Your Purpose Includes the Church

Christ-pointing resources for families impacted by disability have never been more abundant than they are right now.

It used to be that parents raising children with disabilities were reliant solely on medical professionals and school systems to guide them in navigating the “new normal” facing their child and family. Gradually, there have become specialty certifications for attorneys, financial planners and other professionals equipping them for the unique issues impacting our families.

Despite the great value of all these varied resources, there was much less attention given to the personal and spiritual care of special needs parents and caregivers. Thankfully, that has been changing a lot in more recent years. There is a long and growing list of churches and faith-based organizations becoming equipped to serve with individuals and families impacted by disability. There are also more and more counsellors specializing in caregiver concerns with increasing number. Some are equipped to treat trauma and grief too.

Cultural and practical progress is being made. And there is still much to learn.

The church and our families stand to gain so much from growing collaboration. Jesus promises richness will flow out of limitations.

2 Corinthians 12:9
The Lord said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”

1 Corinthians 12:22 and 25
Some parts of the body that seem weakest and least important are actually the most necessary…This makes for harmony among the members, so that all the members care for each other.”

Our families have important and legitimate needs for support. And, let’s be honest, we are a complicated bunch! My family, probably like yours, can be hard to love sometimes.

The church faces some legitimate concerns and limitations when it comes to serving us. Time and again, churches, leaders, and congregations fall short.

“Our brokenness and vulnerability as humans is universal; how it manifests itself is variable,” says Stephanie Hubach in her book Same Lake Different Boat about coming alongside people with disabilities. Stephanie adds, “Connecting to others in a condescending way is not an option. Intentionally associating with others because we can truly identify with their human condition is essential.”

Allow me to suggest we need to forgive our churches for disappointing us, not write them off and go elsewhere. Or worse, go nowhere. We need to patiently and graciously persevere in educating others, including our leaders and church communities.

Have you ever wondered what your purpose or mission was in life now that disability seems to have derailed your dreams? Well, this is part of it right here. Part of your purpose is to help strengthen the church. The mission will feel impossible sometimes. We don’t always get to like it. And if it was easily accomplished, God would have called us to something else. Just as your family needs you to embrace the mission of service in your home, God has great purposes for you and your family within the Church.

Part of your purpose is to strengthen the church.

Jesus doesn’t let the church off the hook though.

Stephanie Hubach challenges the church this way: “When we truly value the sanctity of human life, we recognize that it requires us to uphold and promote the image of God in each person—across the spectrum of life and in all the circumstances that life can bring…Disability ministry can be understood as a pro-life ministry in the fullest sense of the term.”

For all the ways God stands ready to release His power through communities of belonging, mankind will always fall short of our expectations. Habit #8 of caregivers with robust support systems reminds us: Adopt low expectations of the world — and out-of-this-world expectations of God.

Our families and the church must fight the injustices together with the of the fruit of the spirit. Our power comes from love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control (Galatians 5:22-23) that flow from the power of the Holy Spirit alive within us.

We cannot wait for the Church to perfectly meet our needs. 

Let’s embrace the right hand of God and BE the church.

Our stories matter and the work of the Holy Spirit is building powerhouses among us. While we’re following Jesus into our families and the world, God is shining Light on the value of all kinds of lives.

God is transforming individuals
and shaping generations.

SHARE THE MESSAGE: Your story matters — follow Jesus in the world with it!

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.

The Power of Love: A Caregiver’s Anchor Point

I remember a time when our family was getting ready to leave the house on vacation. I was the rather typical mom hurrying to finish all the packing which included my personal things, helping each of the kids make sure they had critical items, gathering all the many things Carly would need, and filling a cooler with food.

Even though there were added complexities and stresses from trying to make sure I was not forgetting anything (doing it perfectly and avoiding every potential pitfall of traveling with Carly’s complex needs), I believe the scenario was playing out quite like it would in any household when a family is getting ready to be gone for a stretch. So, it was quite a shocking wake-up call when one of our daughters reacted to my stress by screaming, “why do we have to be such a high-maintenance family?”

In that moment, it became clear to me that disability issues were starting to take over how our children saw themselves and their family. I think we were all letting Carly’s needs take over who we viewed ourselves to be.

We thrive when our personal and family identities are centered on being children of God.

Your circumstances and life experiences are shaping and influencing you. Those things may consume you, but they don’t define you. Disability is affecting your children’s experiences in a big way. It is influencing their character and perspectives. But it doesn’t define them as people.

Siblings of sisters and brothers with extra needs will grow up with unique and highly purposed perspectives. But no person’s greatest burden or virtue is being part of a family impacted by disability or even by parenting a child with special needs.

The source of your importance and value comes from your Creator who designed you with a unique personhood.

Is your identity anchored in being a child of God or being a caregiver?

If you have received the gift of salvation from your sins, then you are a child of God (John 1:12-13). That is the ultimate beginning, middle, and end of who you are. Society doesn’t tell you who you are. Your career or role in life doesn’t tell you who you are. Some disease or condition is part of you but not your ultimate defining reality.

God’s vision always goes beyond ours. We are often pursuing the renewal of our circumstances, but God is pursuing the renewal of our entire identity.

— David Lomas, The Truest Thing About You

If you rely on what you do or how you feel for a sense of value and importance, you will never know the fullness of life God offers or His peace that surpasses all understanding. Your fullness and peace will be limited to your circumstances or something you feel you’ve earned.

You are valuable simply because God says so. He calls you His masterpiece, not because of anything you’ve done to earn that favor — even how much you might have succeeded or failed at caregiving and parenting (Ephesians 2:8-10).

Peaceful and satisfied caregivers resist giving disability all the power over their mind, emotions and responses.

We are all powerless over certain areas of life and we need God’s help.

God redeems our weakness and sin. We can rely on His perfection and authority. We get to feel angry and intensely disappointed. But our emotions and how we respond to them fall under the care and direction of the One who designed us and authorized our circumstances.

God has the final say about where our power comes from.

The truest thing about you is that you are designed by God for relationship with Him. He made that possible at great cost. 

Jesus lived, died and rose to eternal life to set you free from being enslaved by your challenges.

Jesus didn’t promise a life without trouble.

He promised peace to your soul, fullness of life on earth, and eternal life with Him in heaven.

We need to be well fed and well led ourselves in order to feed and lead our families well.

Caregiver, pay close attention to keeping yourself spiritually fit. J.R. Miller said, “The true goal of life is not to be great, or to do great things, but to be just what God meant us to be.”

The focus of our respite strategy should be clinging to the Vine. Drink deeply of any scripture, worship song, friendship, prayer and other reminder that you are cherished by God. Then reassure your spouse and children that loving the One who is love is the single greatest thing any of you will ever do.

Have you wondered who you were meant to be or what your purpose is? Don’t let the enemy bully you into thinking that you are disabled from fulfilling your purpose because of disability. Don’t let society shame you because you’re not producing something that looks like what others are doing.

You are caring for a complex family. And you are shining the Light of Jesus into that situation with every loving breath you take of the Holy Spirit. Nothing you do is insignificant. Your days may feel tedious and mundane, but it all matters in this unexpected mission into which you’ve been called.

Ginny Owens, an award-winning songwriter and friend of this ministry, writes in her book Singing in the Dark, “The goal is not for us to got out and make sure that the whole world know who we are and what we do. The goal is to do what he’s called us to do in the place and the moment where we are.”

Caregiver, you and I are in a life-long process of learning. We are learning to love and serve in incredibly stretching circumstances. Have compassion for yourself and your own limits. Trust your Heavenly Father who offers a profound love. The world offers nothing to compare with it.

Receive that love.

Rest in it.

Then follow Jesus into the world with it.

John 15:9-17
“I have loved you even as the Father has loved me.
Remain in my love.
When you obey my commandments, you remain in my love,
just as I obey my Father’s commandments and remain in his love. 
I have told you these things so that you will be filled with my joy.
Yes, your joy will overflow! 
This is my commandment: Love each other in the same way I have loved you.
There is no greater love than to lay down one’s life for one’s friends. 
You are my friends if you do what I command. I no longer call you slaves, because a master doesn’t confide in his slaves. Now you are my friends, since I have told you everything the Father told me. 
You didn’t choose me. I chose you.
I appointed you to go and produce lasting fruit, so that the Father will give you whatever you ask for, using my name. 
This is my command: Love each other.”

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.

Who or What Holds the Power in Your Caregiving Family?

There is so much to do! Are you with me?

In the last month, I’ve spoken with at least a dozen parents who are deep into coordinating fall transitions for their children, and they are exhausted. I am hearing from young moms whose children are back in classrooms for the first time in more than a year. I am hearing from older parents faithfully seeking work, hobby, and entertainment activities for their adult children with disabilities who need appropriate or adapted opportunities to stay meaningfully engaged in their communities. And virtually every family living with disability is desperately in need of more support staff which, for some, also includes home nursing care.  

These parents are not just logistically entrenched in the issues of the day, they are significantly emotionally invested.

A caregiver’s work is never complete. And every household has its to do list. But when disability is part of a family, that list is long and growing. It rarely shrinks. As soon as time, energy or finances allow for some catching up, our child invariably faces another challenge, a caregiver gets sick, a nurse quits, or somebody had a long night and needs recovery time. With constant caregiving demands and interruptions, our efforts can seem to be in vain.

At our house lately, there have been medical and behavioral issues to navigate (managing side effects, keeping careful logs, discerning adjustments) and checklists to create (to keep respite providers trained and updated). We also need to figure out winter storage of Carly’s adapted bike so that both cars will fit inside.

Meanwhile, we are tag-teaming constantly just getting dinner on the table or a load of laundry in the washer. One minute Carly is a real charmer, the next, she is marching emphatically around the kitchen scavenging for any food or taking off her clothes when our backs are turned. It’s exasperating!

Just a few minutes ago while I was in charge of supervision. Carly was meandering between a movie and her toys while I was writing this blog and Larry was taking a nap on the couch. Suddenly she sat down on Larry’s face. Thankfully, his glasses were spared — this time — but I had chosen multi-tasking over attentive engagement, and it came with a cost. Ample doses of exasperation all around.

The need for hyper vigilance is physically and emotionally exhausting. Each of us has times when we just want to hide. My own coping mechanisms feature creativity, organizing, updating, and purging. For example, I am anxious to purge a billowing closet of toys, equipment, media and records reflecting her 23 years with Angelman Syndrome.

RELATED: Tips for the Task-Oriented Caregiver

Especially when Carly’s complex needs feel most out of my control, I am vulnerable to grasping at projects like this.

The truth is, there is a grip of disappointment and a sense of entrapment that get a hold of me. I rely on the project to restore my sense of being in control. At least initially, a tidy and simplified closet (or finished blog) creates the illusion of an ordered, predictable and, dare I say, “normal” life. I might hope that emptying the closet will lighten the load of caregiving responsibilities too. In any case, I convince myself that the project is important enough to justify pausing other responsibilities.

Sometimes I am looking for a distraction from the emotional intensity of hands-on caregiving. But what if the thing I am getting distracted from is freedoms and fullness in life that come from relationships and processing of my emotions in a healthy, complete fashion?

Projects themselves are not bad or wrong. The problem lies in how much power I give them over my inner peace. My efforts may be well-meaning, but my focus is not always well placed. Very often, my projects are just an attempt to run away — from feelings, questions, doubts, sorrow. That’s not really coping. That’s just hiding. That’s just a band aid for the real heart problem I’m having.

Caregivers who are suffocating in emotions might try to self-medicate their suffering. I am tempted to rely on projects to numb or relieve feelings of overwhelm, exhaustion, anxiety, frustration, or grief. Where to do you run for relief?

Lisa Jamieson

Projects can be an attempt to escape, or they can be a way to get some distance from the situation for the purpose of intentionally and prayerfully processing my emotions and letting God mold my perspective. There is a radical difference there. I have to get honest about what needs I’m really trying to meet.

It’s not about the closet.

Our real needs are to yield control and rest in a secure identity.

It helps me to take a daily step back and ask: who or what holds the ultimate power in my life? Is it my lists? Is it my need for closure? Is it my need to feel known and understood? Is it my career? Is it Carly? Is it Angelman Syndrome? Is it grief or disappointments?

The other question I ask myself: who do you think you are? Is disability a life influencing factor or am I becoming dependent on disability to define my importance, sense of value, and personal boundaries?

My project focus becomes intense when my life and mind are revolving around Carly and her needs. That’s giving Carly and her situation a lot of power. That’s giving my projects a lot of power. Matt Maher’s song has been very helpful for me in refocusing.

LISTEN: Run to the Father

What are you building your life and family around?

Disability and caregiving do not define anyone’s existence. The Creator decides why you and I exist and tells us how valuable we are (Psalm 139, Ephesians 2:10). If disability is stripped away (and it will be, sooner or later), what will be left if we are not building our families and household systems on the foundation of Christ and His kingdom?

Friends, let’s run to the Father and fall into the grace of His family system.

Ephesians 2:18-21
Now all of us can come to the Father through the same Holy Spirit because of what Christ has done for us…no longer strangers and foreigners. You are citizens along with all of God’s holy people. You are members of God’s family. Together, we are his house, built on the foundation of the apostles and the prophets. And the cornerstone is Christ Jesus himself.We are carefully joined together in him, becoming a holy temple for the Lord.

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.