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.

An Introduction to Special Needs Financial Planning

We’ve been sharing a lot lately about cultivating robust supports around your family impacted by disability. Since financial planning is one part of that process — and an intimidating part for many people, indeed — we wanted to take a side step in this post to share a some very practical insights from a respected friend. The following article first appeared at the Thrivent blog on June 24, 2021. It is re-shared here with the permission of Alex Gonzalez, the author of the article and a current Board member here at Walk Right In Ministries. Please feel welcome to make an appointment with Alex if you have specific questions about your own financial planning process.


Raising a child with special needs can bring joy and challenges in equal measure. Alex Gonzalez and his wife, Simone, know this well because their oldest son, Jake, lives with autism and Asperger syndrome.

Alex sums up his experience as a parent and his guidance as a Thrivent financial consultant with this simple message: “Try not to go it alone.”

“It’s stressful when a parent receives a diagnosis that their child’s physical or cognitive challenges will continue for life,” he says. “It’s normal to feel anger and grief. My wife and I needed to adjust our thinking in those painful times.”

Thanks to a supportive school district and careful planning, at 26 years old, Jake is working full time and living independently. Here is what you can learn from the Gonzalez family.

Create a financial plan unique to your family.

It is common for parents to prioritize their child’s needs over their own, especially financially. Studies by the American College of Financial Services indicate that 90% of special needs and disability family members and caregivers admit that caring for their loved one is more important to them than planning for their own retirement. But it could be even more difficult to help your loved ones if your financial future is in jeopardy.

Start by mapping out your own long-term financial needs.

Alex recommends parents work with a financial professional to create a financial plan* for long-term clarity. “It’s like the scenario where you’re on an airplane and the flight attendant tells you to put on your oxygen mask first before helping your child,” he says. For example, “If you don’t have the right kind of disability income insurance and become disabled, you will have a harder time helping your disabled child.”

Update your retirement income plans to include your child’s needs.

Putting together a solid retirement plan is also vital. From calculating retirement income needs to setting strategies to optimize Social Security or other government benefits, there are many things to consider. “Parents realize that their retirement budget could have an extra line item for their child’s supplemental costs,” Alex says. For example, accounting for the expense of experiences or services that aren’t covered by government benefits such as transportation expenses (car, travel, etc.) or therapy that isn’t covered.

And making sure that your beneficiaries are in good order is critical. Alex tells of a young adult whose parents passed away after naming their son as beneficiary of their 401(k) retirement accounts. If they had a financial professional helping with their plans, the parents would likely have known such a decision would jeopardize their son’s ability to receive the need-based government assistance he qualified for. While a situation like this is able to be remedied, it would likely take time and resources to help ensure your wishes are carried out as you intended.

Leverage the tax-advantaged ABLE account.

What is an ABLE account? An ABLE account (Achieving a Better Life Experience Act) was established by Congress in 2014 and offers individuals whose disability began before age 26 a tax-advantaged way to save money without affecting their government benefits. 

The law was in response to a potential roadblock that families faced in the strict qualification rules for need-based government assistance. Assets in the child’s name must not exceed the threshold of eligibility to qualify for Supplemental Security Income (SSI), a federal program that provides money for food and housing; and Medicaid, a state and federal program that pays for medical expenses.

The list of ways ABLE accounts may be used includes:

  • Basic living expenses
  • Housing
  • Education and training
  • Transportation
  • Assistive technology
  • Financial management and legal fees

ABLE account earnings grow tax deferred, and withdrawals are free from income tax if used for qualified disability expenses. ABLE accounts are set up through a state or state agency that administers them.

Family members and others may contribute up to the maximum yearly limit of $15,000. Government benefits will not be affected if the account stays under a total of $100,000. Any funds remaining in the ABLE account at the beneficiary’s death may be required to repay government benefits received while the account was funded. 

Consider setting up a special needs trust for your child.

An irrevocable special needs trust is a more complex planning tool that allows you or loved ones to leave assets to your child without affecting the individual’s government assistance. There are two types of special needs trusts, commonly referred to as first-party and third-party trusts.

First-party special needs trust:

A first-party special needs trust is funded with assets from the disabled individual, such as from an inheritance in their name. At the individual’s death, proceeds in a first-party trust may be required to reimburse Social Security and Medicare for services received.

Third-party special needs trust:

A third-party special needs trust is funded with assets from other loved ones, such as with proceeds from a life insurance policy. No payback is required from a third-party trust at an individual’s death.

Funds in either type of special needs trust may be used for a wide variety of expenses, including:

  • Education
  • Travel and recreation
  • Assistive and electronic equipment and appliances
  • Companion assistants
  • Vehicles

Special needs trusts are meant to supplement but not replace benefits an individual receives, making it especially important that a trust be properly drafted to accomplish its goals of preserving benefits.

Find the support you need.

Every family needs support—both personal and professional. Your inner circle for your family’s journey may Include grandparents, siblings, aunts and uncles. You might also lean on friends, your community and parent support groups.

You also may need to call in experts as well. Depending on your child’s needs and age, seek support from:

  • Your local school district.
  • A disability consulting service that can advocate for you and your child.
  • Housing assistance for special needs adults.
  • Employment agencies that encourage independence.
  • A special needs tax advisor.
  • An attorney for necessary legal documents and trusts.
  • A financial professional to help you implement your long-term financial strategy.

“These are not easy conversations, but empathetic financial professionals can help facilitate them as part of a special needs financial plan,” Alex says.

Connect with a Thrivent financial professional to create a comprehensive financial strategy that considers the overall well-being of your family. They can also help you find advocates and legal advisors who can assist your family.


Click here for the WRIM profile on the Thrivent Choice catalogue.

Walk Right In Ministries is approved as a Thrivent Choice organization meaning that Thrivent clients can direct their Choice Dollars to WRIM. If you are a Thrivent member, would you consider WRIM the next time you are dedicating Choice Dollars? (Thrivent pays the processing fees so that 100% of every donation through Thrivent Choice goes to WRIM and to build faith and community with special needs families. WRIM is also eligible to receive grant funding.) Find our profile link here.

We would also appreciate very much if you would take just a moment to give WRIM an online recommendation in the Thrivent Choice catalogue. You can do that here

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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A Father’s Day Tribute

It’s Father’s Day this weekend and I have a warning: I’m not going to be buying you a greeting card. I’m learning that my own words are important to you. I want my words to speak loudly to your soul—in positive ways that strengthen your spirit. I’m learning that a steady dose of personalized appreciation and encouragement from me is essential. I’m realizing that I can find more and better ways to express how much I value you. And I want to teach our kids to do that too.

I am thankful…

  • You don’t try to be just like all the other dads. I’m sure it’s tempting to compare yourself with others who might seem to be doing it better. I compare myself to other moms sometimes too. If there are any comparisons, I want other people to inspire us, not drag us down.
  • You are learning to be yourself. It makes my heart glad that you are uniquely you. And you are well-equipped to be the dad our children need.
  • You provide for your family. Beyond the ways you contribute financially, you also fix things, help make things, play games, wrestle on the floor with the kids, share ideas and perspectives, speak reason, plan adventures and make us laugh.
  • You fill a role that I cannot. While I may spearhead things like the IEP, your voice in those meetings still matters too. While I often run point on things like therapies and grocery shopping, your oversight on car, yard work and home maintenance eases my mind! I’m grateful we can keep working to optimize our personal strengths on this crazy team.
  • There are many ways you make me feel supported. I promise to call those out in specific ways more often, because I want to encourage you and reassure you of my appreciation. I feel less alone on this special needs journey and more like part of a team because of you.
  • You bring a sense of stability to our chaos.

I’m sorry…

  • Sometimes I have fought harder for a great IEP than I have for a strong, healthy relationship with you. Our children need that. We all need that.
  • Sometimes I resent the opportunities you have outside of caregiving. I don’t want you to feel guilty about that. I’m just being honest.
  • I don’t always cooperate with your efforts to lead and serve our family. I want to give you space and freedom to lead from your own strengths and style. I hope you’ll cooperate with mine, too. I pray that our individual roles in this family will not be in competition, but complementary.
  • For those times when my actions and words—or lack of words—have discouraged you.

Please forgive me.

Photo credit: Nathan Anderson on Unsplash.com.
Photo credit: Nathan Anderson on Unsplash.com.

I understand…

  • It’s hard for you to stay engaged. By the nature of your work and needs for your own self-care, your time at home can be limited.
  • You didn’t come into fatherhood with role models for what it looks like to be a special needs parent. Your own dad wasn’t perfect, either.

I hope you…

  • Grow increasingly confident and energized as a father—just do YOU!
  • Feel safe to be yourself with us—to share your grief, weaknesses, fears, disappointments, hopes and dreams. Even if we can’t “fix” them, we can honor each other in the process of life. I value knowing your heart.
  • Find connections with more dads who understand the road you are on, as someone with a child who has special needs. Just as I am building friendships with other special needs moms, I am learning there are men all around the world walking in shoes like yours and they want like-minded friends, too.
  • Keep learning with me. There are too many things for just one person to know and understand about how to help our child(ren) thrive. Our two perspectives are better than one when it comes to understanding a diagnosis, navigating our medical complexities, evaluating therapy options, implementing a special diet, budgeting for special needs and home modifications, advocating for a fair and inclusive education and keeping on top of insurance matters along with all the regular matters of the day.
  • Join with me to find better ways of tag-teaming on caregiving, so each of us has adequate opportunities for self-care.
  • Find regular encouragement. And I hope more of that will come through me and your family.

I am looking forward to another year of parenting with you. Your partnership matters and I know we are the team our child(ren) needs. No matter our circumstances, we get to laugh together, cry together, try new things, experience new adventures, learn from each other, forgive each other (over and over again, as each of us is in-process) and grow stronger as the unique family that we are. None of us is perfect. We’re a work-in-progress. And that process finds positive momentum when we stick together.

You are deeply loved. Yes, the kids and I love you! For sure we do. This Father’s Day, we are committed to trying harder to express that to you on the daily. We want to get better at telling you very specifically why we love and appreciate you so much. Thank you for being patient with us.

I love you and thank God for you.

This article first appeared on the Key Ministry blog in June 2020.


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.

When Lions Come, We Can Rely on Palace Training

When I was 7 years old, I was diagnosed with Ectodermal Dysplasia. I vividly remember driving to the University of Texas Health Science Center with my mother and father. I remember them telling my parents the diagnosis and prognosis. The tears rolled down my mother’s cheeks. I was terrified of the new unknown. I was told I had only developed 3 permanent teeth. Period. I began learning to follow my heavenly Father without knowing what the future would hold.

I’ll be honest, this part of my story is hard to tell. There are things about it that are extremely painful. But I want to share it because I see God’s ”palace training” in my life.

Yet, God has NOT given us a spirit of fear but of power, love, and sound mind.

1 Timothy 1:7

The phrase “palace training,” evokes ideas of unfamiliar practices and experiences we are not privy to. Only the elite living in the palace are trained to reflect the honor and respect of their king or queen.

Moses is an example of someone God put into palace training. God had a plan for his people. But to accomplish this, He needed someone with specific training. Moses’ mother placed him in a basket at the river where Pharaoh’s daughter bathed. She trusted that Moses would be part of a greater plan God would bring into motion.

Moses was a Hebrew, being raised in a palace. He was being taught the rules and persuasions of a king who would, one day, free God’s people. God was providing palace training for the man He would use to bring about the Exodus — the leading of His Chosen people to freedom and promise. 

Navigating childhood and teenage years with a noticeable disability was difficult. I was accepted into a study program at the National Institutes of Health in Bethesda Maryland. I spent most of my high school years enduring surgeries and procedures so I could have teeth. During the spring of my junior year in high school, I underwent the final surgery. It was excruciating. During my convalescence, I was homeschooled for three months.

Finally, the time came to place my prosthetic teeth. I looked in the mirror and began to cry. My gratitude was overwhelming. The healing was long and painful. As my body healed physically, God was working on a calling in my heart. I had no idea what would come, or where I would serve, but emphatically acknowledged His voice. 

I met my husband, Chris, in my junior year of high school. It was just months before my implant surgery. I was still wearing dentures. One night, he picked me up for dinner and a movie.

While we were eating, I realized he had a strange look on his face.

I asked him, “What is wrong?”

He replied,”Uhh….your tooth is gone.’ My front tooth had broken off of my denture and I hadn’t noticed.

I was mortified!

Later on, my husband told me he fell even more in love with me at that very moment. God had sent me a man that loved all of me —because of Whom I loved. 

When God takes us through palace training, the outcome is always meant to foster wisdom and courage. You see, God knew Chris and I would, one day, have two children with special needs.

God knew our children would endure countless surgeries, procedures and hospitalizations. God had prepared me, through palace training, to empathize and love these children with a honed personal experience.

It is true. I have wrestled mightily with God over the why of my special needs kids. Ultimately, I accepted the peace God brings in trusting Him even when.

Sometimes God sends a lion into our lives. Rest assured, that if he sends a lion, you will be equipped with the training to fight.

“The Lord who rescued me from the claws of the lion and the bear will rescue me from this Philistine!”

1 Samuel 17:37

In March 2016, I wrote the poem, The Lion Awaits. It is a testimony to God’s faithfulness in my life. The lions have come. But my Father has taught me well. He has trained me with strength for today and bright hope for tomorrow.

 THE  LION  AWAITS

The soul rejoices, day and night, to the peaceful presence of His strength and might.
We hear his voice in the soft still night.
“I have blessings untold,” the Messiah invites.
The heart beats out, ”the joy of the Lord is My Strength!”

An unknown test is silently delivered
         swiftly with one blow.

A soul screams, “Why? Have you forsaken me?”
The Father says, “I love you child. I let the lion come.”
The soul wails, “I will be destroyed!”
The Master soothes, “It is for your good.”
The soul fights and curses the lion.
Emmanuel says, “Stand up and face the lion, for I am with you!” 
The soul whimpers,” Why, my Lord do you stand far off?”
The Creator says, ”Stand firm that I may glory in the power of your endurance.”
“I am slain,” wept the soul!

The Redeemer said, “You must endure unbelievable pain to join me someday.”
The soul reverently surrenders, and tells the Healer,
         “When I despaired even of life, a whisper was heard.“

“You will have trouble, but I have overcome the world.”


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.

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.

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.

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.”