Category: Trust

Parents Make Hard Decisions for Their Kids

We live in a post Easter world. What mercy! I don’t want to imagine being Carly’s mom — being any kind of person, in any kind of role — in a world without Jesus, the cross, the empty tomb.

I know that you know what I’m talking about. You don’t have to be the parent of someone who is suffering to appreciate the magnitude of what Jesus has done and how desperately we rely on capturing the vision He had in order to endure. And even endure toward JOY.

Hebrews 12:1-3
Therefore, since we are surrounded by such a great cloud of witnesses (see Hebrews 11 for an historic list), 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, 2 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. 3 Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

I need that absolute assurance of God’s power and love. You see, things like pain, confusion, and fatigue recur frequently in our home. I am utterly reliant on God for help, healing, hope, wisdom, peace — for literally everything. This past week was another good example.

But the examples go way back. Thankfully, the roots of my faith are growing deeper with practice. As I’ve heard so many older parents of children with special needs say, I’ve learned what it takes to be more resilient than I used to be. I just wish I could grow like this without so many “practice” drills.

There was a time many years ago when we were implementing a new physical therapy with Carly. She didn’t like it. No doubt, she was confused by why she was being moved in uncomfortable positions. We had more than a few conversations about whether the payoff would outweigh potential psychological damage we might inadvertently do by pushing through her resistance. We certainly didn’t want to traumatize her.

In the end, it seemed we needed to trust God to help us in two ways. We asked God to cause the therapy to accomplish everything it was intended to do and also protect her from any and all potential negative side effects. We aimed to trust Him for that, and we were really intentional about trying to build Carly’s trust in our love for her, even though it might have seemed to her, at times, like we were being cruel.

A loving parent does that all the time. We do hard things for the good of our children. We know it could be years, or never, before they understand why we did what we did.

This last week, Carly underwent extensive medical testing for chronic and escalating gastric motility problems. For any average person, the tests would not have been difficult. But for Carly, they were nearly impossible. Getting her through the tests, in some ways, carried high risks (e.g., seizures, bowel blockage, emotional trauma). Given the risks, you might wonder why we pursued the testing at all.

Parenting involves making hard choices on behalf of our child. Sometimes our decisions even cause the child pain. At some point, a parent determines the potential benefits outweigh the potential negative consequences.


Seeing one’s child in pain is heartbreaking for a parent. It doesn’t matter whether their pain is physical or emotional. Few things are as painful for a parent as seeing their child hurting or threatened and not be able to fix it for them. It’s a unique kind of pain when you fear you actually contributed to it.

What kind of pain does God feel when He sees His own children suffering, knowing He can stop it. He is well aware of His intention to allow it. Yet He never allows our pain without great purpose.

In the middle of another sleepless night this week, I was second-guessing a couple of our decisions. One test required us to pause her daily bowel regimen for a week. Surely, she would develop a blockage. We could only pray that it would clear quickly once the testing was done. Another of the tests Carly was having required that we pause all of her critical seizure, sleep and anxiety medications for a full 48 hours. The risks involved in doing that were obviously high. Even as I typed this, Carly had only slept during four of the last eighty hours. (She’s back on all of her meds now but it’s taking considerable time for her system to reset.)

So, while I was praying through another wits end moment at 3 am on Good Friday morning, I realized that part of my stress and sorrow was coming from the sense of pressure and responsibility I was feeling for what was happening. I had put a lot of energy — or shall we say thought, effort, and emotion — into getting the best possible information and outcomes with the least amount of pain for Carly. And for us. It’s a natural response.

I needed a supernatural response.

In that dark bedroom, I searched my memories for any scripture that might comfort and reassure me.

2 Corinthians 10:3-4
For though we live in the world, we do not wage war as the world does. The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds.

How many of us are well acquainted with fighting with spiritual weaponry. Yet we fail to credit God with power to absolutely demolish strongholds with His wholeness! We need breakthroughs in areas of health, unbelief, false mindsets, health, development, and so much more.

Somewhere between my knowing I’m reliant on God for everything in this messy life and trusting Him implicitly, I still gravitate toward feeling responsible for fixing things — for making the breakthrough happen.

You might say that comes with being a mom. Or you might say that is a lack of trust in God. In my heart, I know that I tend to usurp His authority. And that is sin. Yet He loves me without condemnation (Romans 8:1) and patiently trains me up in the way I should go (Proverbs 22:6).

Sometimes the rough stuff comes because of someone’s weakness or sin. Other times, life is troubling and it’s just nobody’s fault at all. Either way, God uses those things to grow us up in everything from character to perseverance and faith (Romans 5:1-8). If we let Him.

I get a little off sometimes. I put my focus on the discipline rather than on my Father. The resurrected Jesus. He is where the strength is. He is where the peace comes from. Friends, He is why, no matter what, there is joy set before us!

Our circumstances are often a training ground of sorts. Our Almighty Trainer and Coach leads us with authority, wisdom, and exceeding concern for our ultimate wellbeing.

I am thankful God never puts the pressure on me to carry the authority. I am thankful that, no matter what, there is joy. Even at the cross, there was joy!

Some lessons need to be learned, and learned again.

Thank you, Jesus, that You died, and You rose. You did it once. And that was enough. (Romans 6:9-10)

I’ll keep coming back to that.

Hebrews 12:7-13
7 Endure hardship as discipline; God is treating you as his children. For what children are not disciplined by their father? 8 If you are not disciplined—and everyone undergoes discipline—then you are not legitimate, not true sons and daughters at all. 9 Moreover, we have all had human fathers who disciplined us, and we respected them for it. How much more should we submit to the Father of spirits and live! 10 They disciplined us for a little while as they thought best; but God disciplines us for our good, in order that we may share in his holiness. 

11 No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.

12 Therefore, strengthen your feeble arms and weak knees. 13 “Make level paths for your feet,” so that the lame may not be disabled, but rather healed.

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.

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!

An Uncomfortable Family Update

Good heavens, this is not how I expected to title my first blog of 2022! Yet, alas, I’m online today for some “real talk” with friends who will “get it.”

Our daughter Carly is 23 and has Angelman Syndrome. Her needs are complex and relentless. We have been extremely fortunate that she receives government benefits that include county waiver funding. In other words, we have budget to hire caregiver support and respite staff. But having funds available has, for a long time, not equated to finding people who actually want a job.

As a result, we have been significantly and desperately understaffed for most of the last four years. This is a common reality for families hit by the ongoing crisis of a nationwide caregiver shortage. (Caregiver shortages reached an extreme crisis in the US long before the pandemic of 2020. And the situation has only worsened since then.)

I can’t entirely complain. We’ve had a remarkable situation compared to most. The one staff person we currently have has been working full-time weekdays with Carly since soon after she completed her public education and transition program almost 3 years ago. She has become a dear family friend.

Covid POD girls 2020

During the summers and when Covid shut down universities, we had extra help from a second long-time team member who came back to work while studying remotely. Still, Carly’s needs are 24/7 and our ongoing efforts to recruit support (paid or volunteer) has been accompanied by the sound of crickets. Virtually no response to ads at all for years.

Throughout this time, we have been questioning a lot of things about how our lives and ministry need to change if these circumstances don’t change. Again, it’s been very hard to hear or discern what God would have us do. We pray repeatedly:

Lord, show us the next best step.

The lives of families like ours (consumed by disability issues) can be messy and chronically strained. We are constantly learning how to experience God’s presence, purpose and peace while simultaneously living in the midst of challenges that pull us toward our wits end. We’re left, daily, with questions about how to endure the moment and the future.

Now what?

Last week, we received news that threw our family into a whirlwind of learning a deeper trust in God—yet again. Carly’s amazing weekday caregiver is getting married at the end of this month. With many upcoming changes in her life, she is going to transition from full time to part time.

I will confess, Larry and I are struggling on several levels and trying to sort out what to do next. We are discouraged, angry (with God mostly), confused, tired, and overwhelmed. Circumstances like this trigger grief, fear, frustration, fatigue, hurts and hopes along with gratitude and lots of questions.

What are we doing about this?

The short answer is, “we don’t know yet.”

The longer answer is this: while we know more every day about God’s promises and character, we still know very little about His ways.

We are waiting on Him while we pray (a lot). We are also trying to give each other space to grieve and process; have lots of heart-to-heart conversations; journal about many feelings, thoughts, ideas, resonating scriptures; ask for counsel from WRIM’s Board of Directors and friends; learn from others who have walked this road ahead of us in wise and godly ways; keep our minds saturated with truth and gratitude; experiment with solutions; anticipate the surprises of God’s love (they will keep coming); continue pursuing a myriad of recruiting strategies; take space to breathe and slow down (it’s helpful and hopefully only temporary to put an autoreply on my email indicating adjusted office hours); the list goes on and on.

In any case, we will hope for the best, but plan for the worst-case scenario. You might say that motto is a matter of survival around here.

“We do not know what to do, but our eyes are on you.”

2 Chronicles 20:12

How can you pray for us?

We surely do invite you to pray with us. And as you do, please pray for other families impacted by disability as well. Anything you might pray for the Jamieson’s will quite likely be a prayer countless others around you need lifted faithfully before God too.

Thank you for praying with us for…

  • God’s generous, timely, and well-fit provision of care support for Carly
  • Carly’s adjustment to changes in schedule and people — inner peace for her as the Holy Spirit communicates uniquely with our precious daughter
  • That Larry and I would respond to all of this with trust, peace, hope, wisdom, discernment, and patience
  • That God would give Larry and I supernatural spaces of time, energy and health in caring for and enjoying life with Carly
  • Quality sleep for all three of us
  • Clarity about priorities, discipline in scaling back, trust in and cooperation with the Almighty Gardener who will prune us well (at least until we have more staff on board and trained, and possibly beyond that too)
  • 2022 planning as it relates to personal life and WRIM ministry affairs given the staffing dynamics and the labor market
  • Careful listening to how God may want to use this current adversity to guide our hearts and lives, both in the short-term and the long-term — learning to yield to Jesus’ easy yoke in new ways
  • Peace and trust in Jesus for our two oldest daughters — Alex and Erin — who live outside the home while caring so deeply about what is happening here

Friends, we need to plead with heaven together for families, ministries, and churches in this respect. There is an adversary hard at work trying to steal momentum in disability ministry on many fronts and around the world. Still, what the enemy means for evil, God uses for good (Genesis 50:20). Always. I know we can trust that.

You can trust that, too.

I can already see the Gardener doing some painful but valuable pruning. Lord knows, we have prayed for clarity about priorities for so long and now we are finding some by being forced into certain decisions while taking others on sheer faith. My family will be working on that “one step of faith at a time” mindset and prayer. 

Since I blogged recently about having worship playlists, I’ve been asked about songs I’m listening to. I can tell you that the new Homecoming LIVE album has been on repeat at our house for weeks. And Kristene DiMarco’s Wherever You Lead has been the voice of my depths with Jesus the last several days.

LISTEN to the official Homecoming album playlist (Bethel Music) here.

THANK YOU, friends! Larry and I find great comfort in knowing we are never alone in this. Jesus is our ever-present Advocate and Companion. But He has also given us this community — a profound gift!

“The joy of God’s people is not determined by their struggles but by their future destiny.”

—Jon Collins of The Bible Project—

Let’s talk about it.

If you’d like to join me and a few other family caregivers in exploring how to thrive with biblical life principles while wrestling with troubled waters of a special needs family, join us in this safe space we’ve created for such discussions.

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 3): Pace Yourself!

This is Part 3 in our series and Respite Rhythms and another installment in the ongoing discussion about the 8 Habits of Caregivers with a Robust Support System. Today, I’m sharing some “pro tips” for you to consider. These ideas have been gathered from personal experience and numerous conversations with other family caregivers throughout over 20 years in ministry.

NOTE: Let me apologize, in advance: this is another long post. This subject is close to my heart, so I’ve had a lot to say about it. Rather than break it up into an even longer series, it seemed important to drop it out here in virtual land and let you digest it at your own pace. Hah! See what I did there? 😉

If you are the parent or other family caregiver of a loved one with disabilities, you will understand the scarcity of things like rest, discretionary time, spiritual retreats, or even spontaneous intimacy in the marriage bed. It may not be possible to get the frequency or nature of breaks you hope for. But it is possible to achieve an adequate rhythm of respite and find a reasonably balanced pace of refreshing activities.

In fact, it is essential for caregivers to achieve some reasonable balance in this area. Without it, we are at risk of things like bitterness, burnout, and breakdown. Adequate respite rhythms keep us resilient in the short term and sustainable for the long haul.

Make trusting God the foundation of your respite planning.

At Walk Right In Ministries, we’re big cheerleaders for people learning to walk in faith. We understand that it often starts with just a tiny bit of confidence or a sense of God’s prompting to start in a right direction by taking one single step toward trusting God.

A first step may be to set a date. You may not even know what you’re going to do with the time yet. Another approach is to be on the lookout for activities of interest. You may have noticed an upcoming event that would bring you joy (e.g., Christmas concert). Sometimes the first step will be identifying something you aspire to do (a destination you’ve always wanted to go, a new restaurant to try). Finding the date will come later.

For Larry and me, there have even been times that we saw an opportunity when having help at home would be easily established so we locked in a general timeframe with the caregivers (sometimes more than one tag-teaming in shifts) and only later started planning out specific details about where we would go, what we would do, and exactly how long we would be gone.

RELATED: Respite Rhythms (Part 1): Start with Trust

Experiment with the length, frequency, and nature of your breaks.

Some things absolutely must happen daily while other activities do not. Some trial-and-error can be both helpful and fun. (This can be especially true for couples when it comes to finding your rhythm in the marriage bed.) Whether you take a walk around the block a few days a week, take a date day off work while kids are at school or plan staycations, vacations, and tiny-bit-away-cations, find the kinds of opportunities that work for you and your family.

Remember the scrapbooking story from last week? Done is better than perfect!

Be alert for opportunities to grab a spontaneous break or extend a planned one.

Sometimes the best thing you can do for yourself and those you love is take a nap. Learn to grab a power nap whenever a window of opportunity presents. If you need to set your pillow on the kitchen table as a reminder, do it. Getting up again may be painful but science shows that it’s worth setting a timer and going for it. Check out this article from the Sleep Foundation explaining nap science and napping tips here.

The next time you are booked for a haircut, consider adding on another service (e.g., manicure, pedicure, 15-minute chair massage) or run a fun errand to the thrift store on the way home.

Since half the battle of finding time for the haircut may be arranging help at home, asking your care supporter if they can add an hour may be easier than you think. You might be surprised how much difference one extra hour or one more night can make now and then. It can be easier to add on supports for a single respite experience than recreate all the logistics for a separate time.

I’ve discovered this to be true in my marriage respite as well. Larry and I find helpful refreshment from leaving the house for two or three hours to have dinner together. And highly coveted overnight getaways bring sweet renewal of connection between us. But I’ll be honest, one-night getaways are not always more helpful than a few hours out for dinner. By the time we check into a hotel room exhausted yet still fully engrained in the routines of home, it is very difficult to experience a meaningful time of it until we hit the 48-hour mark.

We know caregiving couples who have so little privacy and help at home that they have booked a hotel room overnight just to use it for an evening. Their evening may include take-out food and intimacy before heading right back home after using the room for only three to five hours!

Through trial-and-error, Larry and I have found that making an escape of at least two nights away, three to four times a year, is a tremendously helpful pace for us. That’s certainly not to say we always get it, but we know that’s a good “adequate rhythm” goal for us, so we work toward it.

One time when we were away for two nights, we sat down to lunch on the second day and Larry wistfully said, “I wish we’d booked a third night. It would have made such a difference.” Within minutes, we were texting home to see if the team would have flexibility to extend their shifts so we could stay away an extra night. It was an accidental discovery and blessing that has changed the way we approach planning the length of future getaways.

We have come to realize that a full three nights away makes all the difference in the world in terms of the quality of refreshing we gain from it. At that point, we’ve had an adequate opportunity to disconnect mentally and emotionally from what’s going on at home.

Of course, a full three-night getaway doesn’t happen nearly often enough. And none of this means we will turn down a single-night rendezvous. But we know what we can and cannot expect to get from these opportunities. And that is helpful.

Whether we are laying down for bed at home or away, we always pray, Lord, please make MUCH of this little!

Balance the pace of your respite to include both snacking and feasting.

The word respite may bring longer breaks to mind — weekends and week-long vacations. But don’t underestimate the benefit of a short break. Something really is better than nothing.

Try creating two lists of activities that give you any degree of refreshment. Fold a page in half vertically or draw a line creating two columns. Write SNACK (short, quick or easy breaks) at the top of one column and FEAST (generous rest stops) at the top of the other column. Keep the list hand for spontaneous inspiration and strategic planning. Add new ideas as they come to mind too.

Recognize that you need a balanced “diet” of activities from both lists. And to carry the food metaphor just a little farther, fasting is not healthy when it comes to respite breaks.

The same is true about prayer and reading scripture. You may not be able to join that in depth Bible study this year — or even next year — but you can download YouVersion to your phone so scripture is handy in the clinic waiting room or during those late-night hours awake with your child. (The app offers an enormous variety of reading plans and devotionals to help you get started and/or stay on track.) You might take in a 6-week small group study now and then. Or join with other family caregivers for Bible-based discussion as often as your schedule allows.

RELATED: Our Constant in the Chaos

Get eye-to-eye with a loved one and reconnect.

We don’t all have the same degree of need for deep affection with others. We don’t all have the same degree of need to feel part of the broader community either. But every single person needs some sense of connectedness to others. We are made in the image of God and that means we all need to feel like we belong somewhere, and we all need some exchange of love and affection in our close relationships.

I was recently reminded a sense of connection happens for me when I went to out to eat at a restaurant with my husband for the first time since before the pandemic. At home, we sit at a corner of our dinner table (90 degrees to each other) or side-by-side as one of us helps feed our daughter Carly. The side-by-side format was predominant during the pandemic. All of a sudden, we were eating straight across the table from each other, and I realized how intimate and encouraging it felt to look him in the eye while we ate and talked and shared a special evening.

We don’t really need to leave home to find that kind of connection. We simply need to be more intentional about how we position ourselves. Getting eye-to-eye with your loved ones will bring refreshment to you and to them.

Pay attention to how you and others in your family are uniquely refreshed by connections. Each person thrives in a unique rhythm that includes the number of people they want to be close to, how frequently they want to connect, and what they need to get out of that time with others.

RELATED: Tips for Caregivers about Feeling Valued and Competent

Maximize the energizing power of anticipation.

Spontaneous moments of rest may rarely come. So, having planned breaks on the calendar will help you pace yourself mentally, emotionally, spiritually, and physically. Knowing something is out there on the horizon may be just the thing to get your through a particularly hard moment, day, or week. Don’t under-estimate the energizing potential of anticipation. Anticipation of an upcoming break can help a caregiver keep situations in perspective, maintain a positive outlook, and hold on to hope.

Get things on the family calendar and don’t apologize for taking appropriate breaks. Your next weekend getaway or bubble bath probably won’t come soon enough. But seeing it coming up on the calendar may help you get through another day. If you happen to feel guilty for taking breaks, ask yourself two questions as a “litmus test” about the quality and legitimacy of your break:

  • Is the nature and duration of my activity healthy and godly?
    See Exodus 20:3, Mark 9:42, Romans 12:1, Romans 14:13, 1 Corinthians 6:12, and 1 Corinthians 10:23.
  • Is my taking this break a positive model to my spouse, children and others of what their own respite can look like?

Plan two ahead.

My husband, Larry, and I have learned that when it comes to overnight getaways, it is incredibly helpful to start that experience already having a plan in place for the next time. “Seriously?” you may say, adding, “I have enough trouble planning one break!” Bear with me while I explain.

Before we even leave for the night or while we are gone, we try to put a date on the calendar for the next time. It may be dinner again in a couple of weeks or an overnight 6 months away. But knowing it’s coming reduces some of the sting and disappointment of seeing the present moments coming to an end.

Earlier this summer we enjoyed a 5-day staycation alone at home while one of our daughters took Carly to their grandparents’ home for a “camp-like” week together. Needless to say, this was an indescribable gift to us. In the rare times we’ve had such a break, we have wrestled to fully enjoy it because we grieve how long it will be before it happens again.

When “camp week” came around this summer, it just so happened we had also planned a two-night anniversary getaway to happen about a week after they returned. On multiple occasions during “camp week,” I caught myself lamenting how quickly the week was going by. I was so grateful for the chance to take that thought immediately captive to the vision of being alone with Larry again a few days later. Whether that second tiny-bit-away-cation had been days or months following the staycation, it still would have been a powerfully comforting vision to hold.

Don’t let the enemy steal, kill, or destroy your fueling process.

Larry and I have learned to expect that there will be spiritual warfare around respite. Ah, let me count the ways this has manifested for us and the stories we’ve heard from others! The enemy’s favorite battle ground is the family and our relationship with God. We should not be surprised. We should approach it, not as victims, but as the victors we are in Christ!

The enemy has interrupted plans or caused the complete cancellation of them. We have frequently found that Carly’s sleep is at its worst in the days before we leave (to steal our joy in preparing to go) or the days after we return (to destroy the benefits we gained in getting rest).

Too often, warfare has taken the form of conflict between Larry and me. It is not uncommon for us to encounter tension or division just before, during, and/or immediately after having some time away together. Ultimately, we have become more proactive in praying about this and being on guard about sensitivities and vulnerabilities. We expect them and watch for them so that, when they happen, we are ready and less inclined to let something get under our skin. These days, instead of quickly escalating to frustration and anger when Carly keeps me awake for three nights before I leave, I do these things:

  1. Pray assertively, in the name of Jesus, against the powers of darkness while reminding myself that Carly and my husband are not my enemies.
  2. Plan little or nothing for the first morning away in a hotel so that I can sleep until noon if I want or need to.
  3. Learn to laugh with God at the foolishness of an enemy who thinks we can be easily shaken. I shake my head and speak the victory of Jesus shed blood over the situation saying, “Not today, you devil. Not today!”

The fuel tanks of our souls need things like encouragement, rest, joy, hope, peace too. What restores those things is different for everyone. It helps to learn your caregiving sweet spots and try to stay in them as much as possible. It’s also necessary to stay nourished by God most of all. He knows you better than you know yourself. He intimately knows what you need. And He alone has ability to perfectly meet your needs in the best ways and times.

RELATED: Read how Stephanie O. Hubach explains three possible responses to the relentlessness of disability in chapter 4 of her book Same Lake Different Boat.

Prioritize soul care but stay on top of self-care too.

Self-care and soul care are not entirely the same thing; Sometimes there is overlap but these two things are not to be confused. Self-care fuels your body and mind. Soul care fuels your spirit, sense of purpose, and hopefulness about the future. Self-care tends to keep us thinking about and relying on ourselves. Soul care points us to Christ, our ultimate Source for purpose, help, and hope.

Don’t neglect either self-care or soul care but recognize that you can actually live without one but not without the other. Your very life depends on that state of your soul.

Find a rhythm that works for you and then make it a priority to seek out help and guard that time with kind and respectful boundaries.

No matter what plans we make to establish respite rhythms, we are best off to hold them loosely while not giving up too quickly. We can expect very little satisfaction from the things of this world. There will be few perfect breaks. The full weight of our expectations about respite or anything else ultimately rests on the shoulders of Jesus.

With our expectations on God, we can anticipate the surprises of His love and trust that any thwarted plans will ultimately be redeemed in some way.

Respite won’t happen if you don’t prioritize it and start taking steps in that direction. You don’t have to see the whole plan and logistics worked out all at once.

Just take the first step in faith.

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.

Respite Rhythms (Part 1): Start with Trust

Parents, adult siblings, and others who care for someone with complex medical needs or developmental disabilities struggle to get the breaks and rest they need. The obstacles are numerous and varied so it is tempting to just quit trying. I’m here to suggest there is a way to approach respite that offers some satisfying and beneficial balance.

There is an adequate rhythm of rest to be found and it’s as unique as you are.

Now before you tune me out because your situation seems impossible, hear me out. I intimately understand many issues getting in your way. My own daughter’s medical and behavioral needs are tremendously complicated. I am hesitant to leave her in someone else’s care — for her sake and theirs. The reality is, even when I am desperate and my need for a break outweighs other concerns, relief is not always available. It is also true that I am often simply too tired, busy or distracted to investigate options. The idea of persuading helpers and facing potential rejection is exhausting too.

Probably like you, I’ve been tempted to minimize the need, ignore the need, or altogether give up trying to find ways to get my needs for rest met.

Yet some reasonable amount of regular refreshment is essential for having meaningful and enduring relationships, maintaining the physical and mental stamina, keeping emotionally balanced, and experiencing a sense of joy in ordinary life.

I tend to believe that I am my daughter’s most safe place. I feel a tremendous responsibility in being her primary protector. I can even tend to feel responsible for protecting others from her care. It can be hard to see the boundary lines between my responsibility for Carly and God’s capacity to ensure that she is protected, even if I am not always there for her.

Caregivers often have trouble believing that their constant caring can be interrupted without dire consequences. Tired caregivers may avoid setting limits on what their loved one demands. And they may have difficulty being confident that anyone else will do an adequate job.

Caregiver enmeshment is a symptom of lack of trust and even pride. “Ouch!” you might say. Believe me, I understand how vulnerable our loved ones can be. But let’s be honest, we are powerless over so much more than we choose to accept. We must never lose track of our personal limits — physically, mentally, emotionally — and what we are called to do. Then we must do no more and no less than that.

Moses’ own mother Jochebed had to face a similar recognition of her limits and trust God. She painted pitch on a basket to keep it safely afloat holding her son. But she ultimately put her trust in God when she set that basket in the reeds. His parents took a step of faith (Exodus 2). They could do no more and no less than that.

If I want God to do a miracle in my daughter Carly’s life, I need to get out of the way and give Him room to do it.

Matthew 13:58
And so [Jesus] did only a few miracles there because of their unbelief.

Almighty God has repeatedly shown us a model for patterned trust — and it often looks like rest. God created the universe in six days, then rested on the seventh day. God provided manna in the wilderness for six days out of every week — for 40 years — but not on the seventh day. He gave a double measure of manna on Day 6 so that everyone could and would rest on Day 7.

There are so many more rest and boundary patterns to be found in the scriptures. And there can be wonderful value in spending time exploring them. But one word points us to God’s motive — trust. God desires intimate relationship with His beloved creation. And trust is an utmost measure of intimacy.

We trust God by slowing down, paying attention to Him, setting all other loves and concerns aside, and trusting Him to use His power, wisdom, and provision for our best.

Jesus prioritized both personal boundaries (self-care) and prayer (soul care). In his book, Your Best Life in Jesus’ Easy Yoke, Bill Gaultiere suggests it is especially important for caregivers to “learn to set limits for their own soul care.” He points out that Jesus “had far more stress, far more pressure, and far more responsibility than any of us and yet he remained relaxed, joyful, and generous with people.”

You might be thinking — sure, but Jesus was God, and I am not! Well, true enough. Jesus was exceedingly committed to His Father and to His calling. Yet, we can learn a great deal from what Jesus models. More than that, we can rely on the Holy Spirit to guide, provide, and empower us for rhythms of grace and rest with Jesus as our Supreme Guide and Protector.

Mark 4:38-40
Jesus was sleeping at the back of the boat with his head on a cushion. The disciples woke him up, shouting, “Teacher, don’t you care that we’re going to drown?” When Jesus woke up, he rebuked the wind and said to the waves, “Silence! Be still!” Suddenly the wind stopped, and there was a great calm. Then he asked them, “Why are you afraid? Do you still have no faith?”

RELATED: Jesus Set Boundaries

HABIT #6 OF CAREGIVERS WITH A ROBUST SUPPORT SYSTEM
Find your personal pace for an adequate rhythm of respite.

As we launch into this three-part blog series on respite rhythms, it’s helpful to reflect on the definitions of three critical words while holding fast to our trust in God:

Respite
a short period of rest or relief from something difficult or unpleasant.

Adequate
good enough; sufficient for a specific need or requirement; of a quality that is acceptable but not better than acceptable

Pacing
walk at a steady and consistent speed; lead in order to establish a competitive speed.

Did you notice anything helpful from these definitions? Words that stick out to me include — short, rest, relief, difficult, sufficient, specific, acceptable, steady, lead.

I’m not a fan of the word “short” in this context. (We’ll talk more about that word later.)

That last word is especially intriguing to me. Lead! How often I have felt like a victim of my circumstances. My family is at its strongest when we follow Jesus’ lead in advocating for rest rather than allowing the situation to dictate our patterns. We often struggle to know how to wear the yoke of caregiving in strength. Like an immature ox, we strain and charge into the job forgetting that we can trust Jesus’ invitation.

Matthew 11:28-30
Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.”

In caregiving as in all of life, we’re in a learning process. We don’t need to do it all perfectly. Progress toward the goal is a powerful energizer and encourager.

Begin asking God what kinds of respite you need to keep yourself in an acceptable and progressively improving pattern. How might you go about receiving a degree of relief that enables you to maintain reasonable consistency in your quality of life and the quality of care you are able to give your loved one?

Cultivating a robust support system is certainly part of this. But there’s more to it. We’re going to explore that over the next couple of weeks.

Because finding adequate respite rhythms holds such significant opportunity for caregivers, we’re devoting the next three posts to the topic. We’ll be exploring more ways of finding a reasonable pacing of refreshment in your family and/or marriage when living with someone who has disabilities and/or complex medical needs. Watch for Respite Rhythms (Part 2) next week.

Respite Rhythms (Part 1): Start with Trust
Respite Rhythms (Part 2): How Much is Enough?
Respite Rhythms (Part 3): Pace Yourself!

RELATED: 8 Habits of Caregivers with a Robust Support System

“Due to God’s common grace, no one exists in the extreme of complete brokenness. Due to the fall, no one enjoys the extreme of complete blessing.”

Stephanie O. Hubach, Same Lake Different Boat

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.

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

I confess, I am one of those people who can have high expectations. I believe for the best in people. Even more, I expect great things of myself. I’m not looking for perfection, but I do highly value progress. I naturally see when there are opportunities for something — or someone — to grow or improve. Especially when that “someone” is me. It can be a lot of pressure. This inclination can be a helpful gift and it can be a great burden.

But I’m not offering this admission in order to wander into a detailed analysis of the strengths, weaknesses or sins of my observant, analytical, and deep-thinking ways. My aim here is to initiate some reflection on and potential transformation of the expectations caregivers can tend to develop.

You see, when parents find themselves in a life of complex — possibly even lifetime — caregiving, as we have with our daughter, Carly, we are regularly faced with hoping for healing, praying over various obstacles and longing for sleep. We are constantly grappling with expectations that life could get better or easier while frequently pushed to the limits of our capabilities and capacities. For me, this has been true countless times. It became exponentially truer when the pandemic hit.

Every special needs parent reading this has some idea about what I mean.

When the needs of our child are complicated by disability and/or medical issues, the bar of expectations is naturally raised. We are quite desperately reliant on having a robust system of supports in place in order to maintain quality of life. We need professionals to be on the top of their game. We need churches that will step up to a big plate. We need schools that are exceedingly creative and committed to partnership. We need our families and friends to be generous with time, courage and grace. Yes, so much grace.

We don’t want to be so needy. But we have found ourselves in an unexpected dilemma. Like it or not, caregiving radically alters our realities and mindsets about what we need and expect from ourselves, others, life, and God. We must work out our expectations of that system on a daily basis.

As we learn to live in attentiveness to the Holy Spirit, we can simultaneously feel confidently equipped for our responsibilities while utterly reliant on God.

When we feel things like weakness, grief, stress, anger, or pressure, we are tempted to look toward things of the world to strengthen us — or at least make us feel strong. But the world disappoints. People fall short of what we need from them. And we disappoint ourselves too. Our flesh may cry out in shame, bitterness, confusion, and frustration (Psalm 121).

It can be exhausting.

Unless we learn to do two critical things:

  1. Accept that this world will always fall short of our needs and expectations. People will let us down.
  2. Recognize the Sovereign goodness of God and the role He plays on our team.

Several years ago, I heard this sentiment in a sermon: “We must expect everything from God and very little from the world.” While I already appreciated that my ultimate hope and rest were in Jesus (Galatians 6:7-8), hearing that shifted my perspective and gave me a new mindset, particularly as it related to being part of a family with such signIficant needs.

In 8 Habits of Caregivers with a Robust Support System, I shared that one of those habits that effective, healthy caregivers manage to develop is this:

Adopt low expectations of the world — and out-of-this-world expectations of God.

If we had to boil all of this caregiving life down to one essential, game-changing habit, this one would be it!

Our culture values self-reliance. But if you believe that you are ultimately the one responsible for yourself and a loved one who experiences challenges and limitations, you are likely to carry burdens of inadequacy, shame, or low self-esteem. You may even burn out completely. If you are too demanding of others, they are likely to pull away and leave you feeling more alone than ever.

Caregiving radically alters our realities and mindsets about what we need and expect from ourselves, others, life, and God. We must work out our expectations of that system on a daily basis.

Receive this encouragement from Stephanie Hubach in her book Same Lake Different Boat:

“The life affected by disability is a marathon, not a sprint, and it requires the engagement of others who are willing to run the race alongside—mile marker after mile marker after mile marker. But in the relentlessness of disability is also found a hidden gift, a potential measure of God-reliance that empowers the ability to “go the distance.” Let us learn faithfulness borne of utter dependency on God.”

Only God is entirely trustworthy and perfectly capable of meeting your needs. This includes your needs for encouragement and acceptance. You can anticipate that He’ll surprise you with His generosity and creativity (Ephesians 3:14-21). God will absolutely bring justice and Kingdom purpose out of your adversity (Psalm 37:6). Psalm 104 and Psalm 136). And He will keep providing reminders about where your true help and hope comes from (Psalm 62).

While we are developing well-paced and well-purposed connections, we need to guard our hearts and minds about the balance of our expectations. It is a constant tension. As we learn to live in attentiveness to the Holy Spirit, we can simultaneously feel confidently equipped for our responsibilities while utterly reliant on God (2 Corinthians 1:8-11).

Sometimes people will surprise us and go beyond what we hoped (2 Cor 8:5). But, more often than not, our faith muscles will get stretched because someone is disappointing us. With God, we can always expect Him to do something wildly unexpected — and I mean always and way beyond our imaginings. (Eph 3:20).

That’s just the nature of a holy and omnipotent God.

Ephesians 3:14-21
When I think of all this, I fall to my knees and pray to the Father, 15 the Creator of everything in heaven and on earth. 16 I pray that from his glorious, unlimited resources he will empower you with inner strength through his Spirit. 17 Then Christ will make his home in your hearts as you trust in him. Your roots will grow down into God’s love and keep you strong.18 And may you have the power to understand, as all God’s people should, how wide, how long, how high, and how deep his love is. 19 May you experience the love of Christ, though it is too great to understand fully. Then you will be made complete with all the fullness of life and power that comes from God. 20 Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think. 21 Glory to him in the church and in Christ Jesus through all generations forever and ever! Amen.

With God, we can always expect Him to do something wildly unexpected — and I mean always and way beyond our imaginings.

Lisa Jamieson, co-founder Walk Right In Ministries

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.

If you’re needing extra confidence, encouragement, or tools to assist you in finding your caregiving groove, please reach out for professional help. Consider caregiver consulting or professional counseling for personalized care. Walk Right In Ministries is available to help you with 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.

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.

What is the Parable of Your Life?

par·a·ble
ˈperəb(ə)l/
noun

A simple story used to illustrate a moral or spiritual lesson, as told by Jesus in the Gospels.

If your life was a parable, what would the lesson(s) be?

That is a question I began pondering last summer. I was in the process of updating my website, finishing a new book and planning for the next season of life and ministry. I was thinking and praying a lot about how my talents, passions and time might best be used for the next few years.

I thought back over highlights (and low-lights) of my life and began considering how those experiences had shaped me, taught me things, stretched me for the better, sometimes kept me stuck yet often spurred me on. Events and circumstances that left a big impression on me were numerous but included things like moving a lot while growing up (including spending my later elementary and high school years in Canada), being bullied horribly in middle school, putting God “on a shelf” for a while in college, living the “American dream” for a while in our early years of career and marriage, running into a hard storm a few years into marriage, having a child with profound disabilities, helping two other children navigate life and dreams into adulthood and so much more.

From these memories, I realized some life lessons had risen to the surface and become themes that resonated through much of what I have been doing with my life in the last several years. Sometimes, those lessons were spilling over into my interactions with others and, by God’s grace, becoming resonating or teachable points for them too. It was deeply encouraging and humbling to recognize some ways God had mercifully orchestrated both good times and hard times for greater purposes than I could have imagined.

Isn’t that the truth? What can seem to be the simplest, even mundane, experiences in our lives can often be steeped in life lessons! As with the illustrations Jesus used for teaching, those lessons can turn our perspectives upside down and rearrange our ideas about what matters. Those “parables” have the power to point us in the direction of a new way of living — and even a new way of sharing life. That has certainly been true for me.

I believe these have become key “parables” from my life:

  • God uses adversity to move our hearts, lives and relationships to places we were quite unlikely to go if left in our comfortable places.
  • After a life crisis, things may never be the same. But maybe things were never meant to be the same.
  • Where there is human frailty, there is opportunity for grace to break through. And when grace appears, God’s nearness, accessibility, power and goodness are experienced in a whole new realm.
  • Answers aren’t always available to us but Jesus is always available. He is the perfect closure to our questions and ambiguous circumstances. (This is paraphrased from Tim Keller’s book Walking with God Through Pain & Suffering.)

Joni Eareckson Tada’s life is like a living parable, teaching the world about God’s sovereignty in suffering. Joni is the Founder and CEO of Joni and Friends International Disability Center, is an international advocate for people with disabilities. A diving accident in 1967 left Joni, then 17, a quadriplegic in a wheelchair, without the use of her hands. After two years of rehabilitation, she emerged with new skills and a fresh determination to help others in similar situations. Joni has written more than 50 books on topics ranging from disability outreach to understanding the goodness of God and the problem of suffering. Her life story and teachings illustrate this truth beautifully:

“God permits what He hates to accomplish what He loves.“
— JONI

This focus for reflection has been helpful for me. Will you think about it too? When we understood how our lives are like a parable (or series of parables), it can give us some clues about where to prioritize our time, how to invest in our careers and relationships, how we can help others, whether it’s time to shift gears and find a new way to live on purpose. Reflecting on life’s lessons also helps us to see God’s faithful hand in our circumstances and empowers us with the freedom to fully live!

If God is for us, who can ever be against us?
No one.
For Christ Jesus died for us and was raised to life for us,
and he is sitting in the place of honor at God’s right hand, pleading for us.
No, despite all these things, overwhelming victory is ours through Christ, who loved us.
Indeed, nothing in all creation will ever be able to separate us
from the love of God that is revealed in Christ Jesus our Lord.
—Romans 8:31, 34, 37, 39

So how about you? If your life is a parable, what lessons is it teaching? 

We would love to hear from you. Please drop us a note and let us know what parables you are seeing in your own life story.

This post was authored by Lisa Jamieson and first appeared in February 2018 at LisaJamieson.org.




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Miraculous Preservation

A common concern among caregivers, especially parents of children who have disabilities, is what will happen to our children if they outlive us. And as middle age comes, depending on the degree of toll in caregiving and other life circumstances, we caregivers tend to fear that our bodies may wear our long before we actually die. What then?

And so we pray a lot. As we’re able, we do some planning. Having an estate plan in place offers some peace of mind as does doing lots of documentation for those who will be inheriting the caregiving responsibilities. Our family has had many conversations about this and those are always very reassuring as well. But at the day’s end, when my body is aching and I’m weary to the bone (as they say), I’m left with taking it all to the Lord in prayer and begging him to preserve and protect my husband and I for as long has He possibly will!

Today I was reading the accounts of a missionary who travelled a ship between England and China in the 1930s. The ship’s route took them through the Red Sea with full views of the desert places where the Exodus occurred. Audrey Johnson’s pondering jumped off the page at me with reassurance that God’s capacity to preserve and protect His children is not limited by our physical bodies and minds.  

Audrey wrote:

Probably no one who reads Exodus can fully enter into that miracle of absolute dependence upon our faithful God who revealed Himself so clearly that throughout Israelite history and Psalms this miraculous preservation and protection was never forgotten. Think for instance of Deuteronomy 29:5 (which says): 

“For forty years God has led you through the wilderness, yet your clothes haven’t become old, and your shoes haven’t worn out” (TLB).

Audrey Wetherell Johnson

I want to remember this verse and the underlying promise it carries for our family too. Nothing has changed about God, His promises or His abilities. Jesus Christ is the same yesterday as He is today and forever. His character, power, goodness and accessibility remains as certain for me as it was for Moses. In fact, it’s even better because I (we) have access to God through the indwelling Holy Spirit!  

The very same God who so faithfully cared for the people of Israel makes the same kind of promise to me. His protection may look differently than I’m expecting but it remains dependable and will surprise me in the best of ways.

Whether you are a fellow sojourner down the caregiving road with me or someone who just needs reassurance, let us be confident of this — God is creatively preparing all kinds of “miraculous preservation” for us and for those we love.

Jeremiah 29:10-13
This is what the Lord says: “You will be in Babylon for seventy years. But then I will come and do for you all the good things I have promised, and I will bring you home again. For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me. I will be found by you,” says the Lord.”


This post was inspired by the book Created for Commitment by A. Wetherell Johnson, founder of Bible Study Fellowship.