Your Best Life Now. Not.

I follow Tim Keller on Facebook. And recently, he posted a quote that caught my eye.

We get angry when we feel like God owes us a better life than we have.

Ooh. That one stings. Have you ever experienced this?

Maybe it was anger over a promotion you didn’t receive at work. Or maybe it happened when you put in a bid on your dream house you wanted to buy—but the deal fell through. Or perhaps it was a slow burn resentment towards the neighbor’s kid who was awarded a full scholarship to college while you were working night and day to meet the tuition bills to put your kids through school. It can pop up almost anywhere. This type of anger can be so insidious.

Those of us who are parents of children with disabilities are particularly, dangerously, prone to the experience of destructive anger. It doesn’t just get directed at God. In fact, much more frequently, it can be directed at others. And even done in God’s name. It can sound a lot like this:

“The body of Christ is supposed to care for each other. Well I have yet to see anyone at MY house. Everybody else is out there, living their best life while I’m still changing diapers, driving to endless doctor’s appointments, and trying to make some headway in an impossible education system. What a joke.”

“Everybody belongs. That’s what our church website says. Ha! Not my kid.”

“Well, yeah, my church does do some stuff for us. But honestly, it’s just not enough. It never is. ‘Love one another.’ I guess that’s just for the other people.”

Anger is sometimes referred to as a “secondary emotion.” In other words: when we feel anger, we need to look to see what emotions might actually be behind it: Disappointment. Despair. Frustration. Loneliness. Fear.

In addition to looking for the “emotions behind the emotion” we also need consider what kind of thinking is precipitating those primary feelings. For example:

  • Do we possess tightly held expectations that we need to exchange for open-handed desires?
  • Do we possess an entitlement mentality that we need to exchange for vulnerability?
  • Are we wallowing in resentment of the life we have when we need to embrace acceptance of the life God has given us?

None of this is easy. Parenting kids (and adults) with developmental disabilities requires navigating along a pathway fraught with spiritual landmines. Rather than blow up our families and the relationships with others around us, however, we can learn to discern the depths of our own sin-prone hearts and to develop a heart of wisdom via the power of the Holy Spirit.

Psalm 90:12 says, “Teach us to number our days, that we may gain a heart of wisdom.” It takes wisdom to remember that this life isn’t about “your best life now.”

For the believer, it’s always about transforming each of us into the image of Christ, bit by bit. This is true in abundance and in want, in happiness and in sorrow, and in ability or disability. For, when God’s transforming grace is at work in our lives, it changes how we see and experience our daily realities. And it changes what we expect from others, who are also in the midst of their own very incomplete transformations as well.

Martin Luther once said this:

This life therefore is not righteousness, but growth in righteousness.
Not health, but healing.
Not being, but becoming.
Not rest, but exercise.
We are not what we should be, but we are growing toward it.
The process is not yet finished, but it is going on.
This is not the end, but it is the road.
All does not gleam in glory, but all is being purified.

No believer lives their best life now. Not one. “This is not the end, but it is the road.”

The Scripture is clear that, for every Christian, the best is yet to come. That said, when we focus on pursuing our own transformation in godliness, we will be freed to care about meeting the needs of others more than having our own needs met. That’s a good place to start.

Remember: We get angry when we feel like God owes us a better life than we have.

So this week, listen to your thoughts and your words.

  • Honestly. Are you angry?
  • What emotions might be behind the anger?
  • Can you name them?
  • Is there any errant thinking that is driving your underlying feelings?
  • Can you redirect those thoughts to healthier ones?
  • Are you believing the cultural lie that you should be living “your best life now?”
  • Do you need to repent of that?
  • Can you seek wisdom from the Holy Spirit to sidestep these landmines and focus on the true aim of this life for the Christian—being conformed to the image of Christ?

“Teach us to number our days, that we may gain a heart of wisdom.”

That’s my prayer for you, and for me today.

Stephanie O. Hubach is a Research Fellow in Disability Ministries in affiliation with Covenant Theological Seminary. From 2007-2016 she served as the Founding Director of Mission to North America’s Special Needs Ministries (Presbyterian Church in America). She is also a founding member of the Lancaster Christian Council on Disability (LCCD). Steph is the author of Parenting & Disabilities: Abiding in God’s Presence (P&R Publishing, 2021), Same Lake, Different Boat: Coming Alongside People Touched by Disability (P&R Publishing, 2006, Revised & Expanded Edition 2020), and All Things Possible: Calling Your Church Leadership to Disability Ministry (Joni and Friends, 2007). She has been published in ByFaith magazine, Focus on the Family magazine, and Breakpoint online magazine and produced a Christian Education DVD series based on Same Lake, Different Boat. Steph and her husband have two deeply loved sons, the younger of whom has Down syndrome.

For further information on her work, go to

Four Ways to Become a More Satisfied Special Needs Dad

We’ve been celebrating dads this past weekend. And so we should. They have a uniquely tough, demanding, relentless, and nuanced role in parenting. And when they have a child with extra needs, they bear a role that can be intimidating, confusing, overwhelming, scary, and feel relatively thankless.

I hear stories all the time from parents with children impacted by disability and/or complex health issues. Common themes in the experiences of dads include worry about their adequacy in contributing to the wellbeing of their families and concern about having satisfying connections with their spouse and children.

My hope is to encourage fathers and offer perspective about opportunities in four areas where many struggle.

Get free of your guilt.

When dad is the primary breadwinner, he may spend many hours apart from the direct household responsibilities. This is one factor in why moms and dads process their reactions to disability differently too. For example, if mom is the only one going to doctor appointments and hearing news first-hand with opportunity to ask direct questions, she will have a different awareness level. This will impact her unique timeline for internalizing things like fear and disappointment and may help her to develop discernment and confidence more quickly about specific caregiving responsibilities.

Whatever your circumstances with disability have been, it seems dads wrestle with a different type of guilt than moms do. And from what I hear, many dads are intimidated by all the wonderful things their kids’ moms are doing for their child. Dads carry concerns about present and future provision for the family. If they work long hours, they feel guilty about leaving mom alone with the children. They feel shame about having a way to “escape,” even if it is at work. Some wish they could attend more doctor appointments or wrestle to understand more of the medical or educational jargon.

Dads often want to be more supportive but feel limited.

Healing from guilt starts with taking an honest look at your personal weaknesses and strengths in your situation. (Look as closely at your strengths as you do your weaknesses.) Talk to your spouse about your feelings. Ask your child’s mom to share her view on your strengths and opportunities. (I hope both are learning to frequently express appreciation and affirmation for the value of the other’s role before skipping straight to opportunities.) Identify a couple of untapped opportunities together and consider how you can cooperate in taking a new step toward something for the family that will be mutually satisfying for parents and kids.

This could be as simple as a daily dance party or 10-minute piggyback ride. Fifteen minutes of special “dad time” with your child every day will last forever in their memory and be a heart-swelling gift to their mom too.

Hebrews 4:16
So let us come boldly to the throne of our gracious God. There we will receive his mercy, and we will find grace to help us when we need it most.

Process chronic grief.

Do you experience flares of anger, anxiety, or panic? You are not alone. Particularly since the pandemic, more people than ever are reporting increased stress, fatigue, strained relationships, loneliness, and anxiety-related health issues. With the added responsibilities of being a special needs parent, it is very understandable that you would be struggling with complicated thoughts and emotions.

Have you considered whether your reactions may be related to the way disability or special needs are impacting your life, your family, your future? When you are the parent of a child with high needs or someone relies on you for long-term oversight, there can be a great sense of weight rumbling in your gut. There can be many reasons behind the intense or negative emotions we feel, and it can be difficult to navigate what feels complicated or consuming. It’s worth taking time to understand the true root of our thoughts and feelings. Ambiguous, even mysterious, feelings need a safe space to breathe, to be explored.

Contrary to how many dads feel, it shows courage and strength to seek help. The enemy of your soul would love to see you stay isolated and silent on this front. Yet pushing down nagging thoughts, taunting worries, and ongoing frustrations puts you at risk of future health issues and deteriorating relationships.

Most emotionally and physically healthy parents and marriages impacted by disability are getting counseling where they can unpack complicated layers of their experience. Each person in your family is processing the experience of disability in their unique way and in their own timing. Learning to understand and respect each other is very valuable to each one’s mental health and opens doors for richness in relationships.

Dealing with grief is not easy. Thankfully, you can be processing sorrow and disappointment while also experiencing the joys and delights of fathering. When you allow yourself that vulnerability with God, yourself, and your family, you will discover a rich quality of life that comes only from sharing it. It takes ongoing attention and energy to tend to hard thoughts and emotions. But it is worth it. And it becomes a tremendous gift to your family when you take care of yourself and share your grieving process together.

2 Corinthians 6:4-10 
In everything we do, we show that we are true ministers of God. We patiently endure troubles and hardships and calamities of every kind. We have been beaten, been put in prison, faced angry mobs, worked to exhaustion, endured sleepless nights, and gone without food. We prove ourselves by our purity, our understanding, our patience, our kindness, by the Holy Spirit within us, and by our sincere love. We faithfully preach the truth. God’s power is working in us. We use the weapons of righteousness in the right hand for attack and the left hand for defense. We serve God whether people honor us or despise us, whether they slander us or praise us. We are honest, but they call us impostors. We are ignored, even though we are well known. We live close to death, but we are still alive. We have been beaten, but we have not been killed. Our hearts ache, but we always have joy. We are poor, but we give spiritual riches to others. We own nothing, and yet we have everything.

You can be processing sorrow and disappointment while also experiencing the joys and delights of fathering.

Make connection with your child more important than compliance or developmental progress.

At the end of the day — and at the end of your life, or your child’s life — what will matter more to you, to your child, and to the rest of your family is not how obedient or well-behaved they were, or even how much developmental progress was made, but the quality of relational connections you enjoyed. Maybe you need to read that again?

Every parent delights in seeing their children thriving. We all hope our children will experience blessings of health and reaching their full potential in various ways. But the depth of bond we make with our children and spouses will weigh more than gifts, accomplishments, and any developmental progress that was made.

Slow down. Look your child in their eyes every day. Get to know your child and learn how to enjoy today, this summer, and this year with them. You will never get this season back.

Watch, ask, and learn: What is it like to be you?

Don’t wait to work on your relationship with your child and make memories with them. The simplest encounters you share in the day-to-day moments may become the most profound or influential ones to accumulate meaning for them. Work at it with intentionality and stay available for the cherished things, one day at a time.

Romans 8:38-39
And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.

Romans 12:16
Live in harmony with each other.

Prioritize the blessing of forgiveness.

Life and relationships are messy. We all make mistakes. We all have regrets. Special needs dads, like any parents, are learning and growing new perspectives about how to lead their complex families. God offers do-overs.

There is life-giving, legacy-building blessing in making amends where there has been conflict or sin in the past. It is never ever too late for reconciliation. No child or parent is too old to experience a relationship freed and refreshed by grace. That means taking a step toward offering forgiveness, even when it isn’t deserved. It also means receiving forgiveness from your child too, even when you don’t feel deserving of it.

There is so much power in a reflective, heart-felt apology. It’s a value parents do well to pass on to their children. There is power from the Holy Spirit to pour out renewal between loved ones. There is power in modeling for the next generation what it looks like to embrace a lifestyle of empathy, humility, and grace.

Offer forgiveness without expectations and allow time for healing to unfold. Just as healing from physical or developmental disabilities can be a process that takes time, so does relational healing unfold in layers. Even if it is just one layer at a time, your steps of faith toward God and others will be multiplied.

1 John 1:9
But if we confess our sins to him, he is faithful and just to forgive us our sins and to cleanse us from all wickedness.

Galatians 6:4
Pay careful attention to your own work, for then you will get the satisfaction of a job well done, and you won’t need to compare yourself to anyone else.

RELATED: The Big Do Over

RELATED: How to Become a Different Dad

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.

New Book Opens Doors for Fun and Advocacy

Over the course of twenty-plus years working in the field of Disability Ministry, I have heard countless stories from parents and caregivers who struggle to navigate a less than accessible world. Trips as a full family into public must be meticulously planned and executed around meals and potential bathroom breaks. The near impossibility of making things work perfectly often causes more stress than families are willing to go through. The result, families are forced to play tag team. One parent always stays home to care for their child with a disability while the other ventures out.

Can you relate?

One of the major obstacles for families is the lack of universal-sized changing tables in restrooms. This is not unique to churches. Public spaces everywhere have looked the other way when it comes to true accessibility. And when a child outgrows an infant-sized changing table the world is no longer accessible.

Parents and caregivers that are brave enough to venture out despite the lack of universal-sized changing tables can be forced to lay their loved ones on a filthy bathroom floor or change them in the back of a van for the whole world to see. Lack of accessibility in restrooms robs people of their dignity. This should not be!

All people deserve dignity.

So what can anyone do about it? It seems like a problem that is too big or too broken to fix.

On today's blog, we're excited to introduce you to a new collaboration between Ryan Wolfe (founder of Ability Ministry) and illustrator Adam Bryant. 

Their book "The Incredible Shrinking Toilets" is opening doors for fun and meaningful conversations around the awkward topic of bathroom accessibility.

An obvious obstacle to change is the fact that talking about what goes on in the bathroom is awkward at best.

That is why Adam Bryant and I wrote a book called, The Tale of the Shrinking Toilets.

Adam Bryant, an accomplished artist, is the book’s illustrator. He was diagnosed with Asperger Syndrome at age 11. Adam never saw his diagnosis as a detriment, but rather a blessing. He graduated high school with honors and went on to earn his bachelor’s degree from Savannah College of Art and Design, majoring in animation. Adam shares, “What keeps me going as an artist is wanting to make a positive impact on the world with my art and helping reach others! That’s what I feel like I am here to do, and why I was given these talents!”

What exactly is this toilet book all about?

Why read a book full of potty talk? It is not because the author wants to push the buttons of the polite police in your lives. There is a much deeper meaning behind all this toilet talk.

You will soon find out that the world changed forever on “Two Two Day” when all the toilets in public restrooms mysteriously shrunk to miniature size. The Tale of the Shrinking Toilets reveals the devastating consequences of an inaccessible world as it paints a powerful allegory and invites its readers an opportunity to be change agents.

The book is meant to break the ice in a fun way on the difficult topic of bathroom accessibility. It was meant to be used as a conversation starter.

If your church does, favorite restaurant, business, etc. does not have a universal-sized changing table, buy this book for the lead pastor or business owner. Let the book start the awkward conversation for you. Ask them to read it and then follow up with them after they have read the book.

Do not just point out the problem. Tell them why accessibility is important to you, your family, and families like yours! Then present them with practical doable solutions and next steps.

In addition to the book, we have created a website full of resources to help you be a change agent in your community. Visit our website here.

If you want to get involved and make a difference check out our Initiative page. On this page, there are ways to contact your local officials, sample letters you can use to lobby for change, blueprints for building a DIY universal-sized changing table, and links to purchase affordable options.

If your church or business needs a universal-sized changing table, grant money is also available for your project. Learn more about those grants here.

This story is dedicated to all people with disabilities and their loved ones who are forced to navigate the frustrating landscape of a world that is neither kind nor accessible. Living in a world that is not accessible is not fiction.

This is reality. Thankfully, there is a solution to this crisis. Installing universal-sized changing stations in public restrooms can make all the difference in the world. Be a part of the solution. Do not be afraid of a little potty talk.

If you would like to purchase a book grab one in the Ability Ministry store. Every penny of your purchase goes to the grant fund that we make available for churches.

Thank you for being a change agent. Remember, everyone deserves dignity and you can provide that for them by being an advocate.

Ryan Wolfe is the President and CEO of Ability Ministry, a non-profit organization that provides homes for adults with intellectual and developmental disabilities. Ability Ministry also works with religious organizations, helping them to establish and advance Disability Ministry programming and outreach. In addition to being an author and featured speaker, Ryan is a passionate advocate for individuals with disabilities. His personal mission is to fight not only for inclusion but also for meaningful opportunities of belonging.

When Caregiving Sparks Stress Instead of Joy, What Can You Do?

When caregiving sparks stress instead of joy, what can you do about it? That’s a question I began mulling over since I posted a survey on my website about stress and compassion fatigue in caregivers way back in 2019.

Within 2 days, the survey had been completed 500 times. Less than a month later, that number had risen to almost 1,500. This was a full year before COVID and the pandemic reared their ugly heads. Keep that in mind while you read through the statistic below.

  • 98% of the caregivers said their duties cause extra stress in their daily lives.
  • On a scale of 1 to 10, the average stress level of parents was 6.4.
  • 91% said caregiving has affected their mental health.
  • 87% said caregiving has affected their physical health.

Further analysis can be found the Different Dream website. 

To borrow a phrase from Marie Kondo’s book, The Life-Changing Magic of Tidying Up, the statistics show that caregiving is sparking as much stress as joy in parents raising kids with special needs. Which is why I’ve been pondering the question posed earlier: when caregiving sparks stress instead of joy, what can you do about it? 

Look for Signs of Post-Traumatic Growth

One thing we can do is remember that traumatic and stressful events can lead to positive outcomes. Researchers Richard Tedeschi and Lawrence Calhoun refer to this phenomenon as post traumatic growth. They identified seven areas of growth that spring in people who struggle with challenging life circumstances.

  • Greater appreciation of life
  • Greater appreciation and strengthening of close relationships
  • Increased compassion and altruism
  • The identification of new possibilities or a purpose in life
  • Greater awareness and utilization of personal strength
  • Enhanced spiritual development
  • Creative growth

As caregivers, we can look for these signs of post-traumatic growth in our lives. While you may not find evidence of all seven, you may be surprised by how much growth you have experienced.

Cultivate Greater Post-Traumatic Growth

A simple way to cultivate greater post-traumatic growth in yourself and those around you is to capture your caregiving stories so they don’t get lost. Here are a few ideas about how to do so:

  • Tell your stories to family members. Record them on audio and video.
  • Write them down for yourself only, in letters to a few people, or for broader publication.
  • Take pictures of the people in your stories and add captions for the benefit of future generations.

Now, take a moment to make a list of caregiving stories you want to capture and preserve for yourself and those you love.

Validate Your Emotions

Some, but not all, aspects of caregiving stress can be reframed as positives. Therefore, it’s important for us to identify and validate the negative emotions associated with caregiving stress. This exercise, which Kristin Faith Evans introduced in a Different Dream guest post, can guide you through the process.

  • Name a painful emotion related to the pandemic.
  • Say to yourself, “It makes sense I’m feeling this way considering _________________________.”
  • Give yourself time to feel and release hard emotions.

Move Toward Acceptance

Once you’ve validated your emotions related to caregiving stress, Kristin encourages parents to move on to acceptance by asking these questions:

  1. What have I lost because of caregiving?
  2. What have I gained because of the pandemic?
  3. What have I learned through this experience?
  4. How has my faith been strengthened?
  5. What permanent changes do I need to accept?

Seek Professional Help

The above strategies can alleviate stress, but parents who engage in day-to-day caregiving may need the services of a mental health care professional to help spark their joy again. This post offers simple steps to help caregivers find qualified therapists with a Christian worldview near where they live.

The caregiving life can be stressful. It can also spark growth, joy, and enhanced spiritual development. Wise caregivers will use the five strategies above to reduce stress, and at the same time increase joy and faith to benefit themselves and those they love. 

Jolene Philo grew up in a caregiving family and raised a son with medical special needs. As a teacher, she created an inclusive classroom for children with disabilities for 25 years. She’s authored several books for the special needs and disability community, including Every Child Welcome: A Ministry Handbook for Including Kids with Special Needs and Sharing Love Abundantly with Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities. She hosts the award-winning blog, www.DifferentDream.comSee Jane Run!, the first cozy mystery in her series that includes characters with disabilities was published in June of 2022. Jolene and her husband live in a multigenerational family in Polk City with her daughter, son-in-law and their two young children.

Extraordinary Service

It was 6:30 pm on a Saturday night and we weren’t dressed for it.

We’d been browsing garden stores for the afternoon and ordering Larry’s new grill for Father’s Day. After two weeks isolated at home with Covid-19, Larry, Carly and I were relishing the freedom of meandering and being around real live people (not people on screens). Our adventures had run long though and now we three were a hungry bunch.

There was little doubt our favorite restaurant would have a long wait at this time of the weekend. So, we hatched a plan. I started to call in a curbside pickup order for Larry and me, and we would warm leftovers at home for Carly. But as I dialed the restaurant and Larry pulled us out of Lowe’s parking lot, we both dreamed for a moment about dining in. It was too much to imagine the relaxation of someone else warming and serving our meals.

Such a ridiculous idea. Restaurants are never a relaxing place with our Carly. Also, her meals have become more complicated lately with special dietary and food prep needs. We didn’t have her dinner medications along either.

Still, as they say, you can’t blame a girl for trying. So, I asked. The wait was 30 minutes. That would really be pushing Carly’s limit. For that matter, I might be hangry myself soon.

Larry swung around the corner to find a parking spot after dropping me off to get us on the list. That’s when a series of mercies that started 24 hours earlier grew momentum. The hostess rechecked her board and found a table open immediately.

Larry and I have dined at this restaurant easily more than a hundred times. But we have never taken Carly to dine there with us. During the pandemic, we ordered curbside a lot though. It kept life feeling a little normal, we thought, while also helping our favorite place stay in business.

Unfortunately, Carly’s restaurant eating has been on pause for several months with the exception of a nice refried bean and guacamole treat at the Mexican place down the street. Recent progression of issues with chewing, choking, and digestion, have required that I purée most of what she’s eating. In any case, I had already started mentally scanning this familiar menu for new ideas of soft things she might manage without spending the rest of the evening suffering reflux and other gastric issues.

Our two favorite servers weren’t available but we were just glad for any table. Despite it being a busy prom night, there were a few tables both inside and outside. It was a gorgeous evening. Eating outside seemed the easier choice. Any spills or extra noise would go less noticed out there. But we hadn’t brought jackets or sweaters and it cools off quickly this time of the evening in May.

So I asked for inside seating and was escorted swiftly to a table with a white cloth. As we approached the table, I almost asked for a booth without a tablecloth. Every parent of a child with developmental challenges knows the necessity of proactively managing potentials for disaster. I imagined Carly giving that crisp cloth a good tug at some point shortly after the table was filled with drinks and plates of food. But something in me just said, “Lisa, just roll with it.”

Before Larry arrived with Carly and her backpack, there were three glasses of water set in front of me.

Carly sat down and frowned, immediately scanning the room in curiosity as if wondering where in the world we were. Never ever in our wildest dreams did we ever ever imagine ourselves here just hours before. And we still had no idea what a surprise was yet to unfold.

Carly’s eyes scanned the room. I’m sure she was quite curious about the unfamiliar atmosphere but what she wanted most was food — and FAST!
Proud dad is staying hopeful about an unchaotic meal.
Meanwhile Carly frowns with hope that the wait for food won’t be long.

The woman serving us was exceedingly kind. She began asking a couple questions about Carly and explained that her son (now 31 yrs old) was born with cerebral palsy. She patiently brainstormed menu options with me (because Carly has complex dietary and food prep needs that would normally keep us from such an outing). It was at that moment it also occurred to me that it was Carly’s 24th birthday yesterday. How ironic that we were all about to receive a very memorable treat and honor.

Then that dear woman, Marilee, brought Carly a special beverage (complimentary, of course).

Again, she returned to our table just a few moments later. And that’s when Marilee went way above and beyond. She offered to feed Carly so we could relax and eat our own meals!

Our first reaction was to graciously express appreciation but brush off such kindness. But lo and behold, she came back a couple of minutes later, pulled up a chair, indicated she had only one other table of guests at the moment, and proceeded to ask for instructions about how Carly needed to be fed.

I cannot find words to adequately express how this moved us.

Merilee at Biaggi’s Ristorante Italiano in Maple Grove, Minnesota.

JAMES 1:17
Whatever is good and perfect is a gift coming down to us from God our Father. 

God is ever faithful. These have been among the hardest several weeks we’ve lived in a long long time.

Yet, in the 24 hours culminating in that restaurant moment, God’s mercies shone so unexpectedly and beautifully. Alex, Carly’s older sister who lives nearby, had visited for her birthday and offered to put Carly to bed for us so we could go to sleep early Friday night. Then Carly’s friend, Claire, came early Saturday morning and worked for 6 hours so we could sleep late. Larry and I had the longest night of sleep we’ve had in many weeks.

And now, this dear woman at Biaggi’s Ristorante Italiano was actually feeding our daughter part of her dinner!

It was a dreamy Saturday.

Only the God of the universe could have orchestrated such grace.

1 In times of trouble, may the Lord answer your cry.
    May the name of the God of Jacob keep you safe from all harm.
May he send you help from his sanctuary
    and strengthen you from Jerusalem.
May he remember all your gifts
    and look favorably on your burnt offerings. 

May he grant your heart’s desires
    and make all your plans succeed.
May we shout for joy when we hear of your victory
    and raise a victory banner in the name of our God.
May the Lord answer all your prayers.

Now I know that the Lord rescues his anointed king.
    He will answer him from his holy heaven
    and rescue him by his great power.
Some nations boast of their chariots and horses,
    but we boast in the name of the Lord our God.
Those nations will fall down and collapse,
    but we will rise up and stand firm.

Give victory to our king, O Lord!
    Answer our cry for help.

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.

Life Is in the Details When Special Needs Parenting

There are just so many details to navigate.

Visions of summer vacations are starting to creep into my head. It may only be April, but I am anxious for some breaks and really looking forward to connection opportunities with family.

Planning and preparing for vacations are overwhelming though. Traveling with someone who has disabilities or complex health conditions is complicated. Honestly, that is putting it mildly. I’ve learned some tricks for easing the logistics and emotions over the years. Still, I wrestle every time with my lists and goals, various worries, hopes and dreams, frustration, disappointments, resentment and more.

Life for families impacted by disability and other special needs are often consumed by details. And the need to function with great intention.

Earlier in the winter, we had opportunity to visit my parents in sunny Arizona. Carly’s special dietary needs involved pre-ordering some specialty items through Amazon and having those delivered ahead of time. Other grocery items were ordered online for curbside pickup. I coordinated with grandma for a convenient retrieval shortly before our arrival. Even as my folks headed out the door the day after Christmas to drive south, I remembered to send a box of incontinence supplies with them so we wouldn’t require that extra load on the plane in February.

A couple of months later, we flew with an extra bag filled with more things Carly would need for a comfortable, healthy trip. This included an adapted swim jacket, a couple of toys, medications dosed out for two weeks (plenty of extra in case our return got delayed due to Covid/other) and more.

In the meantime, my mom already keeps a few special items on hand for our almost-annual trips to their winter retreat. The “Carly blanket” is one such example. We do not take for granted the thoughtful investment our extended family makes in caring for Carly’s detailed needs.

This time, the rental house we visited had a pool. This was a wonderful bonus since Covid distancing and Carly’s unusual gastrointestinal issues can be a hindrance to public swimming. The weather was also on the cool side so grandpa could turn up the water temperature for greater comfort. God knew these details even before any of us did. I love to see His gracious hand that way!

There was just one problem with the pool. It was hard to keep Carly away from the underwater steps where she constantly wanted to climb, sit and splash. It had a rough surface, and she had no discernment about what that was doing to her shins.

Within the first few minutes, her legs were bloody raw. And due to Carly’s poor circulation in her limbs, abrasions heal very slowly.

As of today, a full 8 weeks later, those wounds are still healing. Of course, as is par for the course, they have healed more quickly than expected because we’ve learned exactly what brand of lotion is most helpful and how frequently we need to apply it in order to heal them most quickly.

So many details. We are literally swimming in them.

God knows about details. He was hyper in tune with them too. Take a look at a couple of examples:

Exodus 25:8-16
8 “Have the people of Israel build me a holy sanctuary so I can live among them. You must build this Tabernacle and its furnishings exactly according to the pattern I will show you. 10 “Have the people make an Ark of acacia wood—a sacred chest 45 inches long, 27 inches wide, and 27 inches high. 11 Overlay it inside and outside with pure gold, and run a molding of gold all around it. 12 Cast four gold rings and attach them to its four feet, two rings on each side. 13 Make poles from acacia wood, and overlay them with gold. 14 Insert the poles into the rings at the sides of the Ark to carry it. 15 These carrying poles must stay inside the rings; never remove them. 16 When the Ark is finished, place inside it the stone tablets inscribed with the terms of the covenant, which I will give to you.

Psalm 139:13-14
13 You made all the delicate, inner parts of my body
    and knit me together in my mother’s womb.
14 Thank you for making me so wonderfully complex!
    Your workmanship is marvelous—how well I know it.

Psalm 139:1-6
O Lord, you have examined my heart
    and know everything about me.
You know when I sit down or stand up.
    You know my thoughts even when I’m far away.
You see me when I travel
    and when I rest at home.
    You know everything I do.
You know what I am going to say
    even before I say it, Lord.
You go before me and follow me.
    You place your hand of blessing on my head.
Such knowledge is too wonderful for me,
    too great for me to understand!

God’s attention to detail may have been confusing or felt demanding, at times. It gives me comfort to understand some of His motivations. For example, the reason for the tabernacle details included the nature of a most holy God but also “so I (God) can live among them” (Exodus 25:8).

Scripture itself is woven together in way that clarifies and proves Jesus as the incarnate God. Conservatively, Jesus fulfilled at least 300 prophecies in His earthly ministry.

I also love knowing that God cares about our specific needs, and He doesn’t fault us for being uniquely wired (Psalm 139).

Our lifestyle in the details with Carly may be absurd to people. Some judge our attentiveness to them as overkill, a lack of boundaries, or simply overwhelming. In complete exasperation, my own daughter once referred to us as a high-maintenance family as we prepared to leave for a vacation. I am well aware that we are not always of sound mind. Sleep deprivation weakens both wisdom and willpower. But believe me, some of our decisions make life immeasurably better for Carly and, just as important, easier for us.

We live near the end of our ropes more days than I can say. So, if something is going to make caregiving easier, you’ll probably find me right there!

It is a blessing that I am a detail-oriented person. I’m not just good at managing the minutia. I also get a certain amount of satisfaction out of keeping things well-coordinated. That’s a handy passion for a caregiver.

Every caregiver needs to find and optimize their own unique sweet spots. Details are one of mine.

RELATED: “Sweet Spots” series of articles.

Nonetheless, we must constantly be proactive while holding plans loosely. The nature of disability and health issues is that things will invariably go wrong or differently than expected. No manner of micro-managing ever plays out exactly as we hope. Still, we’ve gotten pretty darn good at — for better, or for worse.

I’m thankful that God’s mercy has been seen in the healing of pool wounds, forgotten medications, lost toys, even a lost iPad once. His power is made perfect in our weakness (2 Corinthians 12:9).

Despite our ability to ensure that all the details are perfectly managed, and the vacation goes off without hitch, we are making memories. It has always been worth the effort to make family time. Couples time too.

When love is ingrained in the details, there is always a win for everyone.

I am most thankful that God’s reason for details is always about His love. His detail orientation always assures us that He is trustworthy.

God help me — may all of my own attention to details be foremost about love.

Psalm 37:23-24
The Lord directs the steps of the godly.
He delights in every detail of their lives.
Though they stumble, they will never fall, 
for the Lord holds them by the hand.

As a caregiver, I can grow so weary of the countless and consuming nature of all the details! And when I focus my attention on the object of those particulars, fine points, and contingencies, I am vulnerable to making an idol of controlling life instead of living in love.

Lord, help me live in the details while abiding in Love.

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.

Finding Open Doors and Hearts

My beloved shoe repair shop is gone. Carly and I headed over there the other day because I was hoping to get a favorite leather purse fixed. I knew our local cobbler would be perfect for the job. He would have all the necessary tools, along with a willing and flexible spirit.

He filled some valuable needs for us in the early 2000s. Most notably, when Carly was very young, and her foot supination was needing attention. He rose to the occasion. We had been advised to find a shoemaker who could add a wedge on the outside edge of Carly’s soles. They would help neutralize her positioning, protect her from injury, and support healthy growth and development.

I enjoyed that shoe guy immensely. In stature, warmth and even facial features, he reminded me of Geppetto, the old woodcarver who created Pinocchio. His empty windows made me sad but grateful with nostalgia.

Our beloved shoe repair shop, closed and vacated. (March 2022)

Times are different now. Covid has changed so much. But the culture was already shifting. These days, people rarely need shoe repairs. After all, many of us lived in our socks and slippers for the better part of 2020 and 2021! Also, with the quality of how things are made now, and the nature of people being enticed by shiny new things, we tend to replace rather than repair or renew anymore. I predict the repurposing movement may never make its way to clothing with the same gusto it has for furniture and nick knacks.

Still, when we really need our shoe guy, nobody else will do. He might fulfill a small niche need, but it’s an important one and few others can step in to fill that “shoe.”

Now friends, I really like my purse. I want it fixed pretty badly. It is disappointing and frustrating that I have very few options left, at this point. I’ve been told that one option is to take it to a leather repair shop that is going to charge me $50 for the repair. That’s not going to happen. The other option is start calling other shops to see if they can give me a cost estimate before I start driving far across town to the very few and far-flung options that are left.

Seriously, I don’t have time or energy for this.

This is where my mind pivoted to something I often hear my clients say. They have been desperate to find counselors who truly understand their situation as caregivers. They desperately want specialized and credible encouragement and practical application for their very complicated lives and all from a foundation of Christian values. They need a counseling “shoe” that really fits.

One mom’s voice often rises to the top of stories I’ve heard over the years:

“I had received counseling, but it was really difficult because not many people understand the dynamic that we go through. And the first time I talked with Lisa, I remember thinking to myself, finally somebody gets it. Somebody hears me and somebody understands. She understands but she never left me to continue to wallow in my pity. She reminded me of God’s truth, of God’s promises, and all in the context of understanding as someone who had literally walked in my same shoes. I heard it better from someone who suffered sleepless nights. I heard it better from someone who had taken her child to have speech therapy, occupational therapy, swallow studies, you name it. Her encouragement came from a different place. And it meant the difference, for me, between life and death. I literally was suicidal the day I spoke with her. I had made a plan and she convinced me otherwise.”

WRIM Counseling Client

I share this so you have a sense of where my personal passion comes from, but more so because this represents a grossly under-recognized heart cry of parents and family members who are caregivers.

This kind of desperation needs a voice and a platform. These friends need help. A unique kind of help.

When the Board of Directors for Walk Right In Ministries met in early March for our annual meeting, there was a great deal of discussion around this subject. WRIM fits a unique niche offering services that an extreme few others offer anywhere in the world.

Walk Right In Ministries is on mission to build faith and community with families impacted by disability and special health needs.

RELATED: Watch “About Walk Right In Ministries”

Caregiving families, depending on the degree of health or developmental complexities involved, have many and varied needs. And there can be sources of help for many of those needs ranging from government benefits to charities and business that provide everything from adapted equipment, home modifications, horseback riding or music therapy, and braille books to specialized financial planning and legal counsel. But a caregiving parent who wants a Christian counselor who is experienced working with someone raising a child with disabilities or complex health needs will be hard-pressed to find it.  

We’ve been preparing for Reach Night 2022 here at Walk Right In Ministries. That’s our annual virtual fundraiser. And the focus this year will be on raising money, specifically for counseling scholarships. Last year, WRIM offered $18,000 in scholarships to families seeking Christian counseling and discipleship services.

You may or may not have known exactly what our niche is at WRIM. You also have been unaware of how great the need is for what we do and how hard it is to find people and organizations who do it. Come hear the stories. Learn more about what an amazing difference these kinds of services are making for families living with disability. There will be music from national, award-winning artists too!

RELATED: Watch Impact Stories from Reach Night 2021. There will be more exciting stories like these at Reach Night 2022!

Walk Right In Ministries welcomes and needs financial support. Gifts to WRIM make several things possible:

  • People with disabilities, their caregivers, and their families will be encouraged. They will feel seen, valued, and understood. They will have unique spiritual and emotional needs met, not just their physical and lifestyle needs.
  • WRIM will be able to increase our investment in a growing team of trained therapists, coaches, and mentors who specialize in caregiver support.
  • Caregiver-focused counseling, training and discipleship support groups will be readily accessible, regardless of someone’s ability to pay.
    Note: As a 501(c)3 non-profit organization, WRIM offers many counseling scholarships and a sliding fee scale. No one is ever turned away.
  • Other organizations will increasingly recognize faith-based caregiver support as a valid “niche” and have confidence to increase their own investments in counseling and discipleship resources.
WRIM offered $18,000 in counseling scholarships during 2021.

Yes, we’re asking you to pray for our “competition” too. We welcome competition because that means families living with disability will more easily find and access essential help they need!

Pray also that every single one of us increasingly follows Jesus’ model for biblical friendship. Because if every Christian was walking in God-honoring friendship with others, especially those who live with extra needs or challenges, the world wouldn’t be so reliant on highly trained counselors and pastors.

We have a wonderful night planned with Reach Night 2022! I truly hope you’ll join us on April 8th at 7 PM Central on Zoom. RSVP here for the link and meeting code.

For a delightful half hour, you’ll hear stories of lives being changed by God through faith-based caregiver counseling, training and discipleship support groups. You’ll also hear music from national artists — Dove Award winning Ginny Owens and the Grammy nominated sibling group The Martins.

RSVP now for a “front row seat” on Reach Night!

God is doing something powerful among us. He is building a diverse and rich community where people are finding true hope, help, and friendships.

God is connecting the stories among is in beautiful, life-transforming ways!

Thank you for any part you are playing in this beautiful ministry and community where lives are being transformed! Thank you for helping caregivers find open doors and hearts, with practical spiritual tools and the hope of Christ.

Oil and perfume make the heart glad, and the sweetness of a friend comes from his earnest counsel.
Proverbs 27:9

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.

Spring Challenges Remind Us of Good News

Was I the only one stunned to realize it is already Daily Savings Time?

Clocks springing forward, weather changes, and seasonal paperwork updates (IEPs, guardianship renewals, medical record reviews, annual budget writing for government benefits, etc.) are things that can strike weariness or frustration in the family impacted by disability. Since establishing well-functioning routines is both essential and hard for us, the time change can create additional stress and stretch.

Over the weekend, I was generating the medication schedule that will allow Carly to transition with the change of clocks (gradually over a couple of days). Larry and I braced for the likely disruption to her sleep schedule. That can last a couple of weeks. It is tempting to anticipate the worst.

As my shoulders drooped and I sighed another prayer, God impressed reminders of hope on me. Friends, we don’t face these things without His presence, power, and daily mercies.

So, today’s post aims to bring a prayer and encouragement. With every challenge, there is more than enough good news.

Clocks springing forward can wreak havoc in the lives of people whose well-being relies on stable routines.

Good news…
Jesus understands how hard it is to adapt to this world. He adopted the nature of mankind while remaining fully God. Jesus’ mission—Divinely born into the flesh to atone for our sins—required the most extreme adaptability scenario ever in history. We can be confident He will help us adjust to changes and challenges too.

Jesus Christ emptied himself, by taking the form of a servant, being born in the likeness of men. And being found in human form, he humbled himself by becoming obedient to the point of death, even death on a cross.
Philippians 2:7-8

Rusting wheelchairs parts need replacing after winter ice-melt chemicals.

Good news…
God cares about the details of life that matter to us. Jesus encouraged us to pray “give us this day our daily bread.” Yet throughout God’s Word, we are also reminded to keep our perspective fixed on future and eternal glory.

That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So, we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.
2 Corinthians 4:16-18

Individualized Education Plans and 504 Plans are often reviewed and updated this time of year. The associated meetings are time consuming, and can trigger grief, frustration or fear.

Good news…
God is not limited by the best or worst IEP or 504 Plan. A parent or guardian’s advocacy matters. Still, our wisdom, knowledge of the future and influence over others is limited. Even the most well-articulated plans are not always implemented well. We can faithfully, humbly and respectfully persevere in the process. But we must ultimately trust that God loves our children even more than we do. His ultimate purposes will prevail. We can surrender our loved ones to God’s presence, power and goodness.

Jesus looked at them intently and said, “Humanly speaking, it is impossible. But with God everything is possible.”
Matthew 19:26

Parents try to find their best-guess answer to an educator’s question, “where do you see your child in the next 5 – 10 years?”

Good news…
God doesn’t guess and His purposes prevail. Jesus holds our children—of every age and stage—in the palm of His hand.

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and hope.”
Jeremiah 29:11

Families impacted by disability and other special needs typically require extra resources as summer nears (e.g., adapted bikes/trikes, students and young “mother’s helpers” who are looking for part-time jobs, summer camps and other programs offering accommodations).

Good news…
We can anticipate that God will surprise us with loving provisions. God’s resources are unlimited. His love for you and your family is limitless—too great to fully understand. He empowers you with inner strength through His Spirit.

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. 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. 
Ephesians 3:19-20

Families with unique and complex needs find attending an Easter service (and family portraits in festive attire) chaotic or disappointing.

Good news…
Christ-loving families can rejoice. Victory at the cross accomplished more than just redemption from sin — it assures us that God’s power and sovereign goodness covers our complicated circumstances and adversity, ensuring great reward for us.

We are called to fill our minds with God’s words. We are also called to fellowship. When participation in church is not possible for a weekend or a season, praise God there are alternatives. Let us also be humble, patient, and gracious teachers among those who are naïve, apathetic or even negligent. Walk Right In Ministries is praying with you that churches who are falling short of their call will be re-inspired by God with ideas, energy and passion to make connection with families like yours.

Let my teaching fall like rain and my words descend like dew, like showers on new grass, like abundant rain on tender plants.
Deuteronomy 32:2

Consider reaching out to Walk Right In Ministries if you are feeling lost or isolated this Easter season. Let us help you find satisfying and God-glorifying connection.

On earth as in heaven — come, Lord Jesus!

And let us not grow weary of doing good, for in due season we will reap, if we do not give up.
Galatians 6:9

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.

Disability Take Us Deeper

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
— from Oceans (Where Feet May Fail) © Hillsong Music Publishing Australia

I used to stand enthusiastically in church and sing these lyrics without fully realizing what a tremendously radical surrender I was declaring. Then one weekend, while presenting at a women’s retreat, those words hit my mind and heart differently. They hit me rather like a two-by-four, actually. The song changed me and many others in the room.

These women came to the retreat in hopes of finding insight about their personal calling or life purpose. Many were feeling stuck in the mundane routines of parenting or concerns about limitations as they aged. Like any of us, they were finding life and relationships hard. They also felt life was frequently less exciting than they had imagined in their youth that it would be. Some suspected they were doing something wrong because life wasn’t more fulfilling or feeling sufficiently productive.

Jesus, the enemy steals my joy and feeds me lies. I confess to believing that adversity and boredom equate to a lack of purpose or a failure in faith.

Do we really mean it when we ask God to give us a life that matters? When we ask God to show us how strong He is, do we realize that He might use us as His canvas? When we wrestle with the parts of this parenting journey that feel impossible and wonder how long we will be able to hold on to our faith, are we willing to choose trust that we are part of God’s vast and creative Kingdom scheme of things?

Jesus, take me deeper than my feet could ever wander. Wherever you would call me.

Parenting a child with disabilities changes the trajectory of our lives. Followers of Jesus find themselves on a different path of adventure than they would have imagined or even hoped for. We may have aspired to see the power of God and experience growing intimacy with Him. But seldom do we have any idea about what might actually be involved in getting us there.

After the worship set was finished that evening at the retreat, I stepped back to the podium and shared a personal story about how God changed my perspective about the very unexpected and challenging life I was leading as a special needs parent.

My daughter Carly used to struggle with strabismus, an eye focusing and teaming issue. She needed therapies to stimulate her macular vision and prevent her from fixating in her peripheral field which interfered with her depth perception and affected her balance (among many other things). One of her therapies involved wearing “pinhole glasses” and watching high-interest entertainment on television from a specific distance.

Carly’s therapies aimed to bolster the eye-brain connection because doctors understood the problem to be more about her neurology than her anatomy. You might say, the way her eyes functioned were dependent on changing the messages that her mind was giving her body (ocular muscles).

As I watched her wearing those fancy glasses one day, I recognized a metaphor about faith and perspective. Carly’s glasses gave me new perspective about our struggles.

Those glasses limited some aspects of Carly’s vision in order to stretch and strengthen other aspects of her vision. Her brain was learning how to search out and learn new information, perceive differently, and function more effectively. Carly’s life was stretching me to see God’s Kingdom purposes differently. I was developing a Kingdom perspective about our circumstances. I was growing new vision that our situation was God-purposed, God-authored and imperfect, but holy.

Oh my, raising a child with disabilities is so very holy! Jesus, help me let go of needing to see the whole picture and grow a new perspective. I need Your vision and mindset to carry me through circumstances that feel impossible sometimes!

Those song lyrics suggest we are willing to give up absolutely everything—hopes, dreams, comfort, clarity— for the benefit of experiencing a rich and deeply purposed life with God.

WRIM’s Real Talk Connect discussions for family caregivers are based on ten Biblical principles like this one.
Contact us for the Zoom link, the complete list of Bible principles and all the FAQs about Real Talk Connect!

My family—much like your own, I hope—has experienced many new opportunities from our experience with disability. While our family experiences chronic medical issues, mental health difficulties and developmental disabilities, each of us has been drawn into relationships we would not have known otherwise. We may have fewer friends than we had before, but many of our existing relationships are richer than they were before. We have different values now. We have unique perspectives on life, love, and priorities than we had before. We appreciate or cherish many things differently than others around us. Our faith is stronger. Our intimacy with Jesus is a life-giving experience instead of a cozy or intellectual concept.

As 2022 approached, my husband and I were feeling the grip and stings of disability on our life. We had been wondering again about some areas of our lives that feel stuck or senseless. We have had moments of ferocious anger with God and/or Carly’s circumstances. We have felt at our wits end with some of her medical issues and behaviors.

Thankfully, God meets us at the end of our wits. He reminds us of this one key fact:

Life is richer for us because disability has turned our world upside down.

Jesus, with each new day give me a fresh vision of the faith adventure that comes with disability!

“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

Hebrews 12:1-3

Today’s post originally appeared on Key Ministry’s Not Alone Parenting blog and is reprinted with permission.

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. 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 use one Bible principle as the theme for each week’s discussion during Real Talk Connect. Please consider joining us any Tuesday at 2 pm Central! Drop in for richly encouraging connection in a casual setting. Contact us for the Zoom link, the complete list of Bible principles and all the FAQs about Real Talk Connect!

Tips for Churches to Engage with Special Needs Families

This article is reprinted with permission from a post originally published in May 2021 at Key Ministry’s Church for Every Child blog. The dates have changed but the circumstances themselves have not changed much — most of the related needs and challenges still apply.

It has been more than a year since my family has been to church, in person. My husband and I are still uncertain about how or when we will get our daughter back to church. We aren’t even sure when we ourselves will go back.

The factors influencing our decisions about returning to church services range from logistical issues to behavioral concerns involved with our daughter’s readjustment process. If I’m honest, we are also struggling with the transition emotionally. We’re experiencing disappointments and longings about how church was done with us before the pandemic and during the pandemic. Now we’re wondering about the prospects for what life and ministry will be like for us after the pandemic.

If you listen to disability ministry leaders, surveys and thought leaders these days, you will hear a resounding concern that families impacted by disability, mental health difficulties and other special needs will not be returning to “church as usual” any time soon. Many report they may not go back at all. It’s just so much easier to worship online from the couch, or not at all, than to muster up energy for navigating a difficult in-person experience.

There are also families who can’t get back soon enough. Just last week I heard one mom say that her son with autism is not attentive to screens at all. So, he would not participate with his family in online church during the pandemic. Before the interruption, her son was making slow but steady progress in tolerating hour-long church services. What will it take to help that young man get back on track so that his whole family can experience God in satisfying community?

I hope churches and pastors are asking what will happen to these families. God says special needs families matter to your community. Your church matters to them also. Have you assumed we will all just come back to church again and worship the way we did in February 2020?

RELATED: Jesus Goes to Church Online

Photo credit: Adrianna Geo on
Photo credit: Adrianna Geo on

I understand pastors and church leaders are overwhelmed. Families with special needs would do everything we could not to add to your burdens. If we could. But we’re aching for some blessings. And that aching started long before our vocabulary ever included “COVID-19.” And, in some ways, we aren’t asking for things as big or complicated as you think we are.

Here are three things your church can do to bless individuals and families impacted by disability in your congregation to navigate the transition process and feel restored to our church communities.

  1. Ask, “What do you need from us in order to feel safe and comfortable returning to church?”
    What are their hopes and dreams? What are the obstacles? Do their goals include attending worship services, being part of a small group, attending youth group or Sunday school? What else? In what ways or areas might they like to serve? Can church volunteers or the benevolent fund provide some help inside the home? Caregivers and care coordinators may appreciate help with brainstorming ideas. They will certainly be blessed to be asked the questions. Your engagement with them is tremendously validating, affirming and encouraging. Transitions may unfold in stages. You won’t always be able to offer all of the solutions, but you can offer a process and pray for God to produce progress.
  2. Cultivate person-centered transitions, not program-centered plans.
    Ministry begins and ends with relationships. Individuals and families impacted by disabilities are blessed by your friendship and by a sense of belonging in your community. Learn what it’s like to live in their home and circumstances. What does parenting and caregiving look like in their world? Create safe space for them to process chronic grief. Reassure them that their presence with the church matters. Invite their prayer requests, with regularity. 
  3. Identify supports through your church, and offer referral options for those you serve.
    Nobody expects your church to meet every need. When a need for counseling exceeds a pastor’s expertise or availability, do you have a pool of outside resources where you feel confident giving a referral? Never before in history has there been such a robust network of faith-based special needs and mental health ministry resources available as there are right now. You can be developing a directory of resources, local and national, where families with special needs may be referred for all kinds of supports outside of what you can offer directly from within your community. Educate yourself and your leaders about the outstanding faith-based resources available to your church as well as to the individuals and families in your congregation.

RELATED: Five Ways to Increase Accessibility as Churches Re-Open

The life of a special needs family can be messy. Jesus came to bring fullness amid trouble. Jesus showed the church how to be unintimidated by complicated lives. He tells us to go out and make disciples. He tells us to bring people in to the banquet table.

The transition out of pandemic season presents opportunities for churches to minister among special needs families through the going out and the bringing back in.

RELATED:  Everybody Belongs, Serving Together offers tools, resources, stories, and tips.

Key Ministry and Joni and Friends offer leading resources to help churches minister alongside special needs families too.

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.