Disability Take Us Deeper

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
— from Oceans (Where Feet May Fail) © Hillsong Music Publishing Australia

I used to stand enthusiastically in church and sing these lyrics without fully realizing what a tremendously radical surrender I was declaring. Then one weekend, while presenting at a women’s retreat, those words hit my mind and heart differently. They hit me rather like a two-by-four, actually. The song changed me and many others in the room.

These women came to the retreat in hopes of finding insight about their personal calling or life purpose. Many were feeling stuck in the mundane routines of parenting or concerns about limitations as they aged. Like any of us, they were finding life and relationships hard. They also felt life was frequently less exciting than they had imagined in their youth that it would be. Some suspected they were doing something wrong because life wasn’t more fulfilling or feeling sufficiently productive.

Jesus, the enemy steals my joy and feeds me lies. I confess to believing that adversity and boredom equate to a lack of purpose or a failure in faith.

Do we really mean it when we ask God to give us a life that matters? When we ask God to show us how strong He is, do we realize that He might use us as His canvas? When we wrestle with the parts of this parenting journey that feel impossible and wonder how long we will be able to hold on to our faith, are we willing to choose trust that we are part of God’s vast and creative Kingdom scheme of things?

Jesus, take me deeper than my feet could ever wander. Wherever you would call me.

Parenting a child with disabilities changes the trajectory of our lives. Followers of Jesus find themselves on a different path of adventure than they would have imagined or even hoped for. We may have aspired to see the power of God and experience growing intimacy with Him. But seldom do we have any idea about what might actually be involved in getting us there.

After the worship set was finished that evening at the retreat, I stepped back to the podium and shared a personal story about how God changed my perspective about the very unexpected and challenging life I was leading as a special needs parent.

My daughter Carly used to struggle with strabismus, an eye focusing and teaming issue. She needed therapies to stimulate her macular vision and prevent her from fixating in her peripheral field which interfered with her depth perception and affected her balance (among many other things). One of her therapies involved wearing “pinhole glasses” and watching high-interest entertainment on television from a specific distance.

Carly’s therapies aimed to bolster the eye-brain connection because doctors understood the problem to be more about her neurology than her anatomy. You might say, the way her eyes functioned were dependent on changing the messages that her mind was giving her body (ocular muscles).

As I watched her wearing those fancy glasses one day, I recognized a metaphor about faith and perspective. Carly’s glasses gave me new perspective about our struggles.

Those glasses limited some aspects of Carly’s vision in order to stretch and strengthen other aspects of her vision. Her brain was learning how to search out and learn new information, perceive differently, and function more effectively. Carly’s life was stretching me to see God’s Kingdom purposes differently. I was developing a Kingdom perspective about our circumstances. I was growing new vision that our situation was God-purposed, God-authored and imperfect, but holy.

Oh my, raising a child with disabilities is so very holy! Jesus, help me let go of needing to see the whole picture and grow a new perspective. I need Your vision and mindset to carry me through circumstances that feel impossible sometimes!

Those song lyrics suggest we are willing to give up absolutely everything—hopes, dreams, comfort, clarity— for the benefit of experiencing a rich and deeply purposed life with God.

WRIM’s Real Talk Connect discussions for family caregivers are based on ten Biblical principles like this one.
Contact us for the Zoom link, the complete list of Bible principles and all the FAQs about Real Talk Connect!

My family—much like your own, I hope—has experienced many new opportunities from our experience with disability. While our family experiences chronic medical issues, mental health difficulties and developmental disabilities, each of us has been drawn into relationships we would not have known otherwise. We may have fewer friends than we had before, but many of our existing relationships are richer than they were before. We have different values now. We have unique perspectives on life, love, and priorities than we had before. We appreciate or cherish many things differently than others around us. Our faith is stronger. Our intimacy with Jesus is a life-giving experience instead of a cozy or intellectual concept.

As 2022 approached, my husband and I were feeling the grip and stings of disability on our life. We had been wondering again about some areas of our lives that feel stuck or senseless. We have had moments of ferocious anger with God and/or Carly’s circumstances. We have felt at our wits end with some of her medical issues and behaviors.

Thankfully, God meets us at the end of our wits. He reminds us of this one key fact:

Life is richer for us because disability has turned our world upside down.

Jesus, with each new day give me a fresh vision of the faith adventure that comes with disability!

“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

Hebrews 12:1-3

Today’s post originally appeared on Key Ministry’s Not Alone Parenting blog and is reprinted with permission.


Lisa Jamieson

Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. She leads a weekly online discussion group welcoming caregivers in families living with disability. Lisa and her husband, Larry, are co-founders of Walk Right In Ministries, a non-profit organization building faith and community with special needs families. They live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome.


We use one Bible principle as the theme for each week’s discussion during Real Talk Connect. Please consider joining us any Tuesday at 2 pm Central! Drop in for richly encouraging connection in a casual setting. Contact us for the Zoom link, the complete list of Bible principles and all the FAQs about Real Talk Connect!

What’s With All the Dandelions?

Dead dandelions have intrigued me for as long as I can remember. But a new layer of inspiration emerged from them for me a few years ago. What is it about a nuisance, worn-out weed that is so fascinating, you may wonder?

For some odd reason, there has always been something mesmerizing about the delicate way those seeds set up on a tender stem like a tiny cloud, vulnerable to the slightest breeze or bump from a bare toe. It doesn’t take much to contaminate an entire lawn, along with neighboring yards near and far, with abundant bursts of yellow dandelions.

Moms receive a yellow handful…then quietly sweep nostalgic tears away with the back of their wrists.

There’s a compulsive part of me that wants to capture those seeds in a garbage bag before they do their contagious, dirty work. Yet, my eyes rest on them for a moment while I consider the mysterious mind of a Creator who must have a sense of humor. This prolific weed triggers such paradoxical reactions from people.

The very young romanticize the pretty yellow flowers. In first grade, a boy named Harry handed me just such a bouquet and asked me to marry him! (The humor is not lost on me that I later married a man name Larry.) Moms receive a yellow handful, no matter how limp, with big smiles then quietly sweep nostalgic tears away with the back of their wrists. On the other hand, if you’re older and the one holding the credit card, those bright golden gems may just represent embarrassment with the neighbors and an expensive trip to the home improvement store for herbicide.

One day a couple of years ago, I was given a very personal perspective about the dandelion. I had spent part of a morning sharing my heart about disability ministry with the staff of a church. They listened. I explained some things. They asked a couple of questions. I answered. I sensed a degree of sympathy in the room but people were pretty quiet.

I walked out wondering whether my message brought any real clarity to the issues or had any empowering influence at all. Had I overwhelmed them? Had my opportunity to foster a vision among leaders been overshadowed again by my personal passions as a parent of a child with special needs?

Maybe you’ve been there. Something about your life experience put a passion in you. But when you talk about it, you wrestle with presenting it in a winsome and compelling way rather than putting people on the defensive or causing them to feel overwhelmed, intimidate, or even offended.

I walk that line all the time.

I wear the hat of an advocate, often speaking on behalf caregivers and families affected by special needs. But I am also one of those caregiving parents. Our youngest child has radically shaped my world views and life course. Such a significant life experience is bound to flavor many of my thoughts, passions, conversations and relationships.

So, what about that room full of church leaders? Had God used our time together for anything of value? I wondered.

“I’m sure that telling your story feels futile sometimes. But let me assure you, it is not lost on anyone.”

Shortly after I stepped out of the room, two pastors from the meeting met me in the hallway. Both had words of encouragement that have stuck with me. And I believe their encouragement was meant for you too. I’m going to share it here and ask that you let yourself receive it.

Please receive it deeply.

I’ll paraphrase. One of the pastors began, “Sometimes you may feel like your message is falling on deaf ears. You may sense apathy or resistance. I’m sure that telling your story feels futile sometimes. But let me assure you, it is not lost on anyone.”

He went on to explain how, during my presentation at the meeting, he had seen a dandelion in his mind’s eye. He sensed that God wanted to encourage me with a comparison. “You may feel like a lot of your dreams and your story are dead or done. But I sense that God is about to blow across all of that with fresh life. Like when a dead dandelion gets carried away in the wind, the seeds of your story are going to blow far and wide with a powerful gust of the Holy Spirit. God is going to use those seeds to bring life to new places. And it’s going to be beautiful!”

This word of encouragement is based in a promise from scripture about the nature of how God works:

“I tell you the truth, unless a kernel of wheat is planted in the soil and dies, it remains alone. But its death will produce many new kernels—a plentiful harvest of new lives.” John 12:24

Oh, friends — let’s pray and trust this to be true!

He said, “The seeds of your story are going to blow far and wide with a powerful gust of the Holy Spirit. God is going to use those seeds to bring life to new places.
And it’s going to be beautiful.”

When we seem to have experienced a total loss or hit a dead end, what seed might be there? What harvest may come? Only the Lord knows. But what an adventure it can be to hang in readiness for the winds of the Holy Spirit to blow across our lives!

Just as Jesus’ death initially seemed like a senseless loss, ultimate purposes were served. I want to affirm and encourage you who are living in patient perseverance. Your situation may often feel invisible, unimportant, or unappreciated by others but it does not go missed by God. He breathes new life out of every place of weakness, brokenness, disappointment, dead dream, and lost hope.

Walk Right In Ministries aims to be a community — though often far-flung in the virtual sense —  where we get to know each other and grow together. We pray for multiplication here. Multiplication of love. Multiplication of faith. Multiplication in any way God wants to bring fruit from the seeds of each individual’s unique story.

There are stories to share and new adventures to be lived as God weaves the intersections of our lives for Divine purposes.

Thank you for pausing with me to watch the clouds part and the deep waters get stopped upstream (check out Joshua 3).

Though we may be stumbling through life sometimes, let’s step out in faith — together.

This article first appeared at LisaJamieson.org in February 2018.


Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community alongside families living with disability.

Your Story Matters

Each of us needs to know that we matter to God.

It is a gift to receive reassurances, now and then, about our value. And it is inspiring to hear from others about how God makes a big Kingdom deal out of our seemingly insignificant personal lives.

As we turn pages to a new year, in seasons of change and transition, or when life feels like a wilderness, each of us appreciates encouragement that our life matters somehow in the broader scheme of things.

I love to read. I don’t get much time for it but various things about reading make a powerful soul-fueler for me. Biographies and autobiographies, in particular, are a favorite genre of mine. I get important encouragement and inspiration from hearing how others have found faith in Jesus, endured adversity, persevered when life was a slog, learned new things, helped others, and had fun along the way.

In her book, Singing in the Dark, award-winning Christian music artist Ginny Owens helps readers understand the background of some incredible songs and she invites us to write our own prayers of worship, lament, and longing.

Ginny has been blind since she was three years old. She intimately understands how our lives write a story. Hers, like each of ours, is a story where joys and sorrows mingle. Hers, like each of ours, finds it places of resonance where someone recognizes a connection and finds themselves encouraged by something about Ginny’s experiences. How could she possibly have known as a young girl that God would give her a platform to lead hundreds of thousands of people around the world through darkness to see the Light of Christ?

Few of us can imagine that kind of impact will come from just living our lives.

RELATED: What is the parable of your life?

I am mother to three grown daughters. Our youngest, Carly, is 23 years old but remains entirely dependent on others for her care. All day. And almost all night long. My story has become integrally woven with hers. Together, our stories are even more integrally woven with God’s.

When I read Ginny’s book last year, I was inspired to start writing poetry again as part of my daily worship. Although I wrote several songs as a child and teen, I hadn’t written prose or lyrics for decades. It was refreshing to me to experience this prayerful process in a new season.

One of those poems came easily. It emerged from my passion for sharing life together with others based on the simplicity of following Jesus into the world in whatever circumstances we find ourselves living.

I’ll Follow You With My Story
by Lisa Jamieson

You put me in a family
Chosen to leave Your mark
But something has derailed me
Now confused, I’m in the dark

I’ve stumbled time and time again
Looking for more love
Disappointed by a world of hurt
Left only to look above

I tried so hard to look for you
Resented the absence of your touch
The world dealt me a blessing 
Of each one’s little, You made much

In the harsh and weary days and nights
My soul has languished low 
Yet now I’m growing confident
That a story You still sow

You are the Story Maker
My faith and purpose lifted
Not by my efforts or earning 
But by You simply gifted

As my tale is woven
My eyes catch Your vision
When Your cross was raised, and earth was split
My happy ending given

With each new day I’m strengthened
By no deed of my own
But simply as I stumble 
Within Your arms I’ve grown

The enemy may taunt me
Tension will remain
Life’s bitter cup will tempt me
I will wait for release from pain

All degree of patience 
Will surely bring reward
As all delay is purposed 
Confirmed and graced by Sword 

I see the pace of healing now
Your ever-present hand
I’ll follow You with my story
Into the hungry land

Never in my wildest dreams did I imagine that I would one day be a special needs mom, let alone an advocate and pastor, working and doing life alongside families living with disability.

“You don’t always get to choose your circumstances, but you do get to choose the story your life tells.”

GINNY OWENS

Today’s culture seems fascinated with story. But there’s an essential distinction to recognize. We are part of God’s story. His story is first. Our story within His is what gives our story its real value. Our story within His story is what packs ours with power and Kingdom-sized fruit.

It matters Who we’re following when we go out into the world with ourselves. Because the ultimate Spirit coming across in our message must be Love. Oh! How challenging it can be to move myself out of the way and let Love lead!

When I ask God, “break my heart for what breaks Yours,” (lyric from the Hosanna! Song) He changes my heart. He changes the motivations and directions through which my personal story unfolds.

PLAYLIST IDEA: Hosanna! (Hillsong UNITED version)

When Jesus said, “Come, follow Me, and I will make you fishers of men,” (Matthew 4:19), he was essentially saying, “Let me make a new kind of person out of you. I’ll show you how to be moved by LOVE. I’ll teach you how to bring My love to every other life You encounter.”

Oh, God, make it so!

Oswald Chambers says in My Utmost of His Highest (October 18 devotion), “Our Lord told us how our love for Him is to exhibit itself when He asked, ‘Do you love Me?’ (John 21:17). And then He said, ‘Feed My sheep.’ In effect, He said, ‘Identify yourself with My interests in other people,’ not, ‘Identify Me with your interests in other people.’”

Yes, friend, your story matters so very much — to many — and it is power in God’s hand. Follow Jesus into the world with it!

“The Goal is not for us to go out and make sure that the whole world knows who we are and what we do. The goal is to do what He’s called us to do in the place and the moment where we are.”

GINNY OWENS

GET GINNY’s BOOK AND MUSIC: Singing in the Dark book and accompanying music EP

WEAR THE MESSAGE WITH US! Your Story Matters – follow Jesus into the world with it

PLAYLIST IDEA: Follow You (Leeland with Brandon Heath)


Lisa Jamieson

Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community alongside families living with disability.


Jesus Makes Much of Our Little at Christmas

Are you experiencing some underlying exhaustion while preparing to make joyful new Christmas memories?

Larry and I love the Christmas season! Yet we are coming into festivities with some battle fatigue and frayed nerves from parenting our daughter with disabilities. We have been short on respite for months while sleep, behavior, and health issues have also been challenging.

A recent doctor appointment offered yet another affirming but sigh-triggering report. Carly’s specialist kindly said, “You guys know just what to do and you do a really good job it. Unfortunately, this is a very complicated condition and there are few effective ways to treat it. The methods we would typically try will not be an option for Carly because of her developmental issues and limited communication abilities.” Fortunately, this physician also had some new suggestions to try in hopes of bringing us all some relief. We’re working the process.

In the meantime, we will very gladly push through weariness for the benefits this festive family season brings.

Such can be the life when parenting a child with complex health issues or developmental disabilities. Parents can find themselves dealing with a lot of trial-and-error, feeling very inadequate to help. Sometimes, we simply have very little to offer our big situations.

We need God to multiply our efforts and the fruit of those efforts the way he did for Jesus and his disciples!

That evening the disciples came to Jesus and said, “This is a remote place, and it’s already getting late. Send the crowds away so they can go to the villages and buy food for themselves.”
But Jesus said, “That isn’t necessary—you feed them.”
“But we have only five loaves of bread and two fish!” they answered. 
“Bring them here,” he said. Then he told the people to sit down on the grass. Jesus took the five loaves and two fish, looked up toward heaven, and blessed them. Then, breaking the loaves into pieces, he gave the bread to the disciples, who distributed it to the people. They all ate as much as they wanted, and afterward, the disciples picked up twelve baskets of leftovers. About 5,000 men were fed that day, in addition to all the women and children!
Matthew 14:15-21

This passage isn’t just about the multiplication of food. It is about God multiplying the limited physical and emotional resources Jesus had at hand.

The placement of this story in Matthew’s fourteenth chapter is interesting. It reports one of Jesus’ most well-known miracles, but it immediately follows a significant moment in Jesus personal life. It is a moment of deep grief, and it can easily get lost. Yet it carries a helpful and inspiring message for us who have been called by God to care for others when we ourselves feel weak or depleted. 

“As soon as Jesus heard the news (about John the Baptist’s death), he left in a boat to a remote area to be alone. But the crowds heard where he was headed and followed on foot from many towns. Jesus saw the huge crowd as he stepped from the boat, and he had compassion on them and healed their sick.”
Matthew 14:13-14

Jesus wanted to be by himself. He had lost a dear friend and cousin. He likely felt somewhat responsible for John’s death too. Grief is exhausting. Possibly He needed rest. He may have wanted to find a safe space to express his raw emotions. Surely, He would also pray.

Despite Jesus’ desire to get away from the crowds, He tapped into two things that empowered Him to serve beyond himself:

God’s Indwelling Power
and
Compassion

Jesus was often motivated by compassion (Matthew 15:32, Mark 6:34, Luke 7:13). We can ask God to give us a vision to care for others that is moved by compassion too. We also have the Holy Spirit in us to equip us for every good work (2 Timothy 3:17).

“For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin. Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.” 
Hebrews 4:14-16

When the many needs of our families and a busy holiday season are pressing in like a “huge crowd,” we may desperately want to set some boundaries, find rest, even grieve some disappointments. Periods of separation in a quiet place are fair, appropriate and necessary. Jesus frequently modeled boundaries and rest. But He also shows us there will be times to engage with the needs of others, even when it is very hard. Even when we may rather be somewhere else.

And He will supply.

The God of compassion — the One who fills all things with Himself (Ephesians 4:10) — will fill you with His comfort and mercy to extend to those in your care.

He will make much of your little.

For I can do everything through Christ, who gives me strength. And this same God who takes care of me will supply all your needs from his glorious riches, which have been given to us in Christ Jesus.
Philippians 4:13, 19

RELATED: A Prayer for Minimized Losses and Multiplied Gains


Lisa Jamieson

Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families.


Guest Post: Not Yet

The waiting room.

We have all been there. Most of life is waiting for the next thing, the next season, the next phase.

The waiting room is sterile, awkward, and a place of palpable fear.

For those of us who are suffering, waiting is incredibly painful.

We are waiting for a cure. Waiting for rescue. 

Copyright: nanobey

As we wait, we massage the heartache of disappointment from dashed dreams. We try to convince ourselves that it will be okay — that is, until another salt-tipped dagger stabs our resilience.

Some of us are okay with waiting. But MOST of us are asking why, when, and how?

Why didn’t God answer my prayers for my deliverance or my loved one’s healing from a diagnosis? 

When will this agony of daily grief be over?

How long, O Lord?

I struggle with chronic suffering. I live in circumstances that cannot be fixed by intellect, hard work, or service to the church. I am the mother of a disabled daughter. I am the grieving daughter who lost her mother to a slow death from metastatic cancer.

I have wrestled with the God I chose to follow at age 7. I accepted Jesus as my Lord and Savior with the vigor of child-like faith. But suffering has caused me to question this faith. 

My childhood faith was black and white.

My adult faith is grey.

My childhood faith was the easy proclamation of “Jesus loves me.”

My adult faith is accepting “Though He slay me, I will trust in Him.” 

My childhood faith was about receiving.

My adult faith is about letting go of the most tightly held parts of my heart.

As a child, I was focused on Jesus’ hands. He healed the blind with his touch and he stilled the storms with a wave of his hand. With such a miraculous God, trust and obey was the assumed cadence.

But as an adult, as trials have heaped more questions than answers, I am focused on Jesus’ heart. I want to understand his purpose when he suffered on the cross. Because now I feel nailed to my own cross. And I need someone else to carry it for me. Especially in the trial of unanswered prayer, I am fighting to trust and obey. 

The call to trust and obey does not change from childhood to adulthood. But as adults, we just have more doubts about whether God is trustworthy. We become suspicious that He may not know all of our needs. Does He really know us personally? Does He really have our best interests at heart? 

The world is certainly filled with enough evil that it may seem God is hands-off and uncaring. We may see his “NO” stamped on every gravestone and stack of medical bills. There are even passages in Scripture that can cause us to doubt God’s love. But when we view Scripture as a whole from Genesis to Revelation, we see our story in the context of a greater one.

When we read the Bible to understand the giver and not the gifts, our filter changes. 

We see God’s heartbreak when his creation rebels against Him. We see God’s loving-kindness in providing for complainers in the wilderness. We see God’s tenderness to those who even killed him. We see God’s justice when evil will no longer win. We see God’s mercy in how he pursues us in our rebellion.

Through this lens, we are more aware of our need for rescue, and we stand in awe of a trustworthy God. As our minds are transformed, our emotions are also sanctified by these truths. But during this transformation, we still need to learn how to reconcile unanswered prayer.

We are tempted to believe that God’s final answer is No.

But in reality, His answer is just not yet.

It is not yet time for physical healing. It is not yet time for deliverance from the salty dagger. God is asking us to hold onto hope for the finale. And while we wait, He calls us to hold onto Him. For His grace is sufficient. 

Finding comfort in the end of the story is what fuels us to go on to the next chapter.

When our timeline ends at death, suffering seems purposeless.

But when our timeline extends into eternity, suffering produces hope. 

For the Christian, being told “not yet” is an act of love. “Not yet” is the gentle but firm hand on our shoulder as we try to cross a busy street. “Not yet” is the hand that wipes our tears when we get a disappointing rejection. “Not yet” is the hope of rescue we have in chronic suffering. Like a mother who dandles her child on her knee. Like a father who disciplines the child he loves. As a parent, God cares more about our character than our comfort. It is God’s loving-kindness in “not yet” that draws us to repentance. He is an intentional Creator that calls us to our customized crosses. But He does not leave us hopeless. God promises to restore decay and death for His children in eternity. But how does this truth change our daily hope?

Our daily cross-carrying is the secret to palpating Calvary for it solidifies our hope in our Savior.

Our good Savior rescues us from our inadequacy and carries us — with our crosses and all. We learn to hope in the Lord, instead of hoping in rescue from our circumstance. We are comforted by the sovereignty of God even in the darkest experiences of our lives. One day in heaven, we will thank Him for telling us “not yet” for we shall see how “yes” would have caused us to love ourselves too much. We will thank him for sparing us from a shallow gospel. 

When we understand these truths, the waiting will be less suffocating. In fact, the waiting room can even be a place of rest.

We may not have all of the answers, but we know Who holds them. Let us gather in the waiting room, each with our own chronic ailments and circumstances that are impenetrable to medication and expert advice. Let us keep our eyes focused on Jesus. He is the author of our stories and the perfecter of our faith especially in trial. Let us wait with expectancy for this deliverance in eternity. Let us encourage one another when we receive the disappointing news of “not yet.” And when it is time for our names to be called, and our waiting is over, let us run to our trustworthy Savior. For our Heavenly Father will be standing at the door, welcoming his children home. And the reunion will be sweeter because of the wait.

It will happen. Just not yet.

“Yet what we suffer now is nothing compared to the glory he will reveal to us later. For all creation is waiting eagerly for that future day when God will reveal who his children really are. Against its will, all creation was subjected to God’s curse. But with eager hope, the creation looks forward to the day when it will join God’s children in glorious freedom from death and decay. For we know that all creation has been groaning as in the pains of childbirth right up to the present time. And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us. We were given this hope when we were saved.” 

Romans 8:18-24

Rachelle Keng is a physician practicing Obstetrics & Gynecology in Charlottesville, Virginia, where she lives with her husband Michael and their two daughters. She cares deeply for people and has a passion for writing about her reflections on life and faith. Rachelle’s oldest daughter has Angelman Syndrome. Her experiences as a special needs mom are often the inspiration for her writing.

Respite Rhythms (Part 2): How Much is Enough?

This post is part of an ongoing conversation here at the blog about the 8 Habits of Caregivers with a Robust Support System. We have been revisiting each of the habits with stories and tips on each one. Again today, we’ve been focusing specifically on Habit #6: Find your pace for an adequate rhythm of respite.

The goal of developing an adequate respite rhythm is to maintain reasonable health and well-being. A looming question then is:

How much respite is enough respite?  

Unfortunately, the intensity of caregiving required of some parents and family caregivers doesn’t allow for anything close to the ideal lifestyle we need or hope to enjoy. But some reasonable degree of rest and refreshment must be achieved. It’s a matter of physical, emotional, spiritual, and relational health for the caregiver as well as quality of life for a family and the one needing the aid of others.

Not every activity or respite strategy brings equal amounts of refreshment. And there is no quantifiable formula that equates to enough. I have a personal story that may serve to bring some perspective as you figure out your own unique and personalized rhythm. But before I share the story, allow me to encourage you to enjoy some experimenting. Managing respite is a skill to be honed. It’s a learning process that benefits from some trial-and-error in several key areas of life.

Create a list of activities that feel, to any degree, replenishing. Keep it handy (maybe a note in your phone) so you can add new ideas at any time. Consider asking your loved ones if they have noticed any specific activities that seem to energize you. Their answers may surprise you or enlighten your future choices.

Ask other family caregivers what would be on their lists too.

Don’t let tight finances keep you from discovering a creative approach. Just the other day my friend posted a photo on social media demonstrating how to set up a romantic tailgate picnic in the back of your care. That’s now on my To DO list!

We have the option to pace ourselves for the long-haul or to live our days in tension, fear of running out of steam, outright panic, at risk of injury or headed toward burnout. This requires some self-awareness and taking a close, honest look at our own areas of strength, limitation and vulnerability — accepting that each one of us is a combination of those.

Pay attention to what is really triggering your stress. If you simply lump all of your overwhelm into a single bucket called “stress,” you may not get to the root reason underlying your fatigue or anxiety.Stress builds for such a variety of reasons: lack of sleep, repressed grief, feeling unheard, control issues, lack of boundaries, perfectionism, and difficulty trusting God.

Pay attention to what is really triggering your stress.

We respond differently to people and situations when we are rested. Be intentional about noticing how you react to your responsibilities — emotionally and behaviorally — during the hours or days before to getting a break. Then pay equally close attention to how you react — internally and externally — during the hours and days after you return from a break. Taking an opportunity to step away brings perspective and allows for a reset.

When it comes to getting breaks from caregiving responsibilities, we often have to plan ahead and then hold our expectations loosely at our house. We try to make plans for breaks with some degree of regularity whether that respite looks like a nap in the middle of the day, time alone to organize thoughts, exercise to decompress, a few hours away for a haircut and errands, a lunch date, spontaneous or planned intimacy in the marriage bed, an overnight getaway, or a vacation.

Each of us needs enough time alone. We also need enough time as a couple, enough time with each of our children, and enough time as a family together. As our adult children have moved into independent lives, that family time is an extra gift but well worth praying for and being creative about.

A note about intimacy: Some couples need to experience sexual intimacy twice a week to maintain satisfying connection. Another couple may find that monthly is adequate for them. Marriage in a caregiving family will likely require many compromises and generous amounts of creativity.

Many years ago, I was away at a weekend scrapbooking retreat with friends. Many of those women were avid scrapbookers who spent a certain amount of time throughout the year working on their projects. For me, it was a once-a-year opportunity. I really needed the time with friends. But I desperately wanted time to sit in my own thoughts for a while too looking at pictures and being super-efficient about creating my albums. Finding my rhythm for a satisfying weekend was tricky.

Those women were creating such fun pages of memories. By the end of the weekend, they would finish 15 or 20 gorgeously detailed pages. Though I was both inspired, I chose another approach — fast and cheap!

Because efficiency is always my tendency and this was such rare time for me after Carly was born, I would go into the weekend hoping to finish at least one entire book filled with 40 pages or more. One year I completed two full books for my daughter Alex’s keepsakes — one book from birth to elementary school and one book reflecting her middle school years. I was on a mission!

The other ladies sometimes teased me for being so driven. And I’m sure I was prideful about it sometimes. I also got stuck at times, stalling out of my hyper-efficient rhythm. I would lean back in my chair and whine in frustration for all to hear. Oh, the grace those dear women had for me!

One day I expressed frustration that I wasn’t staying on pace with my productivity goals. A dear friend across the room called out the perfect words to get me going again. She said, “Remember Lisa, done is better than perfect!”

Everyone had a good laugh. Meanwhile, that was a precious reminder and encouragement to me. She understood. I didn’t have the luxury of getting too bogged down in details or too caught up in creative ideas (even though I absolutely love creativity and details). But the life I’ve been given has shifted my values and shown me I can be very happy with leaning into different priorities.

So, I pulled myself back up to my cutting table and got back to work producing at least four pages an hour through the rest of the weekend.

That phrase became a cheerful motto for future scrapbooking weekends. It also became a very helpful mindset when applied to life and other projects over the years. Most importantly, it has applied to taking breaks from caregiving. Larry and I have had to adapt too many romantic getaway plans to count over the years. But never once have we regretted pressing on with revisions and getting the break anyway, even if it seemed quite inferior from the original dream.

So, how much respite is enough respite?

When it comes to finding our respite rhythms, some is better than none, and DONE is better than perfect.

Philippians 4:11-13
I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through Christ who gives me strength.

RELATED: Seven Ways to Energize & Refresh Your Special Needs Family

RELATED: Best Practices of Refreshed Special Needs Moms

WATCH: Flourishing Families with Matt Mooney.

RELATED: Can Caregivers Expect Something Out-of-this-World?

Watch for the final instalment in this 3-part mini-series coming next week — Respite Rhythms (Part 3): Pace Yourself! We’ve got a bunch of practical pacing tips coming so visit the blog again next week. We’d love to hear ideas from you too. Share them what’s been working for you in the comments or contact us privately.


Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families.

8 Truths About Disability & Relationships

The Bible provides many anchoring truths to guide us and spur us on in life. Caregiving families see those truths tested with extraordinary perspective. We also get to see — up close — how a foundation in certain truths stirs our compassion for each other, bolsters our sense of purpose in suffering, and reassures us that each person in our family is celebrated by God.

Each and every one of us is one hundred percent unique,
purposed for God’s kingdom,
and made for belonging.

Consider how our lives would be transformed if we really believed this one thing about ourselves and each other!

Let’s take a closer look at this foundational belief through the lens of eight truths about disability and relationships. By transforming the way we think, God’s truth has power to shape the way we live. By shaping the way we live, God’s equips us to cope with challenge or crisis. As we learn to cope — by the power of the Holy Spirit — we thrive in relationships with God and others.

God's good design is reflected in every person.

God’s good design is reflected in every person.

The fingerprints of God are on every person and circumstance. No matter how complex, senseless or hopeless a situation looks, every person has value and carries the image and power of Christ in them with the potential to contribute God-purposed things to this world.

Exodus 4:11
Then the LORD said to him, “Who has made man’s mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the LORD?

Psalm 139:13-15
For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.

Suffering and weakness do not negate the value of life.

Suffering and weakness do not negate the value of life. 

Our culture hates inconvenience. Jesus welcomed interruptions and weaknesses as Divine opportunities. His value system is quite unlike the world’s. We worship knowledge and intelligence. God values wisdom over knowledge, and character over intelligence.

Our personal worth, our value to God, even the degree of our sin are not dependent on our abilities or anything we can earn. That means we are completely free of responsibility to earn God’s favor. All that God requires of us is faith. Even faith that is metaphorically as small as a mustard seed — one of the smallest seeds in the plant kingdom— is enough for Him.

Romans 3:23
All have sinned and fall short of the glory of God.

Ephesians 2:8-9
God saved you by his grace when you believed. And you can’t take credit for this; it is a gift from God. Salvation is not a reward for the good things we have done, so none of us can boast about it.

1 Corinthians 12:22
The parts of the body that seem to be weaker are indispensable.

God is not limited by anything.

God is not limited by anything.

Issues that are so complicated for us are really very simple to God.

We scratch our heads (or pull our hair) over suffering that seems senseless. We wrestle with dilemmas about everything from medical ethics to school services to whether to accept governmental disability benefits. We train ourselves in different ways to pray for healing that might be more effective. We wait, often for a very long time, for answers to our questions and God’s response in areas where we are powerless.

In his book, Why the Church Needs Bioethics, John F. Kilner offers relatable encouragement, “Godly waiting reorients human beings from demanding that God perform, to prayerfully declaring that God’s character is holy, good, just, full of mercy, abounding in grace, and the source of all comfort. God’s gifts are good, both to desire and receive. The human heart tends to strive stubbornly for its wishes rather than rest in the contentment that flows from acknowledging God’s faithful blessings.”

Isaiah 45:7
I form light and create darkness, I make well-being and create calamity, I am the LORD, who does all these things.

Jeremiah 32:27
“Behold, I am the LORD, the God of all flesh. Is anything too hard for me?

Disability frees a person to multiply grace.

Disability frees a person to multiply grace.

The culture values self, comfort, happiness, ease and an entitlement mentality. We feel no one deserves to suffer. Yet suffering positions us to give and receive unique and good gifts from our Heavenly Father and each other.

Disabilities help us appreciate different values like slowing down and unconditional love. The world teaches self-reliance. The Bible teaches God-reliance. There are times when the hardships of disability stretch us to trust God more. Over time, we become increasingly reassured of His faithfulness. We learn how freeing it is to surrender our weaknesses to the God of the universe!

Those who are most dependent are most freely used by God as a means for grace. My daughter with Angelman Syndrome is not limited by the need to work eight hours and tend to a home. She is entirely available to bring joy and love to others in a way that is profound and unique to her.  She teaches us humility in caregiving. She shows us how to persevere despite external obstacles and internal limitations — hers, and our own. She gives us a living picture of God’s unconditional love and challenges us to love one another well.

I must admit, my husband and I have often wished we could protect Carly’s siblings and others from the “burden” of her care. Yet we are reminded that the promise of God’s grace is just as much opportunity for them as it has been for us. 

James 1:2-4
Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.

God is first and foremost concerned with our hearts.

God is first and foremost concerned with our hearts.

Disability, suffering, and weakness remind us of the severity — and very broad reach — of the impact of Adam’s sin. We see in Mark 2:5 that God is generally more interested in changing people than changing their circumstances.

Mark 2:5
And when Jesus saw their faith, he said to the paralytic, “Son, your sins are forgiven.”

Our relationship to God and others is what matters most to Him. And God will use whatever method he needs to in order to accomplish that intimacy. This means that God’s response to our requests for healing, to our weaknesses and sin, and to all of our concerns in life, always begins and ends with how our circumstances work to shift our focus and affections toward Him and then others.

Jesus said the two greatest commandments were to love God and love each other. We were told to carry our crosses instead of seeking our own comfort or happiness. Suffering makes us long more for heaven and less for the world. It encourages a Kingdom perspective. Others will see that God Himself is our treasure.

God desires to restore us to right relationship with Him and others.

God desires to restore us to right relationship with Him and others.

God loves us even before we love Him. He created us and wants to be intimately near to us. Our lives will not be untroubled, but they will be deeply satisfying and life-giving when our choices, attitudes and beliefs drive us toward God rather than away from Him. Until we choose to receive the generous love Jesus offers, we will miss out on the richness of life and relationships.

In his book Disability and the Sovereign Goodness of God, John Piper offers this challenge: “The truth is that suffering can only have ultimate meaning in relation to God. Jesus says that the purpose of blindness is to put the work of God on display. This means that for our suffering to have ultimate meaning, God must be supremely valuable to us. More valuable than health and life. Many things in the Bible make no sense until God becomes your supreme value.”

Romans 8:26-28
We do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what the mind of the Spirit is, because the Spirit intercedes for the saints according to the will of God. And we know that for those who love God all things work together for good, for those who are called according to his purpose.

1 John 4:19
We love each other because he loved us first.

If you are ready for a reset in your relationship with Jesus, watch here.

God transforms people and churches when we engage with each other through the adverse circumstances of our lives.

God transforms people and churches when we engage with each other through the adverse circumstances of our lives.

Christ-following families living with disability know the transforming power of doing life together in diverse community. Our own families are a picture of this on the smallest scale. Imagine what the family of God would look like if we learned to live out that same kind of community on a large, Kingdom-minded scale!

It is really really important for leaders in the Church to recognize and embrace this truth too. Individuals and families impacted by disability need to know they belong. As the Church, we need to get engaged with each other amidst challenges. But we don’t do this just because we are really nice people. We need to get involved in messy lives because God tells us to, because Jesus showed us how to, and because the Word promises that God will glorify Himself and give good gifts through unique people and unusual circumstances.

Godly communities make the compassion and truth of Jesus easily accessible to all who seek it.

Godly communities make the compassion and truth of Jesus easily accessible to all who seek it.

Making church and church programs accessible is a matter of eternal salvation for any person. This certainly includes people with disabilities and their families.

We have an opportunity to defend life. This opportunity has nothing to do with anyone’s ability. It has everything to do with making the Good News of Jesus known to all. Jesus is the Giver of life and the Way to life. He is the Giver of all good gifts. He witholds no good thing from those who walk in faith (Psalm 84:11). We are called to follow in that Way — to walk in that Light.

1 John 1:5-7
This is the message we have heard from him and proclaim to you, that God is light, and in him is no darkness at all.If we say we have fellowship with him while we walk in darkness, we lie and do not practice the truth.But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus his Son cleanses us from all sin.

Of this we can be sure:

God made each of us for a purpose and is going to help us in that purpose.


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Robust Support Starts with Knowing Your Purpose

Ephesians  3:16
I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being.

Caregivers who develop a sense of their purpose see several benefits. For example, when we understand the reasons why we are designed for and called toward a specific need, we are better able to stay focused on our goals and stick with them. A sense of purpose also helps us remember why we are valuable — and vulnerable. No important work will come without obstacles. Recognizing from the outset that hardship will come is part of what reminds us why we are a valued contributor in the first place. This stirs our compassion and reassures us that there are brighter days ahead. We’re spurred on to persevere and remain committed.

My own sense of purpose as a caregiver started from my aspirations to be a mom and my natural inclinations as a nurturer. But when we became parents of a child with disabilities, I needed more than that. I had questions for God about the much bigger picture and my role in it.

Our daughter, Carly, has complex needs that require a lot of us. Without a clear sense of God’s unique and valuable role for me in caring for her, I don’t believe I would be able to sustain the energy the situation demands. I certainly would not be anchored by a sense of peace and rest in my soul after doing it for more than two decades unless I recognized some Divine purpose and calling in this lifestyle.

It doesn’t take much for disability issues to become consuming for me and for our family. So, understanding what really drives me helps keep my emotional and logistical boundaries clear too. When my boundaries aren’t tended and my limits aren’t confessed, I start to develop an unrealistic sense of who I am and what my role is. I give my contribution too much importance and get prideful, restless, angry, or bitter. That’s when I’m prone to emotional and spiritual burnout too. It’s important for me to keep in perspective what my purpose is — and what it is not.

There are times when I wrestle with my insufficiencies, questions, and fears. I want to give Carly the best possible therapies and nutritional interventions, for example. I want her seizures, sleep, and anxiety under control. I want to help my family manage our stress well. Knowing my purpose is not to fix or prevent all these problems is incredibly freeing! But I really must keep taking my thoughts back to the truth of Who I belong to and what I’m called for. This keeps me from running aground on the deserted wasteland of woe.

We are human, but we don’t wage war as humans do. We use God’s mighty weapons, not worldly weapons, to knock down the strongholds of human reasoning and to destroy false arguments. We destroy every proud obstacle that keeps people from knowing God. We capture their rebellious thoughts and teach them to obey Christ. 

2 Corinthians 10:3-5

When identifying your purpose, consider your reasons for caregiving and your reasons for needing help.

What are your reasons for being in a caregiver role?

  • Your love for a child or spouse may inspire you.
  • You may have a vision for helping others experience a certain quality of life or achieve their full potential.
  • Perhaps you feel called by God to serve someone who needs help for a season or for a lifetime.
  • You may recognize personal strengths and gifts that make you uniquely equipped to help.
  • Your value of life and relationships may guide you.

Consider these scenarios:

  1. Jona feels her purpose is to protect her daughter from things that may harm her and fix the things that limit her.
  2. Jack sees his purpose being to support his son in achieving his potential in health, development, faith and friendships.

How might each of these parents experience life within their sense of purpose? Are their goals likely to empower them or create fear and added pressure? Are their aspirations reasonable? What might their purposes say about the source of their ultimate reliance? Who does Jona seem to trust more — God or herself? Does Jack’s purpose leave room for compassion in himself and others?


What are your reasons for needing a support system?

Maintaining a clear sense of purpose for having a support system frees you from guilt and fear about cultivating those supports.

  • Recognizing the long-term nature of your role may help you see the need to pace yourself with adequate help.
  • Appreciating that others need a balance of your time too (e.g., siblings, friends, spouse) can move you to prioritize help.
  • Prioritizing a team of supporters is good for you and it is good for your family.

It is worth noting here that the vision for the entire system springs, to some degree, from the primary caregiver. Caregiving parents will often form the foundation of purpose that flows to the rest of the family and sets a tone for other resources that make up the team. I’ll discuss more about this vision opportunity in a future post about cultivating a collaborative support system.

The truth is, our ultimate encouragement comes from knowing that God holds the purpose, not us.

Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails.

Proverbs 19:21

We are vessels of His grace and power so that His greatness will be made known — not our own greatness. Yes, I would like people to think well of me. To be honest, I would like to think well of myself too. But what really matters is what God thinks of me — and how he enjoys us together, sharing life and love in the broader community. God thinks me worthy, capable, and valued in a life role I never expected. It is a role with Kingdom purpose. His reasons for placing me — and you — in this caregiving season are countless, mysterious, and prevailing.

You, too, are worthy, capable, highly valued and Kingdom-purposed for such a time as this.

In his book, The Truest Thing About You, David Lomas explains, “You can’t become who you are alone. You need people. The truest thing about you isn’t all about you. It’s about God, and it’s about others.”

There is something powerfully freeing in knowing all of this caregiving is about something far bigger than an one of us. The privilege and adventure of walking out a hard life within intimate relationship with Jesus and aligned with His purpose is deeply satisfying.

It is a wonderfully driving force behind how and why we live, love and serve each day.

“But I have raised you up for this very purpose, that I might show you my power and that my name might be proclaimed in all the earth.”

Exodus 9:16

RELATED: 8 Habits of Caregivers with a Robust Support System

RELATED: Six Caregiving Advocacy Tips I’m Learning All Over Again

If you’re needing extra confidence, encouragement, or tools to assist you in finding your caregiving groove, please reach out for professional help. Walk Right In Ministries is available with personalized education, consulting services, counseling, and referrals to meaningful resources. Our team collaborates with a broad network of local and national organizations dedicated to strengthening churches, communities, and families when disabilities are involved. Fill out the Interest Form or visit us at WalkRightIn.org to learn more.


Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families.

Kelley Chose the “Yes” of Faith

As every mom has, I have been faced with some difficult decisions. And with five children, three with special needs, one might say my faith has been flexed. Several early life experiences contributed to my learning to be a caregiver and advocate. One season in my life presented extraordinary challenge to the trust I have in my Savior. 

As the oldest child in my family, I developed a nurturing protective spirit with my siblings. I also grew up with a father who was a veterinarian. He gave me perspective of the emotions and dilemmas I would later face as an adult.

By the time I was ten years old, I was feeding and caring for five orphan dairy calves. I would arrive at the dairy with my father, and the farmer would announce that an orphan calf would cost too much to feed out. This was completely unacceptable to me. So, I would commence pleading with my father to let me care for the calf. Usually, we had a baby calf in the floorboard of my dad’s truck on the trip back to the clinic. My mom would roll her eyes and sigh, “not another one.”

My father would talk to me about anatomy, chemistry, and critical thinking. I remember watching him do exploratory surgery on his patient, working out loud through his process of elimination. This instilled a passion for research and learning. My core values expanded to include a wider view of the world and, by the age of 10, I had simultaneously experienced a spiritual awakening.

I married young at the age of 20. I had my first child a year and half later. We welcomed our second child twenty-one months after that. My husband was working at a wonderful church as a youth pastor. We owned our first home and we all enjoyed good health. I’ve come to appreciate the saying,” health is wealth.” We found out we were, unexpectedly, having another baby.

When our third child, Conley, was born, we immediately knew something was very wrong. He was not breathing. Nurses and doctors worked feverishly to save him. It was almost as if it was happening to someone else. I couldn’t believe it was happening to me. For the first time in my 24 years, I was completely helpless and terrified.

I remember finally going to meet Conley the next day. Tears fell uncontrollably as I stared at this infant with tubes and monitors. I lived at the Dallas Ronald McDonald House for three and a half months, seeing our older children on weekends. I knew my life had forever changed in the blink of an eye. 

Tears fell uncontrollably as I stared at this infant with tubes and monitors.

Conley went on to require frequent hospitalizations and over twenty-five surgeries and procedures. I wrestled hard, asking God “Why?”

I underwent a procedure to ensure our family was complete. However, God had other plans. Almost eight years later, I discovered I was pregnant with our fourth child.

About eighteen weeks into my pregnancy, we learned there were major complications. I was pressed to have an abortion. The influences and morals instilled in me could not justify an abortion. I deeply believed that God, like a maestro, was creatively composing every life event.

Much like during the nightmare of Conley’s birth, our fourth son, Camron’s, birth required the immediate work of a medical team to save his life.

For the next five months, I lived in a hotel in San Antonio across from the hospital. We had moved to Austin a month prior so Conley could attend Texas School for the Deaf. My husband lived in Austin and commuted to work in San Antonio. I stayed at a hotel in San Antonio with our older sons, to allow them to finish their school year. I vividly remember the day I found out Camron’s diagnosis and prognosis. It was grim. He was profoundly deaf and blind with a feeding tube and tracheostomy at age three weeks.

As I left the hospital and approached the bus stop, I sat on the bench watching the buses come and go. I was mapping out my plan to step in front of a bus.

As my spirit warred inside of me I finally acknowledged and grasped the promise of an inherently good God. Just like Job, God blessed the later part of Job’s life more than the first. He said, will you still love me through these circumstances? Job’s response in faith was “Yes.”

I chose “Yes” that day.

I have learned through these experiences that God is the Maestro of my life. Sometimes he calls me to rest. Other times I am called to action. In all things I understand He is the center of every life event, and only He understands the intricacies of my ultimate purpose.

God continues to connect the dots in my life, through advocacy, service, and community. One of my favorite Bible verses, encompasses both my spiritual and world view:

Work willingly at whatever you do, as though you were working for the Lord rather than for people.

Colossians 3:23

RELATED: Community Story (Camron’s Birthday)


Kelley Cagle, beautiful woman and writer

Kelley Cagle is a freelance writer and special needs advocate with a passion for mentoring young moms who have children with special needs. Kelley shares from her own experience as the parent of children with disabilities. Kelley has five sons. Two of her children have CHARGE Syndrome, a micro deletion affecting a multiple body systems and organs. Both boys are deaf-blind and on the Autism spectrum. Kelley and her husband Chris have been married over 26 years and live in Texas with their two youngest boys.

Kelley’s husband, Chris, shares a Community Story celebrating life, faith and fellowship.

Tips for Caregivers Concerned About Maintaining Their Energy Reserves

This is the sixth article in a series exploring what puts family caregivers in their “sweet spots” when supporting a family member with special needs. Today we’re exploring some challenges and opportunities for caregivers who prefer life at a slow, steady and relatively predictable pace.

Caregiving requires a lot of energy. It can be challenging to maintain the mental and emotional reserves for the normal activities of daily living. Many situations are physically demanding as well. In some cases, there may be little margin for the kinds of activities or rest that refuel the caregiver whose energy level generally runs on the low side. If that’s you, I think you’ll find encouraging tips = here to understand and optimize your unique strengths.

Frankly, some people seem to want a slower paced life even when there are no extra demands. If you are one of these people, your “dream day” might include going to work, sitting at a desk working through your tasks (even tasks others might consider tedious), going home for a nap, eating dinner, taking another nap, watching some television and then heading to bed for the night. You may watch in wonder — or even feel intimidated — when others fill their discretionary time with things like hiking, crafts, sports, shopping and hobbies. You may feel guilty about “pulling your weight” with caregiver chores like laundry, meal prep and housecleaning but find doing the family bookkeeping comes rather easily.

Are you someone who tends to work at a slow pace or frequently worries about running out of steam? Perhaps others have expressed frustration about your making your fair share of the sacrifices. That may be because you feel that every bit of energy you extend is a sacrifice. You may feel like life takes far more effort than you have to offer.

Here’s an important fact to consider: your fear about running out of energy may be far closer to perception than reality. In fact, believing that you may completely run out of “gas” at some point could be negatively impacting your relationships while robbing you of a joy and satisfaction in doing some things you really would enjoy. Becoming more willing to make sacrifices can reduce your hidden fears, build your self-esteem and enhance your relationships.

The truth is, you have some wonderful passions, a great love for people and a profound capacity for efficiency all wrapped up in a calm, easy-going package! In your strengths, you’ll have a conservative, practical and peace-loving nature that uniquely equips you with valuable problem-solving skills and an uncanny ability to mediate tense situations. You could be your spouse’s best friend at an IEP meeting, transition planning meeting or care coordination conference.

You can be a tremendous advocate for your loved ones. You may see and respond to problems and injustices with an uncanny instinct for improving quality of life for others. Your voice and purposeful involvement are a powerful force and will help you stay energized when you’re otherwise tempted to sleep your life away. Be aware, however, that you may feel angry and anxious when others are not taking action where you see the need to make things better. Your frustration will be greatly reduced when you learn to give others permission to be imperfect.

When it’s time to make decisions, you may appreciate finding someone trustworthy to share in that process with you. And release yourself to make imperfect choices along the way toward satisfying conclusions. You may need to share more information than what comes naturally for you so that others can understand your thought process, perspectives and ideas. But discussing the options and coming to mutual agreement with your spouse or loved ones will be pleasing for everyone.

If you’re worried about being blamed or criticized when decisions don’t turn out well, you may benefit from approaching more decisions from a mindset of safety and encouragement. For example, you might agree to say, “Let’s give this new therapy a try. If it doesn’t work, we can always try a different approach.”

Logical persuasion and positive reinforcement can be very motivating for you. So it can be helpful to you and your family if you stay open to conversations about how detailed caregiving responsibilities need to be implemented. It will also help your family to know how important it is for you to hear that your contributions are recognized and valued. You may not think you need this, but you likely do. You may be inclined to dismiss those positive vibes from others rather than allowing yourself a moment to soak in the caring and loving words others are offering. In actuality, you will greatly benefit from staying attentive and receptive to affirming feedback and appreciation. (Consider reading my previous article in this series called Tips for Caregivers: Feeling Valued and Competent.)

Be aware that when you are feeling stressed, pressured, or inconvenienced, you may be very difficult to be around. Your family, friends and co-workers may struggle to find peace anywhere around you during those times. In frustration or resentment, you may be inclined to procrastinate, be indecisive, and be difficult to motivate. You may also be hurtful to others with your verbal defenses.

To stay in a positive groove, it will help to maintain a moderate amount of independence, alternate frequently between task-oriented responsibilities and people-oriented activities, be clear and direct in communication, and learn how to use your skills in persuasion for godly causes.

Your family longs for your involvement — not just because more hands make lighter work but because they genuinely enjoy your presence. You have so much to offer and your peaceful spirit is always appreciated in the room. You will benefit from staying engaged with others. So, be encouraged to join the family for a trip to the park, table games, movie night and a weekend getaway. Linger at the dinner table and take part in the conversations (without adding your sarcastic comments).

When you take initiative to stay engaged with your loved ones and community, you will discover the power that well-paced and positive socialization has to energize you.

TAP YOUR CAREGIVING STRENGTHS

If you tend to be laid back or need a lot of rest

  • Seek a role on the caregiving team that maximizes your natural motivations and mutual interests with the person who has extra needs (e.g., reading books, watching movies, going for car rides, listening to music)
  • Frequently alternate time between doing task-oriented things and spending time with people
  • Take frequent breaks, even short ones, to rest your mind and body
  • Ensure for yourself an adequate balance of work, exercise, diet and relaxation
  • Maintain a clear definition of your value and purpose on the team
  • Learn to recognize Jesus’ promptings and follow Him one step at a time


The Bible offers an abundance of help and encouragement.

Proverbs 21:2-4
People may be right in their own eyes, but the Lord examines their heart. The Lord is more pleased when we do what is right and just than when we offer him sacrifices. Haughty eyes, a proud heart, and evil actions are all sin.

Psalm 19:12-14
How can I know all the sins lurking in my heart?
    Cleanse me from these hidden faults.
Keep your servant from deliberate sins!
    Don’t let them control me.
Then I will be free of guilt
    and innocent of great sin.

May the words of my mouth
    and the meditation of my heart
be pleasing to you,
    O Lord, my rock and my redeemer.

Ephesians 4:22-24
Throw off your old sinful nature and your former way of life, which is corrupted by lust and deception. Instead, let the Spirit renew your thoughts and attitudes.Put on your new nature, created to be like God—truly righteous and holy.

Hebrews 12:11
No discipline is enjoyable while it is happening—it’s painful! But afterward there will be a peaceful harvest of right living for those who are trained in this way.

Psalm 37:6
He will make your innocence radiate like the dawn, and the justice of your cause will shine like the noonday sun.

1 Thessalonians 5:11
So encourage each other and build each other up, just as you are already doing.

Isaiah 40:29-31
He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.

Philippians 4:19
And this same God who takes care of me will supply all your needs from his glorious riches, which have been given to us in Christ Jesus.

Lord Jesus, thank you for showing me that my peace-loving ways are valuable to those around me. You have given me an important ability to see different points of view and help my family come together around common goals. I do confess, however, that sometimes I can be stubborn and inflexible. I feel exhausted and afraid I’ll never have enough wisdom or the energy that others need from me. I need your help. Empower me with your Holy Spirit to courageously and sacrificially invest in my family. Teach me to notice your promptings and follow you in faith, one step at a time. Amen

To learn more about tapping into your strengths as a caregiver, you can also watch one of my conference presentations on the subject at YouTube.

Tell us in the comments what works for you and your family!


Lisa Jamieson

Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families. Lisa is the primary contributor on the www.WalkRightIn.org blog sharing practical and spiritual encouragement for parents and other family members caring for children with health and developmental challenges. She also serves on the Key Ministry writing team where she contributes monthly articles for special needs parents and church leaders. Her personal blog www.lisajamieson.org also provides encouragement for people who find themselves in challenging places.