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.


One Mom’s Unexpected Call

Today’s guest post comes from a woman who has discovered our life’s purposes often take time to unfold. Although Kelley sensed promptings from God from a very early age, she was well into her parenting years before her calling became clear. Truly, Kelley was created with unique gifts then put in a family and circumstances that have shaped and equipped her for something very specific and important. Today, with remarkable perseverance and purpose, Kelley is walking out her faith in unexpected and beautiful ways!


Philippians 3:12-14
Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers and sisters, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.

I grew up in a Christian home with Christian parents and grandparents. One Sunday morning during church the pastor spoke about Jesus fishing with the disciples. He described how Jesus calls us to be fishers of men. For the first time in my life, I simultaneously became aware of my sin and salvation. I invited Jesus into my life that day at the tender age of 9 years old. My journey with the Savior had begun.

I am inquisitive by nature. And my desire to learn propelled me closer to Christ. After my life-changing experience with Jesus, my siblings and cousins took notice. I was overjoyed to be able to lead my siblings to Jesus as well.

I continued to explore trust, faith and perseverance.

Shortly after I started high school, I came face to face with my need for an intimate daily walk with My Lord and Savior. I stepped into deeper waters realizing Jesus longed for me to trust Him in every facet of life.

In the years that followed, I leaned into our youth ministry at church and became a leader within the student ministry. During my sophomore year in high school, I was voted into a peer leadership role at my high school. I was invited to serve our high school’s peer assistance leadership (PAL) group.

During that time with PALS, my responsibilities included weekly visits and special outings with life skills and special needs classes. Up until then, my experience with service revolved around rehabilitating animals.

Kelley and one of her beloved dogs.

Growing up a veterinarian’s daughter allowed me to be front and center to the elation when animals were born, as well as the grief during times of loss. I developed a strong heart for service.

God used my father to teach me how to react during varied scenarios of medical emergencies. Often, while my father worked feverishly on a sick or dying animal, God was nurturing an empathetic heart in me to soothe and comfort hurting people. Dad also taught me the importance of discussing medical procedures and anatomy with accuracy and correct pronunciation. Little could either of us have known then, how God would use that training in His bigger plan.

God always invites us to join Him. He doesn’t pressure us. He doesn’t manipulate us. By the end of my senior year in high school, I felt God was clearly calling me to serve. He was busy bringing things together in my life, giving clues about direction and lining up circumstances to guide me. Still, I had no clear or direct leading as to what type of ministry I was called into.

I fell in love with my future husband at age 17. We met at church and quickly knew our future would be together. I shared this calling with Chris and we began to pray together. One Sunday in the spring of 1993, I surrendered to the calling in my heart in an official way. You see, that day, I trusted my Savior, walked an aisle in my church, and prayed a prayer for ‘Special Service’.

Fast forward 28 years. I have two special needs children. We have five sons, two of whom have CHARGE syndrome.

My sister recently reminded me of that public profession of service I made that Sunday in 1993. She sent me a church bulletin that read, “Kelley Weatherly surrenders to special service.”


I realized the special service God had in mind was very different from what I had imagined. To be honest, my idea of special service was much more glamorous!

My Heavenly Father has always bent his ear down to listen to me. His hand has always been outstretched. As a parent of two deaf-blind children, the word sight is equivocal to trust. I trust Christ to lead as I cannot see. He is my intervenor, interpreter, and advocate. I’ve experienced deep grief and pain. But his faithfulness is unwavering.

Today I can say without a doubt — “Yes!” — He called me to special service.

God called me to the highest honor: being a momma.

God makes all things good in its time. My journey to fulfilling His calling has been difficult. However, I have embraced this charge to serve my very special needs children with honor, joy and humility.

1 Peter 4:10-11
Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms. If anyone speaks, they should do so as one who speaks the very words of God. If anyone serves, they should do so with the strength God provides, so that in all things God may be praised through Jesus Christ. To him be the glory and the power for ever and ever. Amen.


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 two 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.


When God Calls Us Back To Something Forgotten

Inspiration often comes from unexpected places. Sometimes it comes through friends, family or even strangers. Other times it comes straight from God Himself. That’s the lesson guest-blogger Maureen Pranghofer is sharing on our blog today.

Have you ever created something and then totally forgotten about it? Well, what causes that? It might be that someone destroyed the masterpiece you’ve just painted, written or baked. It might be that there was a pandemic which interrupted everything. And it might be that the thing you created wasn’t born out of your ideas but someone else’s.

That’s what happened to me about 7 years ago. My totally well-meaning step mom kept saying, “You should write a book.” She wouldn’t stop. For some reason she thought growing up legally blind and with a bone disease would make a good story.

Paul, Maureen and Walter Pranghofer celebrating Christmas 2020 in their home.

Finally, I’d had enough. To get her off my back, I wrote an autobiography of my childhood called Driving in Squares. My step mom and dad made sure that the formatting looked okay, made a cover for it, and coil bound it. When I visited them in Tucson, we gave about 10 copies away to people they both knew.

I said when I got home. “That episode in my life story is done.”

Sometimes, though, when we think we’re done with something God has other ideas.

I recently asked my friend Elizabeth to come over and help clean off some shelves. We sorted through things and threw piles of junk away. She was picking up each book and CD and telling me what it was. As I responded to her descriptions, off each item went into the “keep” or “toss” bin.

“Driving in Squares” she said.

“What?” I asked. I didn’t remember ever buying a book called that. Then I remembered what it was and told Elizabeth I was surprised I had a copy of the book.

“Can I read it?” she asked. “Sure” I said.

When she brought it back six months later I held it and wondered if I should toss it. Then I set it down by my computer.

Six weeks later I got an email from my father who said, “Just to relax, I like reading your book. I’ve read it about four times. When are you going to write the next one?”

“The next one”, I thought. I haven’t ever done anything with this one!

My dad reminded me that at the end of the Driving in Squares book I’d said there would be a sequel.

And somehow, that’s how I’ve found myself in this New Year, consumed with thoughts about writing.     

Isn’t it amazing how from just mundane chores like cleaning off a shelf you can find yourself with desires that are new and changed? My writing only because I was bothered by what I perceived as nagging by my stepmom is evolving into something beautiful. And God is the only One who can bring about those surprising events that turn us around to where we find ourselves moving forward.

In 2021, we can be picking up what we had once forgotten. It may take us to new and fresh places we never imagined!

If you’d like to read my little book Driving in Squares, email me at maureensmusic@comcast.net. Let me know the name and address where you’d like it shipped. Also let me know if you’d like it in a hard copy or pdf file. Happy New Year!


Maureen was born legally blind and with a rare bone disease. Neither has ever slowed her down. She is a songwriter, author, speaker, music therapist and brailleist who also tests websites for accessibility. Since the mid 90’s, Maureen has run her own business called Braille It where she produces material in Braille for a variety of customers.

Maureen holds a Bachelor of Arts in Music Therapy and has worked as a therapist with terminally ill children, the elderly and those dealing with addiction. She has also done intake work at a rehabilitation center.

Pranghofer’s children’s book, Ally’s Busy Day: The Story of a Service Dog, is available on Amazon along with her music which includes numerous recordings. You’ll find her blogs The Walter Report and Maureen’s Musings at Maureen’s Facebook page.

Maureen lives with her husband Paul and service dog Walter in Golden Valley MN.

Tap Your Caregiver Strengths

I am a full-time caregiving mom for an adult daughter with severe-profound developmental disabilities and complex health issues. Family caregivers like me understand that self-care can feel daunting, even impossible much of the time. A nap is rare for most. A pedicure, while offering a sweet pampering pick-me-up, doesn’t have far-reaching impact.

I get up every day with more than an aching back and sore forearms. I start each day like every other parent caring for a loved one who has disabilities or mental health concerns. Those caring for an aging parent our spouse understand too. We all have desperate needs to keep up our energy, feel competent, provide safe and efficient care, remain loving and compassionate, fight fears, feel a sense of control over our circumstances, get satisfying socialization, balance attention to each loved one in our lives, do adequate self-care and generally stay encouraged.

Caregivers don’t need to live at the end of their rope! There is a way to stay energized and effective.

REFUEL

Caregivers must explore with great intention how we get energized right down to our soul. Many popular self-care tips are little more than “Band-Aids” with relatively short-term effect on a person’s capacity to serve sacrificially, let alone for the long haul. Caregivers with sustained, long-term energy pay attention to nourishing themselves in body, mind and spirit. Psalm 139 is a wonderful reminder that each of us is complex and unique, beautifully woven by the hand and heart of Almighty God. Christian temperament therapy has been one of the most valuable and transformative tools God has used to help my own family understand and appreciate God’s imprint on us. Caregivers can learn to fuel their souls in very personal, targeted and efficient ways. The process of fueling up helps us optimize our strengths, recognize areas of weakness and vulnerability, identify ways to cooperate with others and ultimately lean into the power of Jesus.

REASSESS

Caregivers are spurred on by having a vision. Do you have a sense of why God has called you to such a situation? God’s Word is rich with truth about His sovereign goodness in disability and reasons for asking us to take care of each other. We benefit from understanding our role on a team that includes God and others. We also need a well-fitting “yoke” and we need to wear it right alongside our Supreme Apprentice — Jesus. A prayerful look at Matthew 11:28-29 gives clues about how to walk in our strengths as caregivers:

Am I really carrying the “burdens” that are meant for me?

Am I carrying these responsibilities in the way that God means for me to carry them?

REPENT

Sin creates a sense of burden and fatigue. No caregiver needs any extra weight! I love the promise of Acts 3:19-20 that offers me a refreshing when I repent of my sin. Every caregiver has his/her own habits and hang-ups that hinder our connection with God and the fruitful potential of our life. I’ll be the first to admit that my caregiver stress can make me vulnerable to sinning. I am not my best self when I don’t pay attention to fueling my soul in godly ways. Psalm 139:23-24 reminds me to take an honest assessment of myself. Second Corinthians 12:9 reassures me that God’s strength is perfect, enough for me and fully accessible to me.

REORIENT

A strong and fruitful caregiver organizes time and priorities around God’s values, their own sweet spots (gifts, talents, experience and temperament strengths) and God’s calling (His unique design and purpose for each of us). Verses like Exodus 14:14, John 15, Acts 17:25 and 1 Corinthians 6:19-20 assure us that God wants to take care of caregivers. We must keep circling our wagons (or wheelchairs, walkers and adapted bikes) around Jesus Christ.

Learning to find our strengths as caregivers is a process. Learning to stay in a sustained groove of energy, effectiveness and sense of purpose is a life-long commitment. We are works-in-progress, after all. The opportunity in that process is to develop a precious intimacy with God and others. God is patient with us and delights in the adventure of our “growing up” with Him. We need to have compassion and patience with ourselves. We must also develop compassion and patience with others around us who are trying to learn their own sweet spots on the team.

Here are some ways to tap your strengths if you are someone who gets energy from doing tasks and thinking about ways to be efficient…

Check out several other practical tips for caregivers who want to optimize their role and stay energized on the caregiving team. (Click the download button below.) Use this downloadable file as a springboard for discussion with your family about how to keep each other energized and satisfied.

One of my conference presentations on this subject is also available to watch on YouTube here.

If you are a strained caregiver, let me assure you that there is hope. There are opportunities and great purposes in what you do. You will be imperfect but God redeems sins and weakness while empowering us with His Holy Spirit. He is able to create much out of nothing. He will remain trustworthy in our atypical lives even when we are doubting. Your mustard seed of faith is enough for Him. God wants you to experience peace — body, mind and spirit — and He will meet you with power right now and forever.

Psalm 73:25-26
Whom have I in heaven but you?
I desire you more than anything on earth.
My health may fail, and my spirit may grow weak,
but God remains the strength of my heart;
He is mine forever.


Walk Right In Ministries can help you or someone you care about to tap their caregiving potential.

  • Read the multi-part series on Tips for Caregivers by searching “sweet spots” on this blog.
  • Learn about God’s imprint on you, your needs and your purpose with a temperament therapist who is certified through the National Christian Counselors Association (NCCA) or the Sarasota Academy of Christian Counseling (SACC). WRIM’s own Lisa Jamieson is certified with SACC and a licensed pastoral counsellor.
  • Work with a licensed pastoral counselor to help your family understand areas of unique strength, weakness and vulnerability. We can help you identify causes of things like anxiety, anger, exhaustion, depression, fear and resentment through scripture, prayer and tools that help explain God’s unique role and purpose for you.
  • Get involved in our peer support group for family caregivers.
  • Explore practical strategies (e.g., ways to build your “tribe” of support, growing as God’s disciple). Reach out for WRIM’s caregiver consulting services.

Write us at info@walkrightin.org or fill out our online Interest Form.


LISA JAMIESON is a special needs family advocate and co-founder of Walk Right In Ministries where she serves as a caregiver coach and pastoral counsellor. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Lisa’s books and Bible studies include Finding Glory in the Thorns and the picture book Jesus, Let’s Talk.

I Considered a Life Reset and Got the Reboot I Never Expected

In the late spring of 2020 when it started becoming clear that Covid quarantining wasn’t going to end soon, I started realizing a lifestyle reset was in order. It took several months and an untimely accident to shake me to my core and get my soul powered up for the long winter at home parenting an adult child who doesn’t understand why her world has so dramatically changed.

You know how it is when you restart your computer. The process is designed to clear errors and bring the system to normal condition in a controlled manner. My phone reminds me on a weekly basis to restart all of my devices. I’m told that a reset puts less stress on the hardware than power cycling because the power isn’t removed. How interesting!

I would really like my life to be cleared of errors and to feel like it’s working in an orderly manner. And, as this computer metaphor suggests, I would benefit from staying connected to my Power Source in the midst of transitions.

Life sure does benefit from a ‘restart’ now and again. Many of us try to reset our priorities on New Year’s Eve. A new schoolyear and birthdays are seen like fresh starts for many. Spiritually speaking, repentance gives us a chance to begin anew too.

Acts 3:19-20 
Now repent of your sins and turn to God, so that your sins may be wiped away. Then times of refreshment will come from the presence of the Lord, and he will again send you Jesus, your appointed Messiah.

2 Corinthians 5:17 
Anyone who belongs to Christ has become a new person. The old life is gone; a new life has begun!

I’ve been desperate for refreshing lately while asking God to protect some old stuff I actually did NOT want gone!

My 22-year-old daughter Carly has Angelman Syndrome and lives at home. Her anxiety and difficult behaviors have ebbed and flowed through degrees of troublesome to exhausting throughout the pandemic. She’s confused. She’s lonely. She’s bored. She needs more physical touch — lots more. Like you and me, she’s sick of it all. But she doesn’t have effective coping skills or communication abilities to give voice to her many feelings and needs. She’s destroying clothing (chewing collars and sleeves, literally ripping pajamas off at night and risking damage to her teeth on zippers). She’s having trouble going to sleep at night and staying asleep throughout. She gets agitated during the day without our creatively offering as many choices as possible on laminated photo cards. I fear the poor girls feels like she has no control over her world anymore. Last week she bit me twice — hard. This from the girl who hasn’t bit me more than two or three times in her whole life until now.

In the midst of navigating Carly’s needs, the usual household chores and several pressing work deadlines, my husband and I sat down to finish recording a presentation we were doing for the Wonderfully Made Conference. We wrapped up just before lunch one day back in September and I decided to eat a sandwich on our deck while catching up on a few emails. After that I was going to record another of my personal presentations.

It was in that moment of sunshine when our already sideways world turned completely upside down.

I spilled a full glass of orange juice on my laptop. Let’s just say that the past four weeks since that day have been deeply disappointing, stretching and eye-opening. The irony of the situation was not lost on me. The conference presentation I was going to record after lunch that day was titled, “RESET: A Seasonal Necessity for Special Needs Families.”

My original inspiration for the subject was the pandemic. Now I was living a metaphor that had me squirming deeply. It took me to my knees day after day while we waited for the data recovery specialist to bring news that my badly damaged hard drive was restored. A couple of weeks went by and the conference organizers were graciously waiting on me. But their window of flexibility was quickly narrowing. Other concerns and timelines were looming too.

One morning, I had a caregiver staffed with Carly for the day so I could get back to regrouping and trying to record my presentation from memory — without my notes or PowerPoint slides. I was tempted to throw down breakfast and head straight into the battle before me. I longed to take a cup of tea and my Bible to our deck as the warm fall days will soon be past. But that felt indulgent on a day when opportunity to “take the hill” was in front of me and I had help with Carly for a limited time.

Reluctantly taking a lesson from myself and many past talks I’ve given to countless others, I leaned into Jesus’ prompting to carry His lighter burden and go to the deck anyway. Against all my task-oriented leanings and self-reliant ways, I tried to yield to that still small voice that wooed me, “be still, Lisa.” One of the original verses I had planned to reference in the RESET talk was ringing in my ears, “Come to me…find rest for your soul.” (Matthew 11:28-29)

I sat down wondering where to open my Bible but got distracted. My mind wandered to Joshua 3 and 4. Those are favorite passages that inspired the naming of Walk Right In Ministries back in 2008. And they continue to be reminder and inspiration to me about walking in faith, one step at a time, and trusting God to show each next step as I trust Him and obey Him.

For a moment I got curious. What, specifically, happened right after the Israelites crossed over the Jordan River to the Promised Land? I could specifically recall. I knew that their lives of slavery and then wandering in the desert were followed by a period of many victories in battles that seemed insurmountable. But I couldn’t remember whether the Bible gave any specifics about the transition period between marking the Gilgal spot with a pile of rocks and then heading into that first battle.

Immediately, I had a sense that there could be clues in Joshua 5 or a powerful example of a God-style, God-sized, power-packed reset. What I found there was, in fact, a gold mine. Within about 15 minutes time, I had a roadmap and encouragement to step back into my life with peace and a renewed sense of empowerment. My fear was gone and my frustration was released. The sense of pressure I felt to dig into my projects no longer had a grip on me or my blood pressure. I felt like the soldiers walking quietly and patiently around Jericho simply waiting for the final blast of the horn. I wondered what walls God was planning to throw down when I had the chance to shout praise for His perfect timing and process on the road to my Promised Land.

That was a holy moment in my life. Reading Joshua 5 and 6 with a deep personal need and new perspective was just what I needed. I was no longer stuck and my process for a course correction was clear.

As a bonus, I had a brand new (and much better) outline for my presentation. What would have taken me a couple of days to rebuild, had been reestablished with fresh perspective and new fire (passion) in just minutes. Once again, the Divine irony.

Here is the Joshua reset model God showed me.

REAFFIRM IDENTITY Joshua 5:2-7

Remembering WHO and WHOSE they were was essential to claiming the promises and hope ahead. The only reason that circumcision mattered was because there was a promise on the other side.

We tend to let disability start to define us as individuals and a family. We can tend to give disability too much power over our grief, logistics, attitudes towards caregiving, etc.When one of our daughters once exclaimed in frustration many years ago, “We’re so high maintenance!” I knew we needed to review how we thought about disability in our family.

Romans 2:29 
True circumcision is not merely obeying the letter of the law; rather, it is a change of heart produced by the Spirit.

REST Joshua 5:8

Before heading straight into battle, the Israelites spent time recovering and regrouping from everything behind them.

Getting adequate self-care feels impossible for many caregivers. We need to have compassion for ourselves in weakness and trust God while we fight for refreshment in mind, body and spirit. I fight as hard for sleep, respite, vacations, staycations and deep connections with loved ones as I ever did for Carly’s IEPs, quality medical care, therapies and healing.

CELEBRATE Joshua 5:9-10

God told them to roll away the shame of their slavery in Egypt. He knew that the Passover Feast (a celebration of God’s faithfulness) would restore their confidence in Him, boost their morale and bond them as an army of warriors for the battle ahead.

Our investment in celebrating birthdays, anniversaries, holidays and family reunions — despite how difficult that can be to make happen — is a way to cultivate appreciation and grace for each other while developing relational bonds. Those bonds will be valuable to us and our children’s future in ways we probably can’t fully understand now.

FUEL UP Joshua 5:11-12

The Israelites stopped eating the manna of the past and starting nourishing on the crops of Canaan (the Promised Land).

Ecclesiastes 7:10 
Don’t long for the “good old days,” for you don’t know whether they were any better than today.

We have to keep saturating our minds with God’s promises, our future hope. There is too much temptation to dwell on life’s ease before disability or fantasies about what the future would look like without it. Fueling up on gratitude and God’s promises helps me keep my goals and priorities in perspective. Effective soul care keeps me energized too. Our family has used Christian temperament therapy for almost 25 years to understand how God uniquely created each one of us. And that helps us learn to optimize our strengths, recognize our weaknesses and vulnerabilities, and teaches us how to tap our full potential by leaning into the power of the Holy Spirit within us.

WALK IN ATTENTIVENESS TO GOD Joshua 5:13 to Joshua 6:21

The Israelites needed to pay attention to God every step of the way. As he walked toward his battlefield, Joshua asked God, “What do you want your servant to do? (Joshua 5:14-15) As God’s army of chosen people asked for His leadership, trusted His strategy, obeyed methodically and responded thoroughly, God made them strong.

Seeking God for guidance and help as a lifestyle impacts how we put supports in place and build teams (respite staff, volunteer helpers, medical providers, supports planners, church, IEPs, guardianship and wills, etc.). God is ready to help us handle crisis (illness/hospitalization, pandemic) and approach transitions (education, caregiving team, jobs) too.

Joshua and the Israelite army did not rush but walked methodically in faith and obedience (Joshua 6:3-5) trusting for the promise (Joshua 6:2). They had to be thorough in their obedient follow-through by destroying everything and not taking anything with them. All of the plunder was to be an offering to the Lord. (Joshua 6:17-21).

This day and this situation is not just about WHAT and WHOSE battles we fight but HOW we fight them.

Matthew 11:28-29  Then 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 youand you will find rest for your souls. 

I’m still unpacking the full meaning of Joshua’s reset model for my own march toward the promises of God. And I’m excited. I’m no longer stuck in regrets about the past or lamenting what is lacking yet today. I’ve captured the vision of my Israelite ancestors and I’m walking in freedom, anticipating the surprises of God’s love.

What can this look like for YOU?
What are your next steps toward the promises God has for you and your family?
What is on the other side of COVID, our marriage storm or disability?
What is on the other side of anything that is disabling you or your family?

Like Joshua, let’s stop right now and pray, “What do you want me to do?” and then worship God. Joshua worshipped by taking off his sandals and recognizing the holiness of that moment on the edge of promise (Joshua 5:15).

Recognize YOUR Holy Moment!
Walk closely with your God and let Him pave your way to His love.

Watch Reset: A Seasonal Necessity for Special Needs Families.


LISA JAMIESON is a special needs family advocate and co-founder of Walk Right In Ministries where she serves as a caregiver coach and pastoral counsellor. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Lisa’s books and Bible studies include Finding Glory in the Thorns and the picture book Jesus, Let’s Talk.

BOOSTING FAMILY MORALE SERIES (Part 3): Seven Ways to Energize & Refresh Your Special Needs Family

This is the final installment in a three-part BOOSTING FAMILY MORALE SERIES for special needs families. I hope you’ll have a chance to go back and readPart 1 and Part 2.

I also discussed this subject of Managing Morale in special needs families during a 60-minute interview with Stephen “Doc” Hunsley MD, founder of SOAR Special Needs. You can watch that episode of “Talk with Doc” here.

You can read all kinds of books and blog articles about boosting morale. You could invest a lot of time in trial-and-error mode, testing ideas but feeling a mounting pressure or disappointment when some things don’t work as well as you hoped.

I want to help you skip past as much of that exertion and discouragement as possible. As I’ve said several times in this series, responding to the real root of what is undermining morale will give your family the most positive traction much more quickly and effectively.

So, as you prayerfully ponder these seven ways to energize and refresh your special needs family, I want to ask you to keep the unique and individualized needs of your family at the front of your mind. Home in on an area below that most closely addresses the roots of anxiety or discouragement. Here are some examples:

If someone is struggling with all the things out of their control, it should help to review the scriptures and tips under “Anchor Your Worth and Competence in Christ.”

If someone is struggling mentally, their mood is quite likely to begin shifting when they “Saturate Your Mind with Truth.”

If someone is feeling isolation fatigue, they will benefit from a strategic look at “Connect in Community.”

For those who tend to be more emotionally oriented, look closely at “Change Your Scenery.”

If things just don’t feel fair, read the noted scriptures carefully under “Remember that God is Just.”

If you’re feeling stuck or trapped, there is potential for great refreshment within the whole family when you “Take a Step of Faith” together!

If you’re simply exhausted, you’ll find a creative and collaborative effort to “Rest” pays off generously.

Now let’s really dig in to where the rubber hits the road!

Saturate Your Mind with Truth

PROVERBS 23:7 | 2 CORINTHIANS 10:5 | PHILLIPIANS 4:8

This is critical area of opportunity for people who spend a lot of time thinking or who tend to be deep thinkers. Renewing your mind with truth is a powerful mood shifter when you are vulnerable to things like fear, doubt, confusion, shame, guilt, discouragement and burnout. The scriptures (especially those listed above) will help keep your mind focused on God’s Kingdom meaning and purpose in things like suffering and waiting. When thoughts are spiraling, God’s Word is a calming anchor.

Connect in Community

HEBREWS 10:25 | 2 CORINTHIANS 1:3-5 | ROMANS 3:10,23 | JAMES 5:16

This one is BIG! No matter who we are, we all need relationships. But we don’t all need them to the same degree. Be careful about lumping people into categories like “introverts” and “extroverts.” Those labels can mislead. It is usually more helpful to think specifically about the kinds of connections different people need. Do you enjoy casual connections, want mostly deeper relationships — or both? (I’ll elaborate on these below.) It’s also important to factor in what is needed compared to what is actually expressed. For example, some people actually have a great need for relationships but don’t really show it. They may rarely initiate connections. And since they don’t express their need, people get confused or pull away.

There are very generally two kinds of connections and we don’t all need both.

  • Casual Connections — If someone in your household is missing being out and about during quarantine or needs to feel connected in the broader community, they could be the best person to do the grocery shopping. Encourage them to turn on LIVE radio and TV shows. Invite them to sit with a group around a socially distanced bonfire or play virtual games. It has helped our daughter Carly to be part of Zoom dance parties. And she’s been learning to throw dice while playing Zoom Farkle with her friend and cousins.
  • Deep Relationships — Some people need relationships where they can connect on a more intimate or emotional level. These are the kinds of relationships where there is an exchange of love, affection and appreciation. Whether it involves several or just a few people, these are the people in your household who look to close friends, family members, their church fellowship and a counsellor for a warm sense of belonging. When something like caregiving or the quarantine limits these deeper connections, it’s absolutely essential to find ways of adapting and accommodating the need. People with higher needs in this area may find it helpful to snuggle with a pet, cuddle with loved one, get creative about how to have a date, go for a walk holding hands with your partner, watch shows about relationships or read character-driven stories. They will want to play the kinds of games that rely on conversation. It should not be surprising that this person will run from a game of Chess but (all irony intended) thoroughly enjoy the game Pandemic! This type of person may even enjoy hanging out with a friend on Zoom while they both do a puzzle or craft and sip a cold beverage. You may want to give these family members permission to sit out on the driveway for social distancing conversations or spend more time on the phone.  

Change Your Scenery

HEBREWS 11:8 | ACTS 22:7 | PSALM 40:2

This is a helpful tip for shifting anyone’s mood but especially people who tend to be more creative or connected to their emotions. Those who “feel everything” or who feel things more intensely will benefit greatly from moving their body or moving the furniture! Back in April, we rearranged our family room and we love it. A couple weeks later, we we changed around our deck furniture and added new plants. All of that was so simple and has been like a breath of fresh air that keeps paying daily dividends.

When you need to boost mom’s morale, let her go take a shower. Some dads love and teenagers love to mow the lawn to get some alone time or listen to their music. It could be the change of atmosphere that is lifting their spirits. Try using paper plates, eating outside or sitting at a different table. You can invite your most creative child to build a fancy table setting. The point is to switch up the routine. Light a candle, read a different kind of book (choose a different genre), change your clothes, cut your hair, buy new sheets for your bed or bring some flowers in from outside.

Anchor Your Worth & Competence In Christ

ISAIAH 54:10 | PHILLIPIANS 4:13 | 2 CORINTHIANS 3:5

It is not at all unusual for caregivers and parents to struggle with feeling like they are doing enough for their loved one with special needs. They lament not having bandwidth to balance the needs of multiple children. Children perceive pressure to measure up too. We’re all tempted to measure our own worth in this world by what we contribute or some privately created standard of “quality.” Ultimately, our confidence can only grow from having our identity firmly rooted in Christ not in what role we play in our family, church, workplace or community. Our value to God isn’t based in our efforts. We’re saved by our faith alone. If you struggle with feeling like you don’t measure up or worry about what others think of you, remember that perceptions can be far from reality.

Remember God is Just

ACTS 17:31 | 1 JOHN 1:9 | PSALM 58:10-11

God’s word speaks loudly about His promise of justice. Ask God to reassure you by showing you meaning and purpose in your challenges as well as your future hope. If someone is really struggling in this area, a good devotional on biblical justice or the sovereignty of God is likely to be very encouraging.

Take A Step in Faith

PROVERBS 3:5-6 | 1 CORINTHIANS 2:5 | 2 CORINTHIANS 5:7 | EPHESIANS 2:10

Do you want to see your encouragement to grow, enthusiasm about life to be restored in your family or faith to blossom in someone you love? Start with one simple response to a sense of godly prompting.

Pray together asking God to show you one way He wants you to take action, then walk it out as a family. Few things create as much excitement as seeing God reveal his presence, power and goodness in response to our faith and obedience. Our circumstances are complicated and when we look too far ahead, we get overwhelmed.

Our special needs families will find encouragement in taking one step at a time while holding plans loosely and anticipating the surprises of God’s love.

Rest

EXODUS 14:14 | EPHESIANS 3:20-21

Oh, how often morale in our family wanes because we are plain bone tired and simply don’t listen to our body. I think special needs families can run on fumes so often they start to forget how exhausted they are. Overwhelm starts to feel normal.

We underestimate the transformative effects of a power nap or a shower. Or we resist resting because we’re afraid that once we stop, we’ll never be able to go again. We see complex needs and circumstances in front of us and assume full responsibility for fixing problems, finding cures, optimizing developmental potential and finding comfort for pain while also doing all the same things the neighbors do like maintaining the house and cars.

May I suggest, quit trying harder and just draw nearer to God. Give yourself a “time out” with Jesus. It sounds simplistic and super spiritual. But what if God really does love your family even more than you do? What if he really is sovereign and trustworthy? What if “taking a Sabbath rest” was really an option? Maybe it won’t be a whole day or look like the kind of rest your neighbor gets, but your family needs to cooperate with each other to get some breaks.

Take some deep breaths. It could literally help to go blow bubbles with the kids. Assign some things to a routine (e.g., Taco Tuesday, Friday Pizza night, Saturday take-out). Set a schedule so rest can be anticipated. Burdens are eased by knowing when a break is coming, even if it’s a short one or a couple of weeks away. Collaborate about decisions as much as possible.

You’ll probably have to ask for help more often. Open up your “closed system.” It is quite possible that step of faith God is whispering to you is, “ask for help, My child.” You don’t need to feel guilty about teaching siblings ways of helping either. Teamwork is not just about disability but about being part of a family. Don’t abuse anyone but learn to cooperate and complement each other. Don’t rob God of opportunity to create blessing through your community.

Do you hear in all of this an invitation to experience freedom?
I sure hope so!

The process of learning about each other and how to love each other better is the grand adventure of life, after all. Be patient with yourselves and enjoy the freedom you have to make new discoveries. No one needs to make comparisons or shame themselves for not being “that parent” who does all the fanciest, funnest things either. When it comes to building morale, a little goes a long way — and it goes a long way fast — when we hit the root needs in a targeted way.

These are powerful tools you can give your children, friends. As parents cooperate in marriage and learn to lead their dynamic family in ways that celebrate individuality, they model healthy and godly relationships. This is the essence of self-care that simultaneously complements how we care for others. Our children will thrive in future life and relationships when they learn this kind of self-care and servant-hearted relationship with others.


LISA JAMIESON is a pastoral counsellor, certified Christian temperament therapist and caregiver coach. She is co-founder of Walk Right In Ministries where she serves as a special needs family advocate. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Her books and Bible studies include “Finding Glory in the Thorns” and the picture book “Jesus, Let’s Talk.”