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.


A Robust Support System Requires Asking for Help

1 John 5:14
And this is the confidence that we have toward him, that if we ask anything according to his will he hears us.

Many caregiving families are hesitant to ask for help because they don’t want to lose their privacy, their sense of control, or their pride. If we’re honest, many of us aren’t even sure what we need or how to ask. Even more, we’re not confident people will respond. Fear of rejection is a debilitating condition that impacts the whole family.

“I don’t like to ask for help.”
“Asking people to help me makes me feel very vulnerable.”
“I’m a private person. I would rather not have strangers coming into my home.”
“I don’t want to be too needy.”
“What if nobody responds?”


These are all common and understandable sentiments. All of us in families facing disability or other complex situations understand the dilemma. Asking for help can be so painful. The proverbial saying feels so true about our helpers — we can’t live with them, and we can’t live without them. For a myriad of reasons, we’ll wind ourselves up with stress at night trying to figure out a way to thrive without needing to rely on anyone else.

Those with a robust system of supports say the costs are worth the benefits.

When we weigh the costs of trying to go it alone, our perspective is usually worth reconsidering. Play it out for a moment. What might life look like for you or other family members in 10, 20, or 30 years if you don’t start right now getting better at asking for help?

The consequences of avoiding it range from inadvertent neglect of relationships and imbalanced attention toward siblings to distanced relationships with grandchildren, exhausted and depressed spouses, and radically decreased earning potential for the breadwinner(s) in the home.

And that’s not all.

When we don’t yield to God’s prompting about asking for help, we get in His way. And it’s never a good idea to get in the way of what God is doing within and around us!

My friend, John Knight, shared this good word in his blog many years ago encouraging special needs parents to move out of God’s way and leave the opportunities wide open for community engagement to develop.

“God calls some to extraordinary acts of love and service.
And if they’re not given a way to express that, they become really really unhappy.
So, we need to stop being afraid of taking advantage.
We need to stop saying to ourselves, ‘someone needs it worse than me.’
We need to not let the enemy win.”

What happens if you put out the call for help but hear crickets? That was my husband, Larry, asked himself over twenty years ago when we were starting to recognize the significance of our daughter Carly’s needs.

RELATED: Carly’s Thanksgiving Story

We learned that it was simply going to require an act of trust — vulnerable trust. If it was truly God’s prompting that we ask for help, He would provide. He would do it in His way and timing. We’ve experienced seasons of remarkable, overwhelming help. And there have been prolonged seasons of painfully listening to crickets.

Over the years, we keep learning that when the response is less than satisfying to us, we should not necessarily receive that as a sign we have done something wrong or that God wasn’t answering.

When the answer we receive from God seems to be “no” or “wait,” it may be about someone else altogether. While He is stretching our patience muscles, it can be about something much broader than our situation. His purposes and ways almost always have to do with many more people than just you and me. For example, if our asking isn’t met with positive response, it may be that someone needs to see the need going unmet. It may be that someone — maybe even many someones — are not being obedient to their own call.

God will meet you with comfort and strength in the waiting season while others are sluggish or stuck in their sin. It’s hard to understand that process and it can feel like rejection. The sting on our hearts is understandable to God. We can ask Him to meet that need too.

If necessary, continue to wait. And don’t quit asking when the Lord prompts you to announce fresh reminders about your needs.

2 Peter 3:9
The Lord is not slow to fulfill his promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance.

Medical professionals told us Carly was unlikely to ever walk independently. In this photo, she is leading friends on a half-mile walk in the park during the Angelman Syndrome Foundation’s annual Walk in 2009.

Learn the Art of Delegation

You can’t assume people know that you need help or understand how they can contribute. Most care teams with robust support have learned to be bold and courageous about seeking help. They have learned to delegate. Delegation is an art, not a science. Ultimately, you’ll need to admit that you are powerless and need God’s help with circumstances, relationships, responsibilities, emotional health, and finding encouragement.

You can recruit help among friends, family, neighbors, church members. Recognize that your situation may tug the heart of people close to you but also be intimidating to them. They will probably need training. Sometimes that “training” starts weeks or even years ahead of time. It often begins by a person observing how you interact with your loved one in the natural course of doing life together. Allow people to hang around you, asking questions in their own way and time.

RELATED: “Let Me Know How I Can Help!” (This Will, Because They Won’t)

Build a List

In the meantime, make a list of tasks you’re unable to get to. Keep the list handy for when friends or family do offer to help.

Recognize that you may perceive rejection where it doesn’t exist at all. It is extremely common for caregivers to misinterpret the reasons why they are not getting the help they need or hope for.

RELATED: Defining Roles Can Encourage and Empower Parent Caregivers

His purposes and ways almost always have to do with many more people than just you and me.

Plan for the Worst Days

In between the really hard days, you may feel reasonably confident that you and your family can remain healthy and on track. But that is very difficult without support. Be careful about letting the good days lure you into complacency about cultivating healthy systems and robust resources. Enjoy those great days but plan for the worst days.

Your family will benefit greatly by being proactive in this area. Use the energy you have in those stronger times to be intentional and forward-thinking about how to foster the kinds of supports you’ll need when the harder moments or seasons come.

RELATED: 8 Habits of Caregivers with a Robust Support System

Give Invitations Without Obligation

I have learned one very valuable lesson from one of my own adult daughters who has been learning things through relationships in the national Sibling Leadership Network. Those who grew up with a sibling who had disabilities or other special needs explain that they want invitations to participate without the sense of obligation. Many appreciate offers to be included but they want to maintain their sense of autonomy while making their own decisions about how they get involved.

In her book, Same Lake Different Boat, Stephanie Hubach shares how Joseph, son of Abraham, maintained a proper perspective about the role of people in his life:

“Joseph’s God-centered focus did not preclude his asking for assistance from others. After Joseph revealed the dream of the chief cup bearer, he said to him, “When all goes well with you, remember me and show me kindness; mention me to Pharaoh and get me out of this prison” (Gen. 40:14). Joseph was not afraid to ask for help. Yet Joseph was not demanding. How can we tell? If Joseph’s comments after the revelation of the dream had not been an earnest request but a demand, he would have exhibited an incredibly negative attitude toward the chief cup bearer upon his release — and it would likely have been included in the narrative. Instead, Joseph’s God-reliance allowed him to have a proper perspective of people. He could be vulnerable and ask for help, but he knew his ultimate Helper was God himself.”

This invitation-without-obligation approach to asking for help offers valuable insight for many situations. When you make needs humbly and enthusiastically known without attaching them to expectations, you are more likely to get genuine support that is more effective, long-lasting and satisfying for everyone.

Accept Imperfection

It is almost always true — some help, even imperfect help, is better than no help. Parents are a child’s first caregiver and God uniquely equips every parent to provide for their children’s needs in certain ways that no one else can. Still, no parent can be everything their child needs. In our own weaknesses, we need God’s help, and we need support from others.

It is even true that our children benefit from having a community of support around them. One of the great gifts we can give our child with special needs, is a circle-of-support that develops and evolves around them for a lifetime of community.

It is hard to trust God as we release some responsibilities to others. They won’t always get it right. And with our vulnerable children, we tend to feel everything needs to be as close to “right” for them as humanly possible, all of the time. But if we were everything our child needed, they wouldn’t need God. And we should want them to learn their need for God.

Part of asking for help is learning to have compassion for ourselves in weakness. Let us also have compassion for others and give them reasonable space to “learn the ropes.”

Get Out and Live!

Yes, go out and live! Take some risks and trust that God will bring fruit from your investment in bravery. Find places, people and activities that inject some fun and joy into your life. Then let God knit and weave some of those connections you make for future purposes.

Remember, however, that friends and mentors don’t replace professionals where certain expertise is essential. This may include a financial advisor, personal counselor, marriage counselor, pastor, caregiver/peer discussion group, grief group, support group specific to a diagnosis, or other special interest or affinity group.

Examples of affinity groups that have greatly benefitted our family have included the Angelman Syndrome Foundation, Foundation for Angelman Syndrome Therapeutics, National Association for Child Development, Key Ministry, Joni and Friends, our church, and, the Real Talk Connect group that I lead.

Siblings of someone with special needs can benefit from check-ins from a school social worker or participation in Sibshops. Seeking professional help for yourself and your family is common among thriving families impacted by disability.

Learn how to tap into respite and financial resources through your state or county’s Department of Health and Human Services as well.

The National Organization for Rare Disorders offers a Rare Caregiver Respite Program designed to give back to caregivers—the parent, spouse, family member, or significant other—of a child or adult living with a rare disorder. The program provides financial assistance to enable the caregiver a well-deserved break. Learn more about this opportunity here

Keep cultivating your friendships. We all need one or more close friends who will receive help and encouragement from us, and who will reciprocate that care and concern. This is someone you can call and say, “I’m feeling low today. I need some encouragement.” With a trusted friend, you might say, “Remind me why I do this and how I’m good at it.”

We need to develop a lifestyle that includes both giving and receiving. But at the end of the day, the world will always fall short of fully satisfying our cries for help.

Only God can do that.

Matthew 6:33
Seek first the kingdom of God and his righteousness, and all these things will be added to you.


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.


8 Habits of Caregivers with a Robust Support System graphic
Subscribe to the blog today and get the latest additions in this series directly to your inbox immediately as each releases!

COMMUNITY: God Works through Intersections

Many of us walk through life trying to look “put together” while internally craving connection with others in deeper and more meaningful ways. We thrive in relationships based on things like love, integrity, transparency, commitment, respectful challenge and grace. Getting “real” with others isn’t easy but it’s important.

Incredible things can happen when our lives authentically intersect with others. Ideas are exchanged, support is given, love grows, a tangible expression of God is realized. In fact, the Bible says that a loving community gives us a picture of what God is like!

“No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us.”
1 JOHN 4:12

Fifteen years ago, Walk Right In Ministries founders Larry and Lisa Jamieson were just beginning to appreciate the power of a Christ-centered community. They had seen individuals, couples and families come together into healthier, stronger and more satisfying experiences of life and God when they were connecting with others who shared their desire to grow in faith and relationships. Since they had been carried through a storm in their marriage by a small group of Bible Study friends, Larry and Lisa understood the value of prayer, encouragement and accountability on a deeply personal level. A couple of years later, their daughter Carly was born with severe disabilities and they were on the receiving end of a remarkable expression of practical help and prayer.

Unfortunately, they were also discovering that such Christ-centered, supportive communities were rare, particularly for families facing a crisis. It was troubling to meet more and more people struggling to maintain strong marriages, face adversity with hope, and experience friendships where Biblical support and prayer were central to the relationship. The Jamiesons are frequently heard saying, “the communities we’ve been part of have been remarkable but Jesus would NOT want our experience to be remarkable — He would want this to be common-place!”

At Walk Right In Ministries, we understand this two-fold challenge:

  • Christ-centered support communities are frequently unavailable or inadequate to meet people’s needs, particularly when those needs involve disability, chronic health issues or caregiving
  • Hurting people find it very difficult to reach out and ask for help in ways that empower others to respond

Walk Right In Ministries is working to build bridges among people as well as between those people and the Living God. We want to encourage you and connect you towards fellowship, churches and support communities that will help you grow in Christ and thrive in life.

“And let us consider how we may spur one another on toward love and good deeds, not giving up meeting together, as some are in the habit of doing, but encouraging one another — and all the more as you see the Day approaching.”
HEBREWS 10:24-25

To hear more of the Jamieson’s story about how God can use community, watch their interview on 100 Huntley Street and read Finding Glory in the Thorns.

How Walk Right In Ministries Got Its Name

The inspiration for the name Walk Right In Ministries comes from the Bible and the experience of the Israelites crossing the Jordan River to the Promised Land.

Now the Jordan is at flood stage all during harvest. Yet as soon as the priests who carried the ark reached the Jordan and their feet touched the water’s edge, the water from upstream stopped flowing. It piled up in a heap a great distance away…all Israel passed by until the whole nation had completed the crossing on dry ground.
JOSHUA 3:15-17

In the Bible, as remains true today, God always reveals His power or presence when people responded in faith toward Him. 

We are, perhaps, most familiar with Jesus’ miracles. Sometimes Jesus simply spoke a word of blessing and multiplied fish and bread. Other times his miracles came after someone expressed their faith such as reaching out to touch his garment or crashing through a roof to be near him. 

God moved miraculously in Old Testament times as well. One of the Israelites’ many remarkable experiences of God’s powerful work on their behalf occurred at the shores of the Jordan River. Forty years of wandering in the desert were about to end. The Promised Land was in sight but the harvest-season waters of the Jordan were at flood stage and as many as three million people needed to cross. 

God spoke to their leader, Joshua, and commanded that he have the priests carry the Ark of the Covenant and step into river. God’s promise was “since you have never traveled this way before, they will guide you.
JOSHUA 3:4

Forty years prior to the Jordan River crossing, God had parted the Red Sea for them. Did they question whether God would do it again? Might the priests carrying that heavy ark have had any concern about their safety as they stepped into the unstable, murky water? We can’t know for certain what the Israelites were thinking that day on the brink of reacing their Promised Land once and for all. But we can be inspired by their obedience and trust.

The founders of Walk Right In Ministries— Larry & Lisa Jamieson — have learned time and again that when God says, “Go!” He is always faithful to their going. The first time they heard about this experience of the Israelites, it prompted them to take steps toward asking for help with their disabled daughter, Carly. They hoped that special therapies and support from their community would unlock unexpected developmental progress for her. It did so much more.

God used that step of faith to do immeasurably more than anyone asked or imagined and now countless lives are being changed for eternity.

Yes, Carly made unexpected progress but it turned out to be about much more than one child’s development. God knows our steps of faith are about so much more than what we think they are about!

God is often mysterious in His ways. He doesn’t often reveal what is coming next or tell us the end of the story. He just shows us single steps to take along the road of life. He prompts us to begin moving in a certain direction and then waits for us to respond in faith. When we do, He reveals something about Himself to us and often that involves showing us the next step to take…and then the next.

We walk through this winding, bumpy life one step at a time. And sometimes those faith-steps require walking right into a raging river of circumstances. No matter how extraordinary our circumstances are, God wants us to embrace the adventure right from this middle of His promises!

What step of faith is God asking you to take today?

Won’t you come walk right into life with us? After all, an entire nation crossed over to the Promised Land on dry ground!