Creating Space for Special Siblings

Two in every seven families has at least one member with a disability (US Census Bureau 2007). And an April 2018 report from the Centers for Disease Control and Prevention indicates that 1 in 59 children has been identified with autism spectrum disorder (ASD). These are just two statistics that suggest our churches are filled with individuals from families experiencing special needs—or they should be if they are reflecting the demographics of the communities around them.

Among those affected by the challenges associated with disability are the siblings. It’s fair to say that many special-needs siblings are bringing a myriad of spoken and unspoken needs to their parents and their churches. And this presents us with unique opportunities to connect with siblings in ways that ripple positively into their families, throughout our faith communities, and the world.

CONSIDER SOME EXAMPLES:

Nick’s brother has autism and is nonverbal. During Nick’s wedding vows, his brother started making noise. The pastor pressed on while many wedding guests resisted the urge to stare. A caregiver whisked Nick’s brother out of the sanctuary as quickly as possible. The next day, Nick expressed regret about how the situation was handled. To the surprise of his family, Nick had wished his brother would have been kept in the service, even if it was disruptive for others.

Lauren’s older sister has Down syndrome and loves to dress up. On the day of Lauren’s wedding, her sister was over the moon with excitement. When it was her turn to walk down the aisle with her groomsman partner, Lauren’s sister made a cute scene that guests will never forget. Lauren wrestled privately with resentment. As had happened so many times before, Lauren felt her sister had stolen her own special moment. 

Liz’s brother has cerebral palsy. Liz’s mom told the children’s pastor that Liz will be her brother’s buddy so he can participate in Vacation Bible School. Liz is enthusiastically helpful with her brother but sometimes wishes she could interact like a sister instead of a caregiver during church family activities. Liz’s mother hopes her daughter will attend summer camp with her sister one day too. It gives her great comfort to know her daughter is so experienced with her sister’s needs.

Jamie’s sister came bounding into the youth group room ready for her favorite part of Friday nights—the worship. In between dancing and bouncing, she was giving hugs and would occasionally drool on other students. Jamie is embarrassed by her sister but wishes her friends were more accepting. It gets tiring for Jamie to have to explain her sister’s behavior with friends at school, when visiting her house and at church. Sometimes she wishes the youth leaders would speak up and encourage more understanding so Jamie wouldn’t always be the one having to give the education. 

Marta remembers enjoying youth group where she could have fun with her friends without thinking about the complexities of life at home. Nobody ever talked about her sister there and Marta was relieved she didn’t have to answer a lot of questions like she did at school. She liked that she wasn’t treated differently at youth group because she had a sister who was frequently hospitalized and needed constant attention at home. 

Danielle is the third generation in her family to attend Trinity Church. She enjoys the weekly women’s Bible study small group while her new baby is in the nursery. Lately, she’s been struggling with how to ask for prayer for her family because the situation with her adult brother is growing complicated. He acquired a brain injury after an accident during his toddler years. The fact that her parents are aging caregivers is weighing on her mind. She wants to request prayer but respects her parents’ desire for privacy. 

WATCH RELATED: Guests Erin and Lisa Jamieson at April 2018 Roundtable on Siblings

Did any of these sibling reactions surprise you?

In circumstances like these, how might parents, church leaders, friends, extended family, and others come alongside the special-needs siblings and communicate most effectively with them?

It’s worthwhile for us to explore some “best practices” for communicating with those who have a sibling with special needs.

  1. Be willing to initiate conversation and ask questions. Step into communication with intention. Your interest and willingness to engage in caring conversation matters.
  2. Make all topics and needs safe to express. Siblings of someone with special needs may feel their wants or needs have to take a back seat to the needs of others in their family. They may not feel empowered to advocate for themselves. Someone who has a sibling who is non-verbal may be accustomed to expecting more intuitive communication. As a result, they may not be inclined to voice their needs and hopes or be in touch with their feelings. They may take for granted that others will know what they want.
  3. Be careful about making assumptions. Get to know what really matters to a sibling. Different families and individuals will have their own unique preferences, even in similar situations. Furthermore, situations and preferences can change. You won’t necessarily be able to anticipate what they want without a deeper understanding of their situation and the family dynamics involved.
  4. Remain sensitive to the ebb and flow of stages and seasons. A sibling’s need for information and understanding may vary depending on their age, maturity and changing circumstances. For example, times of transition (e.g., a move up to youth group, a graduation, a move out of the home, a wedding, the death of a parent) are good times to ask questions and learn what may be helpful. No matter who is facing the transition in the family, it affects each family member differently and disability often adds layers of logistical, emotional and relational complexity.
  5. Commit to persevering prayer. Individuals in a family with special needs are often hesitant to ask for prayer. For example, many worry about sounding like a “broken record,” alienating people or wearying friends with the details of their challenges. Keep an open invitation for prayer requests. Those friends who ask for updates and follow through are highly valued.

Fostering great communication with the siblings of people with special needs can have far-reaching benefits for them, for their family, for you, and for your entire church.


RELATED: Special Needs Siblings Will Make Remarkable Future Leaders

This post is adapted from an article by Lisa Jamieson that first appeared in the Key Ministries blog April 15, 2018.


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. She leads a weekly online discussion group welcoming caregivers in families living with disability. Lisa and her husband, Larry, are co-founders of Walk Right In Ministries, a non-profit organization building faith and community with special needs families. They live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome.

We Bolster Each Other’s Faith

God delights in any faith we can offer Him with our aspiration to grow. But adversity can test our faith. Oh, how being a caregiver for a child with disabilities has tested my own faith!

The testing of your faith produces perseverance.
JAMES 1:3

Growing in faith is triggered by various things: prayer, reading scripture, seeing God’s power displayed around us (in nature, in people’s lives, in our ability to do things beyond our own capabilities, etc.). For many of us, growing in faith comes by doing life alongside others who want to grow too.

As iron sharpens iron, so a friend sharpens a friend.
PROVERBS 27:17

There have been several defining moments for me in discovering that my growing personal connection with God has power to influence the faith of others and the depth of my relationships with them. I want to share a personal example here in hopes that it will help you catch a vision for the power and potential there is in sharing your own faith story, when opportune moments present.

It was about this time of year in 2009, and I was sitting in a cafe waiting to meet a woman I did not know. She had contacted me after reading my family’s story in the newspaper. I was a little nervous. I was also feeling humbled realizing that someone might have been moved enough by something of our story to actually ask for a personal meeting. I felt very self-conscious. I now had a somewhat recognizable face. She would find me. Meanwhile I peeked around the room knowing only that I was meeting a mom who had two children in serious pain.

I prayed. I wasn’t sure what this woman wanted from me and I was quite certain I had very limited resources to help. Silently, I asked God to put His words and wisdom and protection over me.

Two and a half hours later, we hugged and cried and thanked each other for things like transparency, courage and shared faith. Even though we both started that meeting feeling unsure about what might happen, God made much of the little each of us brought to the table. This was a mom whose heart was broken over a disease her two teenagers carried, over the burden of chronic pain they endured (that she had tried to fix for over two very long years) and over the toll it was taking on her family.

I listened. I teared up a couple of times. I struggled not knowing what to say and felt  overwhelmingly inadequate. Once, I prayed out loud for a moment (when I sensed a desperation in both of us for more of God). A few times I tried to answer questions based simply on my own discoveries from God’s Word. Once or twice, I interjected words of affirmation as I sat there recognizing myself in her story. I was inspired by her endurance but ached seeing how lost and bitter she felt.

So maybe you understand why I was shocked when we stood after all of this and she hugged me, then looked me square in the eye before making a profound statement:

“I have heard the things you said to me about God a thousand times before. I’ve heard them from my pastors. I’ve heard them from friends. But I never received them like I did today. I guess I needed to hear them from a mom who knows my kind of pain. You know what it’s like to watch your child in pain and be able to do nothing to fix it. I guess you have a credibility with me that I needed today. For the first time in a very long time, I’m not angry with God. I feel hope. I can do this and God is near. I cannot thank you enough.”

YOU will be the one to encourage and inspire
some people toward greater intimacy with God
with an influence no one else will have.

Well, let me tell you. That moment was a marvelous gift to me. That moment assured me once again that God shakes the earth when we let our lives and our faith intersect with others. He doesn’t need my story or yours published in a book, a newspaper or a blog to make an impact. God provides platforms every day in clinic waiting rooms, on golf courses, in grocery aisles, in coffee shops, at water coolers, in classrooms, around dinner tables, in bedrooms, in dance and soccer carpools, on hiking trails, in campus hallways—you name the venue. There is great power in resonance.

Our own unique platforms and moments of opportunity will reveal themselves unexpectedly. We need to be ready to toss seeds of encouragement, hope and life into soil that is soft and ready to be tilled.

We must keep asking God to publish Himself in our lives as well as on our hearts and lips with things like compassion, enthusiasm, humility, expectancy, generosity, transparency, authenticity, vulnerability and a focus on Christ.

“May my lips overflow with praise, for you teach men your decrees.”  Psalm 119:171

This post is an adapted from my book Living Your Glory Story. An electronic copy is available for download in the WRIM Shop.


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 alongside families living with disability.

An Uncomfortable Family Update

Good heavens, this is not how I expected to title my first blog of 2022! Yet, alas, I’m online today for some “real talk” with friends who will “get it.”

Our daughter Carly is 23 and has Angelman Syndrome. Her needs are complex and relentless. We have been extremely fortunate that she receives government benefits that include county waiver funding. In other words, we have budget to hire caregiver support and respite staff. But having funds available has, for a long time, not equated to finding people who actually want a job.

As a result, we have been significantly and desperately understaffed for most of the last four years. This is a common reality for families hit by the ongoing crisis of a nationwide caregiver shortage. (Caregiver shortages reached an extreme crisis in the US long before the pandemic of 2020. And the situation has only worsened since then.)

I can’t entirely complain. We’ve had a remarkable situation compared to most. The one staff person we currently have has been working full-time weekdays with Carly since soon after she completed her public education and transition program almost 3 years ago. She has become a dear family friend.

Covid POD girls 2020

During the summers and when Covid shut down universities, we had extra help from a second long-time team member who came back to work while studying remotely. Still, Carly’s needs are 24/7 and our ongoing efforts to recruit support (paid or volunteer) has been accompanied by the sound of crickets. Virtually no response to ads at all for years.

Throughout this time, we have been questioning a lot of things about how our lives and ministry need to change if these circumstances don’t change. Again, it’s been very hard to hear or discern what God would have us do. We pray repeatedly:

Lord, show us the next best step.

The lives of families like ours (consumed by disability issues) can be messy and chronically strained. We are constantly learning how to experience God’s presence, purpose and peace while simultaneously living in the midst of challenges that pull us toward our wits end. We’re left, daily, with questions about how to endure the moment and the future.

Now what?

Last week, we received news that threw our family into a whirlwind of learning a deeper trust in God—yet again. Carly’s amazing weekday caregiver is getting married at the end of this month. With many upcoming changes in her life, she is going to transition from full time to part time.

I will confess, Larry and I are struggling on several levels and trying to sort out what to do next. We are discouraged, angry (with God mostly), confused, tired, and overwhelmed. Circumstances like this trigger grief, fear, frustration, fatigue, hurts and hopes along with gratitude and lots of questions.

What are we doing about this?

The short answer is, “we don’t know yet.”

The longer answer is this: while we know more every day about God’s promises and character, we still know very little about His ways.

We are waiting on Him while we pray (a lot). We are also trying to give each other space to grieve and process; have lots of heart-to-heart conversations; journal about many feelings, thoughts, ideas, resonating scriptures; ask for counsel from WRIM’s Board of Directors and friends; learn from others who have walked this road ahead of us in wise and godly ways; keep our minds saturated with truth and gratitude; experiment with solutions; anticipate the surprises of God’s love (they will keep coming); continue pursuing a myriad of recruiting strategies; take space to breathe and slow down (it’s helpful and hopefully only temporary to put an autoreply on my email indicating adjusted office hours); the list goes on and on.

In any case, we will hope for the best, but plan for the worst-case scenario. You might say that motto is a matter of survival around here.

“We do not know what to do, but our eyes are on you.”

2 Chronicles 20:12

How can you pray for us?

We surely do invite you to pray with us. And as you do, please pray for other families impacted by disability as well. Anything you might pray for the Jamieson’s will quite likely be a prayer countless others around you need lifted faithfully before God too.

Thank you for praying with us for…

  • God’s generous, timely, and well-fit provision of care support for Carly
  • Carly’s adjustment to changes in schedule and people — inner peace for her as the Holy Spirit communicates uniquely with our precious daughter
  • That Larry and I would respond to all of this with trust, peace, hope, wisdom, discernment, and patience
  • That God would give Larry and I supernatural spaces of time, energy and health in caring for and enjoying life with Carly
  • Quality sleep for all three of us
  • Clarity about priorities, discipline in scaling back, trust in and cooperation with the Almighty Gardener who will prune us well (at least until we have more staff on board and trained, and possibly beyond that too)
  • 2022 planning as it relates to personal life and WRIM ministry affairs given the staffing dynamics and the labor market
  • Careful listening to how God may want to use this current adversity to guide our hearts and lives, both in the short-term and the long-term — learning to yield to Jesus’ easy yoke in new ways
  • Peace and trust in Jesus for our two oldest daughters — Alex and Erin — who live outside the home while caring so deeply about what is happening here

Friends, we need to plead with heaven together for families, ministries, and churches in this respect. There is an adversary hard at work trying to steal momentum in disability ministry on many fronts and around the world. Still, what the enemy means for evil, God uses for good (Genesis 50:20). Always. I know we can trust that.

You can trust that, too.

I can already see the Gardener doing some painful but valuable pruning. Lord knows, we have prayed for clarity about priorities for so long and now we are finding some by being forced into certain decisions while taking others on sheer faith. My family will be working on that “one step of faith at a time” mindset and prayer. 

Since I blogged recently about having worship playlists, I’ve been asked about songs I’m listening to. I can tell you that the new Homecoming LIVE album has been on repeat at our house for weeks. And Kristene DiMarco’s Wherever You Lead has been the voice of my depths with Jesus the last several days.

LISTEN to the official Homecoming album playlist (Bethel Music) here.

THANK YOU, friends! Larry and I find great comfort in knowing we are never alone in this. Jesus is our ever-present Advocate and Companion. But He has also given us this community — a profound gift!

“The joy of God’s people is not determined by their struggles but by their future destiny.”

Jon Collins of The Bible Project

Let’s talk about it.

If you’d like to join me and a few other family caregivers in exploring how to thrive with biblical life principles while wrestling with troubled waters of a special needs family, join us in this safe space we’ve created for such discussions.


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.

27 Gift Ideas for the Family Living with Disability

The holiday season is near. It is a time of year when stress, social isolation, and grief can weigh on caregivers and their families. Each family member — parent, grandparent, child with disabilities, sibling — is uniquely impacted by the disability issues involved.

Let me admit from personal experience that families like mine can be hard to know how to help. My own family realizes that our situation feels complicated to us and sometimes even more intimidating to our friends or family who desire to help. We often don’t know how to let others support us.

My hope is that those people who genuinely desire to love and serve a caregiving family will prayerfully read this whole article then take a step toward that family in any way at all that they may feel prompted. Because your step matters. It makes a difference. It can change the trajectory of someone’s day. It can stir confidence. It grows their sense of belonging. It builds their hope.

Have you wondered what kinds of gifts would bless a family facing a complex or long term caregiving scenario?

Consider the priceless and profound gift of encouragement. It is a gift that fits the whole family. While there are many kinds of physical gifts that would also benefit a family living with disability or other special needs — gift cards for groceries, gas, clothing, and restaurants being top of the list for many — the gift of encouragement is often the one thing that is most irreplaceable and far-reaching in its benefits.

You may assume that the caregivers in your life hear affirming, life-giving words often. That is probably less true than it seems. People may think warm, positive, admiring thoughts but most of those thoughts are not spoken out loud. Just think, for a moment, about how often you admire or appreciate someone compared to how often you actually voice those words of affirmation to them.

Proverbs 16:24
Gracious words are like a honeycomb, sweetness to the soul and health to the body.

Your words are powerful. Your spoken words are powerful, and your written words are powerful. Someone can re-read and savor your email or handwritten note for days and weeks. A heartfelt and specific sentence or two from you may be stuck to their mirror or refrigerator and spur them through unseen dark days for years to come.

So, whether you make a phone call, visit a friend, or write a note, let this list offer some inspiration as you prayerfully and generously share the love of Jesus during this cherished season — and beyond!

  • Be the initiator of conversations, meetings, and other touchpoints (e.g., occassional text messages). Caregivers are often required to be the coordinator of extreme logistics and most will appreciate your reaching out with perseverance and willingness to be the coordinator of connections.
  • Make a phone (or FaceTime or Zoom or other virtual) call just to say hello, check in, and express love.
  • Send a text, write an email, handwrite a note, or create some other tangible type greeting.
  • Schedule a visit — it may be easiest for caregivers to have you come to them. They may prefer to have the break away from home by meeting you for coffee yet and logistics of making that happen may be more difficult that it seems. Never be afraid to ask if you can come their way or meet in their own home.
  • Acknowledge the caregiver’s unique strengths.
  • Honor the caregiver’s steps of faith.
  • Point out areas where caregiving team (family) works well together.
  • Maintain a gentle and warm tone of voice.
  • Show appreciation for the primary caregiver’s efforts to lead and empower the disabled person’s support team and family.
  • Show appreciation for each employed person(s)’ efforts to provide for the family financially.
  • Affirm the value of the primary breadwinner’s role.
    NOTE: Primary breadwinners will commonly experience guilt for having the opportunity to “escape” the demands of caregiving for large periods of time. They may also find it hard to experience a satisfying grief process because their time and mind must so often be focused elsewhere.
  • Affirm caregivers’ efforts to take care of themselves and each other.
  • Validate the caregiver’s need for rest.
    NOTE: Be sensitive to the fact that taking breaks is nearly impossible for some caregivers. Many find it difficult to give themselves permission to take breaks. Those caregivers may greatly appreciate knowing that you esteem them for finding ways to rest and making it a priority. They may also appreciate a collaborator who will help them “think outside the box” about ways they can get some respite — whether very short breaks or longer ones.
  • Encourage caregiver self-advocacy and healthy boundaries.
  • Don’t make the caregiver feel analyzed or evaluated (especially when he/she is trying to self-advocate).
  • Express your admiration for specific ways the family members “have each other’s backs.”
  • Give caregivers permission to grieve. Honor each person’s unique grief process.
  • Ask the caregiver how you can pray for their situation and relationships.
  • Pray with the caregiver. Write out a prayer to share or tell them how you pray for them and their family. Be specific.
  • Validate the stabilizing impact their faith has on them and their family.
  • Acknowledge the caregiver’s stress.
  • Acknowledge that each family member has their own unique concerns.
  • Ask questions about the parent’s goals and vision for their child. Empathize when that may be unclear/confusing/ambiguous.
  • Call out (name) and affirm whatever seems clear about the caregiver’s vision. (This can help them stay focused too.)
  • Remind the caregiver of ways God has been faithful to them/their child/their family.
  • Reassure the caregiver about where you stand in offering practical help. Be clear and direct. Don’t over promise; be true to your word.
    NOTE: It can be hard for caregivers to know where you stand in supporting their family. Supportive family members may want to help but feel inadequate or intimidated. Your hesitation may be interpreted as lack of interest or rejection. It can be unsettling for people who don’t know how to interpret the dynamics of the situation. Give grace and communicate as clearly as you can within the boundaries of your privacy and limitations.
  • Invite caregivers into safe spaces to express their anger and hurt.
  • Whenever possible, let the caregiver have the last word.

Now, just in case twenty-seven ideas wasn’t inspiration enough, there are 100+ More Ways to Support Caregivers by Sharing the Care offered by the Alzheimer’s Association and applicable to a broad range of family situations.

Thank you for taking time to prayerfully consider ways you can come alongside a friend or family facing this season with challenges.

RELATED: Christmas Music to a Special Needs Parent’s Ears

RELATED: Tips for Caregivers on Feeling Valued and Competent


Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families.

8 Truths About Disability & Relationships

The Bible provides many anchoring truths to guide us and spur us on in life. Caregiving families see those truths tested with extraordinary perspective. We also get to see — up close — how a foundation in certain truths stirs our compassion for each other, bolsters our sense of purpose in suffering, and reassures us that each person in our family is celebrated by God.

Each and every one of us is one hundred percent unique,
purposed for God’s kingdom,
and made for belonging.

Consider how our lives would be transformed if we really believed this one thing about ourselves and each other!

Let’s take a closer look at this foundational belief through the lens of eight truths about disability and relationships. By transforming the way we think, God’s truth has power to shape the way we live. By shaping the way we live, God’s equips us to cope with challenge or crisis. As we learn to cope — by the power of the Holy Spirit — we thrive in relationships with God and others.

God's good design is reflected in every person.

God’s good design is reflected in every person.

The fingerprints of God are on every person and circumstance. No matter how complex, senseless or hopeless a situation looks, every person has value and carries the image and power of Christ in them with the potential to contribute God-purposed things to this world.

Exodus 4:11
Then the LORD said to him, “Who has made man’s mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the LORD?

Psalm 139:13-15
For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.

Suffering and weakness do not negate the value of life.

Suffering and weakness do not negate the value of life. 

Our culture hates inconvenience. Jesus welcomed interruptions and weaknesses as Divine opportunities. His value system is quite unlike the world’s. We worship knowledge and intelligence. God values wisdom over knowledge, and character over intelligence.

Our personal worth, our value to God, even the degree of our sin are not dependent on our abilities or anything we can earn. That means we are completely free of responsibility to earn God’s favor. All that God requires of us is faith. Even faith that is metaphorically as small as a mustard seed — one of the smallest seeds in the plant kingdom— is enough for Him.

Romans 3:23
All have sinned and fall short of the glory of God.

Ephesians 2:8-9
God saved you by his grace when you believed. And you can’t take credit for this; it is a gift from God. Salvation is not a reward for the good things we have done, so none of us can boast about it.

1 Corinthians 12:22
The parts of the body that seem to be weaker are indispensable.

God is not limited by anything.

God is not limited by anything.

Issues that are so complicated for us are really very simple to God.

We scratch our heads (or pull our hair) over suffering that seems senseless. We wrestle with dilemmas about everything from medical ethics to school services to whether to accept governmental disability benefits. We train ourselves in different ways to pray for healing that might be more effective. We wait, often for a very long time, for answers to our questions and God’s response in areas where we are powerless.

In his book, Why the Church Needs Bioethics, John F. Kilner offers relatable encouragement, “Godly waiting reorients human beings from demanding that God perform, to prayerfully declaring that God’s character is holy, good, just, full of mercy, abounding in grace, and the source of all comfort. God’s gifts are good, both to desire and receive. The human heart tends to strive stubbornly for its wishes rather than rest in the contentment that flows from acknowledging God’s faithful blessings.”

Isaiah 45:7
I form light and create darkness, I make well-being and create calamity, I am the LORD, who does all these things.

Jeremiah 32:27
“Behold, I am the LORD, the God of all flesh. Is anything too hard for me?

Disability frees a person to multiply grace.

Disability frees a person to multiply grace.

The culture values self, comfort, happiness, ease and an entitlement mentality. We feel no one deserves to suffer. Yet suffering positions us to give and receive unique and good gifts from our Heavenly Father and each other.

Disabilities help us appreciate different values like slowing down and unconditional love. The world teaches self-reliance. The Bible teaches God-reliance. There are times when the hardships of disability stretch us to trust God more. Over time, we become increasingly reassured of His faithfulness. We learn how freeing it is to surrender our weaknesses to the God of the universe!

Those who are most dependent are most freely used by God as a means for grace. My daughter with Angelman Syndrome is not limited by the need to work eight hours and tend to a home. She is entirely available to bring joy and love to others in a way that is profound and unique to her.  She teaches us humility in caregiving. She shows us how to persevere despite external obstacles and internal limitations — hers, and our own. She gives us a living picture of God’s unconditional love and challenges us to love one another well.

I must admit, my husband and I have often wished we could protect Carly’s siblings and others from the “burden” of her care. Yet we are reminded that the promise of God’s grace is just as much opportunity for them as it has been for us. 

James 1:2-4
Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.

God is first and foremost concerned with our hearts.

God is first and foremost concerned with our hearts.

Disability, suffering, and weakness remind us of the severity — and very broad reach — of the impact of Adam’s sin. We see in Mark 2:5 that God is generally more interested in changing people than changing their circumstances.

Mark 2:5
And when Jesus saw their faith, he said to the paralytic, “Son, your sins are forgiven.”

Our relationship to God and others is what matters most to Him. And God will use whatever method he needs to in order to accomplish that intimacy. This means that God’s response to our requests for healing, to our weaknesses and sin, and to all of our concerns in life, always begins and ends with how our circumstances work to shift our focus and affections toward Him and then others.

Jesus said the two greatest commandments were to love God and love each other. We were told to carry our crosses instead of seeking our own comfort or happiness. Suffering makes us long more for heaven and less for the world. It encourages a Kingdom perspective. Others will see that God Himself is our treasure.

God desires to restore us to right relationship with Him and others.

God desires to restore us to right relationship with Him and others.

God loves us even before we love Him. He created us and wants to be intimately near to us. Our lives will not be untroubled, but they will be deeply satisfying and life-giving when our choices, attitudes and beliefs drive us toward God rather than away from Him. Until we choose to receive the generous love Jesus offers, we will miss out on the richness of life and relationships.

In his book Disability and the Sovereign Goodness of God, John Piper offers this challenge: “The truth is that suffering can only have ultimate meaning in relation to God. Jesus says that the purpose of blindness is to put the work of God on display. This means that for our suffering to have ultimate meaning, God must be supremely valuable to us. More valuable than health and life. Many things in the Bible make no sense until God becomes your supreme value.”

Romans 8:26-28
We do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what the mind of the Spirit is, because the Spirit intercedes for the saints according to the will of God. And we know that for those who love God all things work together for good, for those who are called according to his purpose.

1 John 4:19
We love each other because he loved us first.

If you are ready for a reset in your relationship with Jesus, watch here.

God transforms people and churches when we engage with each other through the adverse circumstances of our lives.

God transforms people and churches when we engage with each other through the adverse circumstances of our lives.

Christ-following families living with disability know the transforming power of doing life together in diverse community. Our own families are a picture of this on the smallest scale. Imagine what the family of God would look like if we learned to live out that same kind of community on a large, Kingdom-minded scale!

It is really really important for leaders in the Church to recognize and embrace this truth too. Individuals and families impacted by disability need to know they belong. As the Church, we need to get engaged with each other amidst challenges. But we don’t do this just because we are really nice people. We need to get involved in messy lives because God tells us to, because Jesus showed us how to, and because the Word promises that God will glorify Himself and give good gifts through unique people and unusual circumstances.

Godly communities make the compassion and truth of Jesus easily accessible to all who seek it.

Godly communities make the compassion and truth of Jesus easily accessible to all who seek it.

Making church and church programs accessible is a matter of eternal salvation for any person. This certainly includes people with disabilities and their families.

We have an opportunity to defend life. This opportunity has nothing to do with anyone’s ability. It has everything to do with making the Good News of Jesus known to all. Jesus is the Giver of life and the Way to life. He is the Giver of all good gifts. He witholds no good thing from those who walk in faith (Psalm 84:11). We are called to follow in that Way — to walk in that Light.

1 John 1:5-7
This is the message we have heard from him and proclaim to you, that God is light, and in him is no darkness at all.If we say we have fellowship with him while we walk in darkness, we lie and do not practice the truth.But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus his Son cleanses us from all sin.

Of this we can be sure:

God made each of us for a purpose and is going to help us in that purpose.


SHOP FUN MERCH: Find meaningful 100% UNIQUE products at the WRIM Shop.

Find these mugs and more at our online WRIM Shop!

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!

8 Habits of Caregivers with a Robust Support System

A strong and healthy support system is crucial for caregivers. Robust supports will reduce stress and positively impact physical health as well as mental, emotional, and spiritual wellness. In a great many cases, a strong support system even impacts a family’s financial health by ensuring a caregiver’s employability outside the home.

You may feel 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. You will benefit greatly by being proactive in this area. Use the energy you have in those stronger days to be intentional and forward-thinking about how to foster the kinds of supports you’ll need for the harder days.

Caregivers can develop habits that optimize their social supports which include emotional, practical, informational, and attitudinal resources. Those you find listed here are meant to empower you, not intimidate you. After all, we’re all in a work in process.

Healthy momentum should be the goal, not perfection. Think of these habits as a guide rather than a destination. They aim at helping caregivers maintain satisfying progress and keep from getting stuck on the often arduous and lonely road of caring for a loved one with disabilities, medically complex conditions, mental health concerns or other special needs.

  1. Approach caregiver fatigue with a proactive mindset.
    When a loved one has disabilities or complex medical needs, caregivers tend to become very aware of their limitations, weaknesses, and weariness. Effective caregivers recognize they are vulnerable to battle fatigue and they work to stay ahead of it. They are intentional and strategic about cultivating a network of prayerful and supportive warriors.

  2. Maintain a clear sense of purpose.
    Identifying your purpose in being a caregiver will help you stay focused on your goals, be reminded of your value to others, enable you to remain compassionate, give you a reason to persevere, reassure you that there are brighter days ahead, and relieve you of guilt and fear about cultivating support.

  3. Know your unique strengths and learn how to stay in the groove of those strengths.
    Did you know there are things about you that make you uniquely equipped to care for others very well? A simple reflection on Psalm 139 quickly reveals that you are God’s work of art. Caregiving is a drain on your energy and will threaten your reserves. Just as your body needs fuel to stay alive and energized, your soul needs nourishment too. By recognizing and accepting you have certain strengths as well as areas of limitation and vulnerability, you can help you optimize those strengths and learn healthy, godly ways to stay out of the weeds of your weaknesses. It can also provide clues about opportunity areas for bolstering your support system with complementary strengths.

    RELATED: Check out our blog series about finding your caregiver “sweet spots.”

  4. Ask for help.
    You can’t assume people know that you need help or understand how they can contribute. Most caregivers with robust support have learned to be bold and courageous about seeking help. They have learned to delegate through clear and direct invitations.

    I learned a valuable lesson from one of my own adult daughters. She is involved with the national Sibling Leadership Network and explains that siblings want invitations to participate without any sense of obligation. When you make needs humbly and enthusiastically known without attaching them to expectations, those who offer to help can do so with genuine desire. Their commitment could be more long-lasting and more deeply satisfying for everyone.

    Ultimately, you’ll need to admit that you are powerless and need God’s help with circumstances, relationships, responsibilities, emotional health, and finding encouragement. In a future post, I’ll share more about how you can recruit help among friends, family, neighbors, church members, and professionals.

  5. Cultivate a cooperative environment.
    As a team is required, God also equips everyone on the team with unique ways and capacities for interacting with the others. Aim to optimize the strengths and capacities of each person within an atmosphere that features cooperation, compromise, and compassion. This will enhance motivation, build self-esteem, and bring personal and shared satisfaction.

    RELATED: Boosting Family Morale: Developing a Complementary System.

  6. Find your personal pace for an adequate rhythm of respite.
    Caregivers typically have very little discretionary time and few are able to get all the breaks they need. But some degree of adequate rest is essential for everyone. Your proactive mindset helps you learn to grab every opportunity for down time. But spontaneous moments of rest may rarely come. So, having planned breaks on the calendar can be powerful in helping 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. I’ll explore specific examples and ideas for your inspiration in a future post.

  7. Share everything with Jesus.
    Pray without ceasing and don’t be afraid to show your raw emotions with God. Open your heart and mind to the Lord. Explore your hopes, dreams, sorrows, disappointment, needs, challenges, failures, gratitude, joys, and pleasures. Everything. Sometimes there won’t even be words for the groaning of your soul. The Israelites understood this (Exodus 2:23). King David understood this (Psalm 13). God understands too. Be assured, words are not necessary. God hears our groans and sees us (Exodus 2:24-25). His help and hope are deeply personal (Romans 8:22-27).

  8. Adopt low expectations of the world — and out-of-this-world expectations of God.
    Managing expectations is a constant tension for caregivers. Even when your expectations are in balance, you will simultaneously feel confidently equipped for your responsibilities while utterly reliant on God (2 Corinthians 1:8-11). Only God is completely trustworthy and perfectly capable of meeting your needs. The people and things of this world can be a great blessing from the Lord but those provisions will always fall short of being enough. On some level, people will always disappoint you because you were made to need God most of all. Your ultimate hope and rest are in Jesus (Galatians 6:7-8).

The more you learn to walk in these habits, the stronger you will be against symptoms of battle fatigue. We’ll be exploring more about these habits in upcoming posts. I hope you’ll come back often, reflect, share your own “best practices”, and grow with us.

If you’re needing extra confidence, encouragement, or tools to assist you in finding your 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.

RELATED: Flourishing Families with Matt Mooney.


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.

Communication: The Avenue to Connection

I wrote a blog a few weeks ago about open communication in caregiving families and explicitly communicating our needs to those around us. As I was writing that blog, so many more thoughts flooded my mind about the importance of communication. There are so many simple things that we overlook as we try to connect with those around us. And isn’t our ultimate goal for connection?

Let me start by saying, I am not writing these blogs because I am good at communication. In fact, it’s probably more accurate to say that I’m writing these blogs because I’m often bad at it. But I guess when you hit a wall enough times, you eventually learn how to climb over it. 

Connection is a two-way street and we all know it takes two to tango. However, we only have power over our own personal behavior and growth. So, that is what my blogs will be focused on. I want to share on what each of us can do individually to make ourselves more available for connection.

One of the keys to a good relationship in any area of our lives is communication. It sounds elementary, but if we take a good look, many of the problems we have in our relationships come from a lack of good communication. As much as we all would like to believe we are experts at this and it’s everyone else’s problem [cough cough], let me suggest that we can always keep growing in this area. 

We have to learn to communicate because communication is an avenue towards connection. And our ultimate goal is connection!

If you want people to cross the line to connect with you, you might start by crossing the line to connect with them. The easiest way to connect is to be the first one to reach out the hand. 

I understand that this can require some vulnerability, especially if the relationship is already strained. But the way I see it, you have a choice. You can live disconnected from those you long to be connected with most, or you can take baby steps to change and build connection.

Connection has to be built and maintained. 

Have you ever been a part of a team at work, school, or church where you were assigned to a task with others and felt so connected to those people you were with that the task itself became simple? On the opposite spectrum, have you found yourself on a team that felt completely disconnected? Did you find it difficult to even want to do the task itself because of the team didn’t seem connected? 

I’m convinced you can do almost anything if you feel connected. 

As special needs families, we have no choice but to become a team. When that team feels connected, navigating the day-to-day care needs and high stress moments becomes a much lighter task. However, when that team feels disconnected, the day to day can start to feel very heavy. 

Let me emphasize a truth we all know in our hearts, but sometimes forget. 

We were not made to do life alone. 

Or another way to say it: We were not made to do life feeling alone.

So what if we made it our goal this year to become better connected at all costs? What if we took this time, while many of us are stuck in our homes, to reconnect with those right in front of us — to make protecting and cultivating connection within our families a higher priority than anything else?

My upcoming blogs will be dedicated to this subject, because I believe that the only way to thrive is to live connected! 

I hope that you’ll find helpful tools in my series and from all the writers contributing to the Walk Right In Ministries blogs. We hope something of our own stories, experiences, tips and encouragement will spur you on. I hope you’ll be inspired to rekindle connectedness with those around you and even think creatively about making some new connections! Time spent working on this is never wasted. I think we can come out of this most interesting season of our lives learning more about ourselves and creating new pathways to better things.

Let me encourage you. If you are discouraged reading this because of the state of some relationship(s) in your life, let me tell you something. No relationship or situation is too far gone. Connection can require intentionality, forgiveness and patience. But it is never too late to start building something together. The key is just to start!

So let’s start together. 

Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.

ISAIAH 43:18-19

Erin is a singer-songwriter and worship leader. Her songwriting, blogging, and speaking is often inspired by challenges and insights she experienced growing up in a family affected by disability. Erin serves with Walk Right In Ministries speaking on special sibling issues and assisting with social media. She has also served frequently in her community and home church as a worship leader. 

Erin earned her Bachelor of Arts Degree in Songwriting at Belmont University in Nashville and currently lives in California where she completed three years of study at the Bethel School of Supernatural Ministry. Her latest CD Come Alive (released 2018) and is available on iTunes, Amazon, Spotify, YouTube and other streaming services.

Find out more at www.erinjamieson.com.

Tell Us Your Ideas!

We’re in the very early stages of planning a virtual event (probably a fundraiser with a concert) to happen during late January or February 2021. Our first meeting to begin dreaming and planning is scheduled for next Monday night on Zoom —

Monday, August 17th at 7:30 pm.

Would you consider coming to this meeting to help us dream and plan?

Everyone is welcome to come learn more and share ideas. Of course, we’ll also be needing volunteers to help make the event happen. So, even if you don’t attend the meeting, please let us know if you’d like to be involved. And watch WRIM newsletters for updates. (Subscribe on our website.)

Please tell us your perspectives about how to make a virtual event fun and meaningful. Share your ideas here in the comments, email us or join the meeting for some fun fellowship too. If you want the Zoom link, message us at info@walkrightin.org.

Thank you for helping us make the most of ministry during “Covid times” and beyond!

Family Update from the Jamieson “Cocoon”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Amen

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

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

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

You can also read more about Cooperative Cocooning here.


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