be up to something. Something bigger. Something better. Something that I don’t know to ask Him for yet.” This would mean choosing to trust Him in spite of things we don’t understand. It means believing that, despite my disappointment, He is still for me. It means choosing to not make assumptions about His motives that don’t line up with His character.

It’s a mindset that comes from being in a relationship with Him.

It enables us to make the leap from “Lord, I don’t understand” to “but I trust You.”

Relationship.

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Sandy and her husband are parents to three young adult children. Their son was diagnosed with multiple disabilities 24 years ago after a devastating illness as a toddler. Following her son’s diagnosis, Sandy quit her job to become his full-time caregiver and advocate.

Sandy is currently a Certified Professional Coach. Her focus is to empower special needs parents who are feeling weary by helping them to renew their hope and strength and reactivate their joy.

You can learn more about Sandy and her work at www.UNDisabledLIVES.org. You can also reach her at Sandy@UNDisabledLIVES.org.

Author Jolene Philo

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A Valentine’s Day Love Story

A Valentine’s Day Love Story

A Valentine’s Day Love Story

A Valentine’s Day love story, if present day culture is to be believed, is all about candlelit dinners, chocolates, diamonds, and declarations of undying devotion. This Valentine’s Day love story is about loving a little boy who lives with anxiety, ADHD, and high-functioning autism just as he is.

“Grammy,” said our 8-year-old grandson Tad when he entered our kitchen. “Someone did something terrible in the bathroom. Come see.”

His little sister followed us into the bathroom where thick rivulets of hand soap ran down the mirror above the sink. The sister denied having had anything to do with it. Another look at the miserable expression on my grandson’s face, and I sent her out of the room.

“Did you do this, Tad?”

“Yes,” he said with tears in his eyes.

“Why did you lie?”

He began to cry. “Because I didn’t want you to get mad at me. Are you mad at me Grammy?”

“I’m not mad at you, Tad.” I hugged him. He hugged back. “Just disappointed. Mostly because you lied, and it’s hard to trust someone who lies. You know that, right?”

He nodded.

“Let’s clean this up together.”

We talked while mopping hand soap off of the counter, the faucet, the sides of the vanity cabinet, and the wall.

“What made you do it?” I asked.

“My mind quit working, and I couldn’t stop.”

“Did you know what you were doing was wrong?”

His lip trembled. “Yes, but the naughty part of me took over.”

I took a few seconds to decide what to say. “Everybody, even grownups, has to fight against choosing naughty things. The only human who chose the right way every time was Jesus. He did it because he was completely human and also completely God. You’re not Jesus and neither am I. We’re humans who choose to be naughty sometimes, and Jesus still loves us.”

To read the rest of A Valentine’s Day Love Story, visit the Hope Anew website.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. 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 Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

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Disability Ministry Goes After the One

Disability Ministry Goes After the One

Disability Ministry Goes After the One

Disability ministry goes after the one according to guest blogger Mark Arnold. In this post he explains how we can be like Jesus and do it too.

Sometimes I get asked why churches should make an effort to reach those with special or additional needs, when it means balancing their needs against those of the rest of the group. I always say the same thing.

Jesus told us to go after the one.

In the parable of the Good Shepherd, Jesus told of a shepherd leaving 99 sheep to find the one that was lost. Here’s the version from Luke 15:4-7.

“If a man has a hundred sheep and one of them gets lost, what will he do? Won’t he leave the ninety-nine others in the wilderness and go to search for the one that is lost until he finds it? And when he has found it, he will joyfully carry it home on his shoulders. When he arrives, he will call together his friends and neighbors, saying, ‘Rejoice with me because I have found my lost sheep.’ ” (New Living Translation)

Jesus uses this parable to explain how heaven rejoices more over one person who repents and comes to faith than for ninety-nine people who have never strayed. I like to think it can represent some children and young people with special or additional needs too.

They can sometimes be marginalized, overlooked, and “lost” to the rest of the church. They are sometimes sent away and excluded by the very people who should love them and care for them. I’ve heard stories of children with special or additional needs being told not to come back next week, or their parents told “this is not a special needs church”. I’ve even heard of children being excluded because “they might be a health and safety risk.”

But Jesus said to go after the one.

Disability ministry goes after the one by valuing the one: Too often, children and young people with special or additional needs are looked down on as of little value in our churches. The Good Shepherd valued the one sheep that had wandered off. In a way he valued the one more than the ninety-nine because he left them to search for the one. We need to value them, prioritize them, love them as Jesus does.

Jesus said to go after the one.

Disability ministry goes after the one by investing time and effort: The Good Shepherd scoured the wilderness looking for the one. We need to invest the time and effort needed to reach the children and young people we are journeying with. We can’t expect them to adapt, to change, to find the way themselves. The lost sheep needed the Good Shepherd to find it where it was and bring it home. Children and young people with special or additional needs require their leaders to do that too.

Jesus said to go after the one.

Disability ministry goes after the one by rejoicing in and with them: The Good Shepherd brought the lost sheep home and rejoiced because it had been saved. All too frequently, we don’t think about the spiritual welfare of children with special or additional needs. Their time in our groups becomes babysitting. But heaven rejoices for each person who is saved. We should do all we can to bring children and young people into God’s presence to show them their spiritual home and rejoice with them when they make little steps of faith.

Jesus said to go after the one. Will you?

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Photo by Hiu Yan Chelsia Choi on Unsplash.

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Mark Arnold is the Additional Needs Ministry Director at Urban Saints, a leading national Christian children’s and youth organization. He is co-founder of the Additional Needs Alliance, a national and international advocate for children and young people with additional needs or disabilities. Mark is a Churches for All and Living Fully Network partner, a member of the Council for Disabled Children and the European Disability Network. He writes an additional needs column for Premier Youth and Children’s Work (YCW) magazine and blogs at The Additional Needs Blogfather. He is father to James, who has autism spectrum condition, associated learning disability, and epilepsy. To find out more about how Mark’s work can help you, contact him at: marnold@urbansaints.org or @Mark_J_Arnold

Author Jolene Philo

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I Didn’t Want to Learn Hard Caregiving Lessons, but Now I’m Grateful

I Didn’t Want to Learn Hard Caregiving Lessons, but Now I’m Grateful

I Didn’t Want to Learn Hard Caregiving Lessons, but Now I’m Grateful

I didn’t want to learn hard caregiving lessons in 2023. Mainly because I’m a big fan of easy. Hard? Not so much. Yet here I am waiting for 2023 to end—believe me, I’m ready to put it behind me—and at the same time embracing the hard lessons I’m about to share with you as precious gifts.

My entire life, literally since I was two years old, has revolved around caregiving. Therefore I assumed I was prepared for the challenges our family faced after my mother was diagnosed with dementia in 2008. That assumption proved correct until January of 2023 when Mom entered hospice care. Over the six months leading to her departure from this earth, advocating for her was all encompassing. I didn’t want, nor did I have time to learn hard caregiving lessons. With each passing day I became more grateful for how they drew and are still drawing me closer to God. And so, I want to share them with you.

  1. The why of caregiver grief is the same, though the who and what may be different. All grief is a response to loss. Young parents grieve the loss of children gone too soon or the losses related to their child’s disability. Growing children grieve what they don’t experience because their parents live with disabilities or because their parents were lost to disease. Adult children grieve as their elderly parents lose their independence, personality, and function. The universality of loss among caregivers can make us more empathetic toward all caregivers.

To read the rest of I Didn’t Want to Learn Hard Caregiving Lessons, visit the Key Ministry website.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. 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 Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023.

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An Unexpected Christmas Gift

An Unexpected Christmas Gift

An Unexpected Christmas Gift

An unexpected Christmas gift was given to guest blogger Sandy Ramsey-Trayvick and her family more than 2 decades ago. Today she shares her reaction to the gift shortly after it was given and how she views it now.

My son Myles got sick on December 10, 1999. My family had attended a Christmas party four days before. I have memories and pictures from that party of my son giggling with excitement as he raced back and forth across the room, practicing his newly developing walking skills. He was healthy and happy. Our family was excited and looking forward to enjoying the holiday season. But our little boy suddenly became very ill. Instead of planning for Christmas, my husband and I found ourselves in the emergency room receiving the news that our 13-month-old had contracted strep pneumococcal meningitis and was in a coma.

I remember sitting next to his hospital bed in the pediatric intensive care unit signing the photo Christmas cards that featured my three little ones all dressed up in their holiday best. Sending photo cards of my kids to family and friends had become one of my holiday traditions. This particular year, as I signed each card, I prayed for God to awaken my baby boy in time for Christmas. I pleaded with the Lord but His answer was no. The Christmas of 1999 was the saddest I’ve experienced.

I asked the Lord for just one gift and didn’t receive it.

There have been a lot of Christmases since then and, thankfully, my son has been awake and at home for all of them. Through that long illness and the special needs journey that has followed, the Lord has blessed our family with gifts I hadn’t thought to ask for as I sat in that hospital room all those years ago.

God began revealing His first gift to us shortly after Myles was hospitalized.

Prior to that long hospital stay, my husband and I held inaccurate ideas about God and His ways. In the midst of some of our most difficult circumstances with Myles, God gave us the gift of truly getting to know Him. We experienced Him as Teacher, Comforter, Protector, Advocate, and Waymaker. Prior to that hospital experience, we had heard about God and His ways, but He gave us the gift of knowing and seeing Him for ourselves. In the almost 25 years since my son’s initial illness, we’ve continued to know God more intimately as we’ve walked with Him through both joyful and painful experiences.

Through this special needs journey, the Lord has also given me the gift of knowing my true identity.

Becoming a special needs mom challenged all the ways I saw myself. My old chosen identity had been tied primarily to my performance and accomplishments—but it didn’t fit with my new life as a special needs mom. As I struggled for a sense of significance in this role, the Lord walked me through His Word to teach me who He says I am. He taught me that my significance—my worth and value—have always been in Christ. I didn’t need to choose an identity because He had already chosen one for me, one that would remain unchanged by new roles or unforeseen circumstances.

As I reflect back over the past two decades and more, I’m relishing an unexpected Christmas gift of remembrance—the ability to look back and recall all that God has done in and through my family’s special needs life. He has continued to give.

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.

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Sandy and her husband are parents to three young adult children. Their son was diagnosed with multiple disabilities 24 years ago after a devastating illness as a toddler. Following her son’s diagnosis, Sandy quit her job to become his full-time caregiver and advocate.

Sandy is currently a Certified Professional Coach. Her focus is to empower special needs parents who are feeling weary by helping them to renew their hope and strength and reactivate their joy.

You can learn more about Sandy and her work at www.UNDisabledLIVES.org. You can also reach her at Sandy@UNDisabledLIVES.org.

Author Jolene Philo

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Surrendering our Children with Disabilities to God

Surrendering our Children with Disabilities to God

Surrendering our Children with Disabilities to God

Surrendering our children with disabilities to God can be challenging. It’s also crucial to future spiritual development in us and our children. Guest blogger Kelly Simpson explains what’s involved in our surrender and how it can draw us closer to God.

Having a child with special needs or a disability often feels like a heavy load. I’ll be honest—it feels like a burden when I try to make it through on my own energy and my own will. You can try for years and still feel drained or worn out, filled with doubts and questions like these:

    • What is life supposed to look like now?
    • Will this particular opportunity that we have been waiting for even be an option for us now?
    • I have been working so hard for… How will we make it now?
    • Will our dreams be put on hold because of this condition?
    • How does this diagnosis affect the plans I had for my own life?

You may be past the “why me?” or “why us?” phase but still deal with ever-present anxiety. To you I want to kindly ask a question:

If you think you have it all under control, why is anxiety still a huge presence?

The answer could be that we never really have full control and we were never meant to.

Matthew 11:28-29 says, “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.”

When I surrender to the Maker of the stars, I give Him full control and I receive His true peace.

Matthew 11:29 says that I can also find rest in God. For me, some things have been easy to hand over. I’ve held onto others tightly for years. Once I let go, I wonder why I held on so long. He created the whole world just by speaking and can provide me with peace and rest.

Not surrendering our children with disabilities to God may look like:

    • Replaying thoughts and questions over and over until they become all you can think or talk about
    • Refusing to pray at all or consciously choosing to not pray about certain things

Surrendering our children with disabilities to God may look and feel like:

    • Verbally or mentally handing a situation over to God because you know you have no control of the situation or other people
    • A heavy load lifted off your heart
    • Realizing that God doesn’t promise to make life easier due to surrender, but he does promise to always be at your side
    • A change in outlook even though circumstances don’t change
    • A sense of peace

Recipients of peace:

    • Know they need Jesus during every second of their day
    • Know Jesus will provide for their needs
    • Could feel blessed and know they are along for the ride or journey God has designed for them

Paige Ferrari says this in a devotion she wrote for Grand Canyon University:

Peace is knowing that the Lord of the universe is by your side and resting in that. It’s not just knowing, but it is also living it out. Peace is sitting in comfort and knowing that God is next to your side no matter what. Peace is something that you can’t attain physically because the world is almost always going to be a rocky place.

As Ferrari explains, those who know his peace still live in comfort.

Whatever you’re going through—whether it’s caring for a child with particular needs or wondering if you’ll ever be a parent, I challenge you to surrender every detail and circumstance so that you may live in God’s peace and rest.

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Kelly has lived her whole life in Kentucky. She and her husband, Jeremy, have an almost-four-year-old son, who, born during a deployment, was diagnosed with tracheoesophageal fistula (EA/TEF). She has always felt a calling to serve others and is living the dream as an Army wife, middle school teacher, and now, as an encourager to those who are living a dream different than they had planned.

Author Jolene Philo

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