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.

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.


The Secret to Thriving, Not Surviving

It was a quiet morning at the oceanfront hotel where we were staying at Virginia Beach. The breeze off of the Atlantic Ocean gently combed the beach grass. Families of birds chased the retreating waves, their footprints too light to make any impression in the sand. I walked alongside the beach, taking in the overcast grey sky blending into the waves. The beach approached a peninsula, promising a view that would surely not disappoint.

As the beach rounded the corner, another expanse of beach came into view with the same grey watercolor. I kept on walking. The horizon continued to taunt me as I walked closer to the end of this beach segment, followed by another bay of sand to trudge through. I kept my eye on the next corner. But each corner rounded to a similar scene. It seemed to be never-ending. It was beautiful, but it was also the same view no matter the number of steps I took. 

This walk felt like my life — a “Groundhog Day” of caring for my disabled daughter. There are beautiful moments. But most days are focused on each step without seeing the view. We are dealing with many of the same issues that we have dealt with for a long time. Only now, we are older. And my daughter is now bigger. It is becoming more physically challenging to keep up. Our patience has grown greater. Our wisdom has grown deeper. But our fatigue has grown more real as well. 

On my walk, I was looking for the beauty around the corner. I wanted the AHA! moment that would allow every grain of sand in my shoe to be worth the gritty journey. But each turn of the corner proved to be more of the same.

A vertebra "shell" found on Virginia Hampton Beach
A vertebra “shell” found on Virginia Hampton Beach

Chronic suffering is being trapped in a never-ending cycle of the same. We all have a painful thorn in our side that does not let up — an unanswered prayer, a salt-wound relationship that never heals, a broken heart that cannot ever be whole, a dream we must mourn. The reality is this broken world is marred by loss. 

I want to thrive in loss. Just survival is not enough for me.

I want a thri-vival

So how do we answer the deep aching feeling that there must be more? 

For the Christian, there is more. 

The only way to understand the intersection of a suffering mankind and a good God is to interpret this life through the lens of eternity. 

The only way to find purpose in our suffering is to know that our lives exist for more than this world. The more we accept decay — and, for that matter, learn to embrace it — the more we become thrivers rather than just survivors.

Decay is everywhere.

When I was walking this beach with the repetitive view, I finally looked down. Shells, seaweed, and abandoned nettings were peppered amongst the sand. All were carcasses of life that once was. The beach is a battlefield littered with the remains of an ocean ambushing its prey. What is one’s child’s playground is the cemetery of mollusks. What is one woman’s treasured pearl is the oyster’s expulsion of waste. What is one family’s treasured keepsake of vacation, is the skeleton of a conch.

Decay co-exists with beauty.

In fact, decay is required. For the beauty that emerges from decay is richer, more fruitful, and lasts forever. Like the compost that enriches the growth of a garden, decay, disability, and death are the fertilizers of a richer beauty to come. Yet decay occurs at the same time that flowers bloom. Beauty and pain can be enwrapped in the same moment.

There is no better example of this paradox of beauty and pain than the cross. The cross is the intersection of many contrasts — injustice and justice, death and life, hatred and love, grief and celebration. When Jesus died on the cross, He did more than punch a ticket to heaven. Purposeful suffering was exemplified. 

Still, living the joy of the cross on a daily basis is not easy. Especially in the mundane everyday struggles of motherhood or caring for the disabled, suffering can feel purposeless and never-ending. We can be deceived into hopelessness if we allow emotions to overshadow truth. The energy needed for everyday surviving makes thriving seem impossible. When the days of survival mode stretch into weeks, months, and years, we must learn how to thrive in the pit. So how do we seek thri-vival?

  1. To thrive means that we change our expectations about decay. Our decay is not unique to our generation and decay will continue until this world belongs to Jesus again. We can certainly point out the decay of others, but we are often unaware of our own decay. We expect progression, not regression. And yet our society, many of our relationships, and our own bodies are fighting the natural decay that comes from the fall of man. We would like to believe that we are always getting better, but in reality, we ourselves are not immune to entropy. As our bodies and minds age, our ability to process our worlds is also dampened. But one day, this decay, too, will lead to eternal beauty. And decay will not exist in heavenly realms.
  • To thrive means we recognize our need for rescue. Grace covers our sin, for our salvation. But sanctification requires us to embrace pit-dwelling. He gives our feet a place to stand between each rung on the daily climb. This state of dependence is uncomfortable and yet necessary for our trust in God’s goodness to grow. The Gospel is lived daily in our lives when we are in a state of dependence. For our need for a Savior is often when we are at the end of ourselves. 
  • To thrive means we learn to abide in Jesus daily. We rely on His mercies to be new every morning and enough for today’s trials. We humble ourselves to be a servant rather than the source. Abiding in Jesus is trusting Him to fill in the cracks daily. Abiding involves constant connection with our Source of strength. We are emptied continuously so that He can fill us continuously. And we must ask for help. Ask for His wisdom. Ask for eyes to see His care for us. Ask for a heart of praise. And these one-second prayers build our relationship with Jesus and help us see the treasures in each exhausting step. We must sit under the Bible as a servant and not stand over the Bible as a critic. As we learn of God’s plan for the decay of this world, our souls are comforted and reassured that He has an ultimate plan for redemption. 

That is thri-vival — where pain and beauty co-exist. It is possible to be a thriver and not only a survivor. To thrive is to abide with Jesus. Because when we look only at ourselves and our circumstances, the decay is discouraging. But when we look at the cross, decay is defeated. It is in the daily struggle of chronic Christian suffering that we learn to abide. We learn to trust in the One who carries us from birth to death to eternal life. God alone sustains us.

Our walk on the beach becomes about Him, not about us nor the view that we think we deserve. 

The walk to heaven is more pleasant when we let go of the “should be” and “should not be.”  We will stop walking for the purpose of the view. We will walk because we are called to walk. And then we will start to see the treasures in every step. We will expect decay in this world rather than be disappointed by it. And one day, at the vantage point of heaven, we will look down at all of the faded footprints in the sand and we will understand why. The deepest sinking sand will be the sweetest places we thrived as we learned to abide in Christ.

This is the hope of the Christian in chronic suffering: There is more. And for today, He is enough.

“Listen to me, house of Jacob, all the remnant of the house of Israel, who have been sustained from the womb, carried along since birth. I will be the same until your old age, and I will bear you up when you turn gray. I have made you, and I will carry you. I will bear and rescue you.”

Isaiah 46:3-4

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.

Resource Corner: Tools for a Listening Season

Hello, hello my friends! As we make the final stretch toward Christmas, I wanted to share some tips, tricks and listening tools that are helping me through exhaustion and loneliness. They might seem simple but they have been game changers for me.

Start your day with the Lord — through a worship playlist.

I have not been sleeping well. Families impacted by disability and other special needs will surely understand this. For the past couple weeks the glaring alarm clock has become the bane of my existence. When I succumb back into sleep (I’m trying to get up on the first alarm!), I’ve started to play my worship playlist so I wake up to it four minutes later. It has really helped me start the day in a better mood and grounds me into the day to come.

Upon listening to the songs on my list throughout my morning routine, I’m realizing how deeply personal the songs are to my prayer life and relationship with Christ. And in my relationships with others too. I’ve been praying about what has hurt me and what I take to the Lord every day.

I have searched for songs that speak into those things. I’m finding that the words of others can be borrowed for a time to help heal and shape some of my deepest hurts. Some songs included, but not absolutely limited to, are Holy Water by We The Kingdom, Good Good Father by Housefires, Hallelujah Even Here by Lydia Laird and Whole Heart by Hillsong United.

While I know introspection and worship can be deeply personal, this music has been a fun and interesting way for me to be reminded daily of the goodness of God. I’d love to hear some of your favorite songs that help get you through the day!

Set intentional time aside with the Lord.

I’ve had the Holy Bible app downloaded on my phone for has long as I’ve had a smartphone. But I recently discovered a whole new way to use it. I may be late to the party but I usually use it to look up scripture when I’m creating an Instagram post or when I’m trying to think of a new email signature. Little did I know that they have hundreds of devotionals!

You can browse the numerous categories they have or you can search by keyword. It can read the content to you alongside any task you tackle in the day (much like listening to an audiobook or your favorite podcast). I’ve added a video below to show you how to find a study you like and how fast it can be.

The app also provides interactive bible study stories for our friends who are young and young at heart. The devotionals can range from just a few days to several months long. It will keep track of your progress and even send you reminders everyday if you want it to. You can do studies privately or with friends to keep each other accountable. And you can save plans for later if you stumble on one that looks intriguing but you’re not ready to get started.

Sometimes I get so intimidated by guilt or obligation to do my quiet times and therefore don’t do them. This has made it easy to commit and make space in my day.

Lighten up and laugh with others.

Since this month’s Resource Corner seems to be all about listening, I think I’ll round it out with the Mama Bear Podcast. Sean and Mary Susan McConnell adopted their daughter Abiella, who has cerebral palsy and microcephaly. As the host of the show, Mary Susan shares any and all stories of their lives.

Upon bring Abi home, Mary Susan was pursuing her Masters in Curriculum, Instruction, and Assessment and has since completed her Doctorate in Special Education. She is one smart mama and is so raw and real I believe that I am friends with her when I am listening to her stories. She brings intimate insight into struggles and solutions that only a special parent would know and she makes this big world feel so much simpler when she talks about Abi and the joy she feels and brings.

One of my favorite episodes is #108 where Mary Susan and Sean talk about the parenting goals they did and did not meet in 2019 and what they want to accomplish in 2020. Another one that caught my attention is #82 as Mary Susan shares a list of ten tiny things that can help in the chaos. I found it to be extremely encouraging and inspiring.

The McConnell’s make me laugh a lot I look forward to her new weekly episodes.

As we celebrate Christmas and enjoy listening to the sounds of the season, we can be assured that God hears us too. Jesus came. He knows our heart cries and our needs intimately. And He came to offer us the best of all possible gifts on the ultimate of all rescue missions.

Lo’ He is with us always — from manger babe to risen King!


Claire Krantz is a blogger, reader, hiker, camper, game-player, puzzle nut, music fan and general lover-of-people. She speaks in exclamations points — which is her friends’ way of saying she exudes cheer, encouragement, hope and fun. She grew up and lives in the Midwest where she is personally and professionally dedicated to living among friends of all abilities and celebrating God’s unique and purposeful design of every person. 

Follow more of Claire’s reading adventures on Instagram @readingwithcb.

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 licensed 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 licensed 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.”

BOOSTING FAMILY MORALE SERIES (Part 2): Developing A Complementary System

In Part 1 of this series, we looked at five ways to “keep the Light on” in special needs families. We explored things that drain energy and tend to trigger discouragement or conflict in a special needs household. In that article, we looked at spiritual fundamentals for a robust and positive family system. I hope you’ll have a chance to go back and read BOOSTING FAMILY MORALE (Part 1 of 2): Five Ways to Keep the Light On for background that leads into this second part in the series.

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.

Now let’s dig in to Part 2 of the series.


Do you know how incredibly unique and valuable you are? God’s imprint on each of us is vastly different. And you are quite a masterpiece, according to your Creator! Here’s how David tells it:

Psalm 139:16-18
You made the delicate, inner parts of my body and knit me together in my mother’s womb.
Thank you for making me so wonderfully complex!
Your workmanship is marvelous — how well I know it.
You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb.

We are not just delicately woven in our physical body. We are also complex in mind and spirit. The COVID-19 quarantine has made many of us more aware of needs like these:

  • Longing for connection with other people
  • Craving time alone to recharge
  • Missing a fuller schedule
  • Wishing we could sleep more or read another book
  • Thinking deeply and spending a lot of time doing it
  • Feeling deeply (but not always expressing it well)
  • Dissatisfied until we get stuff checked off our to-do list
  • Wanting to give or receive expressions of affection, attention, appreciation, affirmation

In fact, I’ve been embarrassed and ashamed by how needy and self-centered I am at times, especially during this COVID season! In some ways though, this quarantine-induced understanding and awareness could prove very helpful. It reveals areas where we tend to be vulnerable. It can give us clues about what we need to do in order to stay healthy and satisfied. For example, isolation intensifies anxiety for someone who needs a lot of connection with people. If that person stays attentive to their need for certain kinds of connection and finds healthy, satisfying ways to do it, they will stay energized and maintain a more positive outlook.

Darkening moods and interpersonal conflict are typically a response to inadequately met needs. Whatever your unique needs and degrees of expressing them are, that is where you’ll find powerful clues about what keeps your batteries charged or what will re-energize you and build positive momentum within your mind, body and spirit. The same is true for each person in your home — uniquely so.

We all have strengths, weaknesses and vulnerabilities to sin. Each of us is a work in progress. We are not perfect humans but we hope to be generally be headed in the direction of personal growth. Thanks be to God, there is no condemnation for those who belong to Jesus. But there certainly is opportunity and responsibility to grow as a disciple and representative of the Kingdom. Learning how to be attentive to our needs and other’s (by staying in tune with the Holy Spirit) and asking God to help us complement each other’s uniqueness (with a servant’s heart) makes us more like Jesus. It also builds morale in our homes.

Psalm 139:23-24
Search me, O God, and know my heart; test me and know my anxious thoughts. Point out anything in me that offends you and lead me along the path of everlasting life.

There are seven areas of opportunity to boost energy levels, encouragement and refreshment in your special needs family.

I’ll be writing in more detail about each of these areas in Part 3 of this series.

In the meantime, it’s important to know that you’ll get the most efficient and powerful morale boost by focusing your attention in one of these areas for each person. Pray about which area is most likely to address the true root need they have. For example, if you’ve noticed that your husband’s spirits have become low, consider what his root need may be then explore ways to cooperate with each other to meet mutual needs in a balanced way. Sometimes that means sacrificially taking turns. Ideally, this is a very cooperative process.

The other day at my house, we encountered an opportunity just like this. There was growing friction between me and my husband, Larry. The tension was getting expressed by one of us (who I won’t implicate here) as impatience and a critical tone. The other (who I won’t throw under the bus) was retreating from communication and resisting expressions of affection.

We could argue all day long about who started it and who was “right.” But the truth is, each of us had some core needs that weren’t getting adequately met. The quarantine was wreaking havoc that week. We were in a valley needing the ebb to meet the flow in a more positive way. By re-examining the list below, we recognized an opportunity to collaborate that would re-energize and encourage both of us. Larry watched a TV show with Carly that didn’t interest me while I gave myself a pedicure. Ninety minutes later, the momentum had already begun to shift to a more positive tone. In this case, he sacrificed more because he was on duty with Carly and had faced a couple of interruptions. But later that night, I gave him a neck and shoulder massage.

Balance. Compromise. Cooperation. Teamwork.

Morale is highest when we are a complementary system!


LISA JAMIESON is a licensed 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.”

BOOSTING FAMILY MORALE SERIES (Part 1): Five Ways to Keep the Light On

Families affected by special needs are well acquainted with the ebb and flow of discouragement, conflict and fatigue. Quarantine and current events are adding further stress to our family dynamics, including mental and emotional health. Just like our immune systems needs a boost of vitamin C when illness threatens, we need both proactive and responsive help for threats to our family’s morale.

In this series, we’re exploring targeted ways to bring a speedy delivery of fun, energy and hope to your doorstep! Our hope is to show the way to experience an extra strength, extended-release dose of spiritual and practical encouragement.

First off, I just want to acknowledge that families impacted by disability and other special needs can find life intense and rather complicated. Thankfully, there is a richness to life and relationships that comes through the way God has uniquely woven us into our families as well. Still, we encounter many days and situations that feel very heavy. We never know when a crisis may arise and plans are regularly thwarted. Each person in the family has times when their mood darkens. And when they do, one person’s mood can ripple through the entire household.

What are the things that seem to trigger heaviness in your heart or home?

Perhaps you’ll relate to some of these examples:
The repetitive and tedious nature of daily cares (e.g., bowel regimen, housekeeping issues created by disability such as laundry)
Seeing our child self harm
Medical crisis
Comparison to others
Feelings of isolation or being invisible
Reminders of lost dreams
Battles for a better IEP or other rights (e.g., health insurance)
Seeing areas where our child is falling behind
Feeling inadequate as a caregiver or parent
Feeling trapped, stuck or hopeless
Disappointment from a sibling who can’t play or demands attention
Resentment of a spouse who gets to go to work and escape
Guilt within a spouse who needs to work and isn’t able to help more at home
Disconnection from spouse, community or others
Pressure to make decisions
Grieving (a diagnosis or lack of diagnosis)

People use various words to describe the dark moods or conflict that creep in on the heels of such triggers.

anger, hurt feelings, defensiveness or hyper-sensitivity, discouragement/hopelessness, anxiety, grief, depression, exhaustion, lack of motivation, loneliness

Families who tend to be resilient within the ups and downs of the household atmosphere are those who are proactive in caring for each other and also responsive to clues that stress is mounting. They learn to be attentive to each other, communicate often and recognize areas of vulnerability to shifting moods. They make an effort to understand each other’s most typical triggers and cooperate with each other in making sure root needs get met — before the valley of the shadow looms large.

It’s a process and no family is going to handle the ebbs and flows perfectly. But we can learn to find a balanced family system that softens the shadows and reduces their frequency.

Proverbs 27:12
A prudent person foresees danger and takes precautions.
The simpleton goes blindly on and suffers the consequences.

5 Ways to Keep the Light On

John 8:12
When Jesus spoke again to the people, he said, “I am the light of the world.
Whoever follows me will never walk in darkness, but will have the light of life.”

What can help keep the Light on within your special needs family?

  1. Pay Attention to Where Your Identity Rests
    If you are someone who loves and follows Jesus, you are a child of God (John 1:12-13). That is who you are first and that is where your identity is anchored. Disability doesn’t define you. The beginning and end of your calling and your empowerment comes from your Creator. You are part of a special needs family but that is secondary to being part of God’s family.

    Children who grow up with solid reassurance about where they stand in that broader spiritual family will have their most powerful tool for thriving through their teens and early adulthood. As each person matures, wrestles and lives through ages and seasons of self-discovery, there is delightful freedom in knowing that their core place of “home” rests safely with God. Within that anchoring identity, each person has God’s permission and encouragement to explore their roles, opportunities and contributions in the big wide world. Resist giving disability, complex medical needs or mental health difficulties all the power over the tone of the household or mindset of the family system. You are more — individually and together — than any diagnosis.
  2. Maintain Safe, Open & Positive Communication
    Make your home and family a safe space for ongoing and proactive conversations about what is creating dissatisfaction, restlessness or grief. Resist the spirit of criticism (1 Corinthians 13:1 and Philippians 4:8). Most special needs families also benefit by seeking counseling.

  3. Give & Receive Forgiveness
    Do some regular self-examination. Not a single one of us is perfect (Romans 3:10 & Romans 3:23). Confess weakness, repent of sins and become more aware of God’s unique imprint on your soul. God will help you see yourself realistically and as His masterpiece (Psalm 139:23-24) and he promises to bring a refreshing into your life when you humble yourself and repent (Acts 3:19-20, James 5:16).

  4. Appreciate that Each and Every Individual is God’s Work of Art
    God masterfully designed every person in your family with unique needs, ways of thinking, ways of feeling, ways of relating to others, passions, talents and spiritual gifts (Ephesians 2:10). Prayerfully study your family members to develop understanding, appreciation, compassion and respect for their precious value. Aim to identify ways you can live together that are complementary and show a balanced, servant-hearted regard for each person in the family.

  5. Rest On the One Constant in Your Chaos—God
    God’s character and promises never to change. He remainsthe same yesterday, today and forever (Hebrews 13:8). His nearness, faithfulness, sufficiency and perspective are completely dependable for us.

In Part 2 we’ll be exploring ways to cooperate with each other to meet mutual needs in a balanced and complementary way. We each have our own strengths, weaknesses and vulnerabilities. Learning how to be attentive to each person’s needs and honor each other’s uniqueness builds morale in our homes. Read BOOSTING FAMILY MORALE SERIES (Part 2): Developing a Complementary System.

Then in Part 3, we will look at seven practical and biblical ways to get energized and refreshed. Read BOOSTING FAMILY MORALE SERIES (Part 3): Seven Ways to Energize & Refresh Your Special Needs Family.

I 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.


LISA JAMIESON is a licensed 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.”

Sometimes I Beg, “Make It Stop!”

How bad is the morale at your house these days? If people are going a little nutty behind your front door, then they are much like the folks here at my house. We’re restless from quarantine. We’re overwhelmed by news and social media. Like most of you, we’re trying to learn new things and make the best of circumstances. But it sure can be exhausting.

My own heart cries out for relief. But this season has been especially hard on our daughter Carly. She is 22 years old with Angelman Syndrome. The last few months have brought her great confusion, boredom, loneliness and frustration. Bless her heart, she is learning to adapt. But she continues to have episodes of negative behavior and her sleep has been more irregular than usual. That means mom, dad and respite staff are tired too and frequently finding ourselves at the end of a rope.

Trying to manage Carly’s anxiety and keep her caregivers content can feel like another full-time job for me. I’ll admit to great impatience in this area because I’m a mom who needs a lot of independence and solitude. I believe I may even be inclined to take on more projects than I should sometimes because they feel like justifiable excuses to escape the weight of certain responsibilities. I confess to sometimes avoiding my role as caregiver and consistently pulling my weight in managing morale at my house. Because I have a servant-hearted husband, I can inadvertently take advantage.

Of course, each of us has our own strengths and weaknesses. So it’s always a good idea to shape roles and tag-team responsibilities according to what best fits each person’s strengths. Still, we have to pay close attention to honoring each other’s needs and energy levels with partnership and grace. Larry and I work at being a complement to each other. But when tensions start to rise, we have to go back to the basics — understanding and cooperating with the unique needs that each person has in this caregiving family.

The road to relief and carrying lighter burdens starts with having a clear and accurate diagnosis of our own unique needs. Each of us needs to recognize, “What is the root of my longing?”

It’s tempting to blame the quarantine for everything. No doubt, we all want it to be over! Yet, in truth, it’s not necessarily that we’re longing so much for the end of quarantine but that we have deep inner hungers for things like:

  • More freedom, control or space
  • More “real” connections to people
  • More interesting things to do
  • Times for quiet and times rich with activity

With or without a quarantine, Carly needs these kinds of things in varying degrees. We all do. Now, the isolation and limitations have heightened our existing sensitivities. This season can actually be an opportunity to become more self aware — as well as more aware of the core needs of others.

Proverbs 13:12
Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.

At our house, we are regularly seeking ways to help each other tend to their soul’s longings. It requires more creativity but we are discovering that it is often possible to find reasonably satisfying ways of feeding our soul cravings despite the limitations.

Moms and dads can help kids develop awareness of their true longings too. What a powerful life skill we give them when we do this! These two things lie at the heart of effective self care:

  • Learn to take the longings of your soul to Jesus and experience His presence, power and goodness.
  • Identify healthy ways to meet your deepest needs so you don’t start seeking harmful/sinful ways of “medicating” those longings.

My husband and I keep learning how helpful it is to study our family and learn what uniquely energizes each of us. Here are some examples that God has opened our eyes to see:

  • Carly calms considerably when she can crawl into her dad’s lap and listen to a specific music playlist he created for her.
  • Carly likes to be busy with frequently changing activities so we’re finding ways to keep her schedule satisfying and we’ve updated her visual calendar to show new images we didn’t feature on her calendar prior to quarantine (Zoom meetings, Farkle games, Dance parties, car wash, etc.)
  • Larry feels more valued and confident when we speak words of appreciation and affection into him.
  • I recharge when I have permission and opportunity to retreat by myself to read a book, take a bath or watch tv for about 90 minutes.
  • Our sense of isolation or tendencies to feel invisible are best fought through serving others, connecting with friends and family on Zoom or FaceTime, playing games together (even virtually with friends), going for a walk or weeding the garden while on the phone with a friend, worshipping via livestream with our church family.
  • Friction between Larry and I is often defused by creating adequate opportunities for intimacy.

Friends, our families are well led when mom and dad are well fed. When we work together in creating an environment that adequately complements each person’s deepest needs, we all thrive.

Be encouraged. It’s a process. My family is not perfect but we’re making progress. More and more often, I feel like the wind is at my back spurring us forward rather than blowing hard on my face and chest. Instead of feeling heartsick from leaning into the pressures of quarantine, heavy news and caregiving, I’m becoming a more intentional and creative caregiver. Honestly, this season is finally making me more reliant on Jesus than on myself.

This season is giving me a more realistic view of my limitations, boundaries, needs and dreams while growing me into the person I’ve always wanted to be — someone who is more trusting of Jesus’ power and concern for us.

2 Corinthians 3:16-18
But whenever someone turns to the Lord, the veil is taken away. For the Lord is the Spirit, and wherever the Spirit of the Lord is, there is freedom. So all of us who have had that veil removed can see and reflect the glory of the Lord. And the Lord—who is the Spirit—makes us more and more like him as we are changed into his glorious image.


LISA JAMIESON is a special needs family advocate and co-founder of Walk Right In Ministries where she serves as a caregiver coach and licensed 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.”

Family Update from the Jamieson “Cocoon”

In a general sense, our family is doing quite well. We have been learning to cooperatively “cocoon” during the COVID-19 crisis. That means we’re trying to be attentive to our own personal needs, sensitive and respectful toward each other’s needs, protective and compassionate about of each person’s unique vulnerabilities and just generally trying to make the most of this unprecedented time. 

We’re trying to build bonds rather than allow the challenges to undermine them. This is not to suggest that we are always doing this well. But we are trying. For all the things competing for top of the priority lists, this idea of being an encouragement to one another has been at the top of ours. And it’s helpful to have a vision for some purpose in this surreal time. #CooperativeCocooning has been a helpful goal for the Jamiesons. (Read Lisa’s article on Cooperative Cocooning.)

We actually have more help right now with our daughter Carly than we’ve had since early August 2019. In addition to Carly’s usual full-time caregiver-friend (paid staff), one of the women who worked with her until college started last fall is wanting to work now that she’s back home studying online. We are tremendously grateful that our two respite providers are considered “essential” by our Governor and that they’re willing to strictly self-isolate for an indefinite period of time. Honestly, I would be out of my mind right now without them but mostly because Carly would be out of her mind without them. 

But there’s more to it than their just being essential for Carly’s wellbeing and my personal sanity. We view Carly’s respite staff as part of this family and ministry team. We are so grateful they feel the same way. These women work behind the scenes enabling me to do what I do every day. And they are fueled by the same passion we have to see the lives of special needs families worldwide enriched by a community sharing faith in Jesus Christ. God bless them!

For all the things competing for top of the priority lists, this idea of being an encouragement to one another has been at the top of ours.
#CooperativeCocooning

Carly is gradually adjusting to the new routines. She and I are actually on Day 24 because we were home alone for several days at the beginning of this while Larry was traveling for work and Carly’s staff support was on vacation. Those first two weeks were awful. Now that we’re learning a new groove, we’ve found it very helpful to arrange our quarantine days in ways that mirror the former routines as much as possible. For example, as the girls can no longer head to the gym shortly after lunch every day, I try to break from work and join them in the family room at 2 pm when a group of students and alumni from our daughters’ former high school do a workout on Zoom. 

Each day has it’s very difficult moments, particularly when trying to manage Carly’s outbursts of anxiety, restlessness and confusion. She is used to being on the GO! She does not like this boring lifestyle one single bit. It’s affecting her disposition (rather violent at times) and her sleep. 

Since Larry and I both work from home, this season has been “business as usual” in many respects. But some things have needed extra attention in the areas where we serve. My counseling ministry and special needs family outreach demands more creativity and time during this season. Larry is working extra hours on a team helping navigate the implications of the virus both logistically and financially. Short nights and stressful bedtime routines with Carly add strain. 

Our prayer requests may be very similar in nature to yours:

  • Continued health and protection for our family. Larry and Carly are both in the high-risk group for the virus. Our daughter Erin lives near the northern California hotspot and remains in lockdown with three roommates. Our daughter Alex lives alone in a Twin Cities area condo where she has been working virtually since early March. She is holding to strict isolation standards so she can be backup care for Carly and visit us every week or two.
  • Adequate socialization for Carly and her caregivers. Carly’s weekday support worker needs a fair amount of adult conversation and deep connection so working with non-verbal Carly alone all day and going home to an introverted roommate at night means we are working harder here to complement and cooperate with each other’s needs.
  • Anxiety management  (creativity). We are adapting new activities to meet needs within the limitations and keep Carly as content as possible.
  • Sleep. Enough said.

Friends, let’s pray with and for each other!

Lord, develop in each of us more patience, perseverance, trust, hope, kindness and gentleness. Comfort us in fears and grief that comes in waves during this pandemic season. Remind us that you are fully accessible and that we can intimately share our hearts with you in every single moment — the ugly moments and the precious ones. Would you multiply the precious moments, Lord Jesus? We need You to protect and provide. Yet in sickness and in health, You are faithful. May Your sovereign purposes prevail. We want to rest in that peace. 

Thank you that learning to slow down and focus on our relationships is a gift we can receive in the midst of this season. Teach us how to be attentive and compassionate about each other’s needs and cooperate with each other to meet those needs as adequately as possible in the circumstances. Help us to seek You first and things or people of the world second. Teach us to value Kingdom things above all else, putting our hopes, expectations and disappointments in Your perspective. Energize us by the power of Your Holy Spirit to think and reach outside of ourselves. Help each person in our quarantine “cocoons” to offer their lives as a spiritual sacrifice for one another without putting too much responsibility on any one person to meet the needs of another. 

O God, please make the precious lessons of this season grow deep and long roots in all of our lives! Above all else, teach us to love you and love each other well. 

Amen

This Pandemic Season Prayer shared by Walk Right In Ministries earlier last month has also been a source of encouragement and connection for many.

You all — our WRIM community of friends and partners — are constantly on my mind and prayers. Our Board and Prayer Team just received one of the longest updates ever in our history and we consider it great privilege to pray together for all of you!

How are you fairing with the stay-at-home orders? These are tricky days for most, extremely stressful for many and actually somewhat gratifying for others. I would love to hear how your family is doing and what is working for you as you try to adapt to these pandemic circumstances. Please drop me a note at lisa@walkrightin.org or ask to schedule a video conference.

You can also read more about Cooperative Cocooning here.


Lisa Jamieson is an international speaker, author, caregiver advocate and licensed pastoral counsellor. Her passion is spurring special needs families toward growing intimacy with Jesus and thriving relationships with each other. She is co-founder and executive director of Walk Right In Ministries and leads the Minnesota Disability Ministry Connection. Lisa is a member of the Sarasota Academy of Christian Counseling certified in Christian temperament therapy. Her books and Bible studies include Jesus, Let’s Talk which was inspired by her daughter, Carly, who has Angelman Syndrome. Lisa and her husband, Larry, have been married for 31 years and have three grown daughters.