Truth About Adoption

Thank you to Leah Lundgren Spring for sharing today’s contribution. May God use it to grow our understanding, compassion, respect, and vision! As the world churns with troubling questions, let us consider the range of options, collaborate to make more solutions possible, and celebrate those who come alongside others who are hurting.

“Speak up for those who cannot speak up for themselves; ensure justice for those being crushed.
Yes, speak up for the poor and helpless and see that they get justice.”


I will never hide the truth of adoption.

Lots of future adoptive parents are watching me. And other adoptive families. They don’t understand what it means when you say, “we deal with lots of hard things.”

What is “hard”?

We are fortunate that, so far, this has been the easiest of our adoptions. But this is our sixth, and we are well prepared thanks to some of our other adoptions that were extremely traumatic for everyone, including our other kids, and myself, and my husband, Dean.

Some of the Spring Family

I will tell you, we deal with a teenager attitude with the cognitive ability an 8 year old and the social skills of 4 or 5 year old.

We deal with trauma triggers like suitcases due to far too many moves for one child, and too many caregivers. Riding in our big van is associated with being picked up at the airport.

This started in Bulgaria and continues here: When we drive down the road to anywhere she is constantly on the lookout for black SUVs, which she refers to as “jeep.” She studies the people inside. There is a slight sense of fear in her body language when one is close to us. Yesterday after picking up her glasses, there was a black SUV parked next to us, on her side of the car. She stopped in her tracks and stared at it, then cautiously walked to her door until she could see there was nobody inside. Did someone she know drive a vehicle like this and she’s afraid they’ll take her back? Did a person who once hurt or abandoned her drive one? We may never know.

Spring family on the road in their van.

Hard is thinking that having a teenager who obsessively DEEP cleans the entire house, top to bottom, would be a blessing. Why does she know how to do this? Who taught her? Was she taught for good reasons such as channeling her high energy and obsessive compulsive disorder? Or was she forced to clean and she thinks she needs to earn her keep? And hard is finding all the things you’re missing because the cleaner put them in a “better” place.

Hard is a child who can be absolutely darling 85% of the time. Until other people come around. All kids test. Please don’t say “all kids do that.” I have lots of kids. I know what kids do. I also know when a kid with severely disordered attachment is trying to manipulate strangers or visitors and how uncomfortable it is to deal with it. And I feel the judgement of others who don’t understand how absolutely firm our “no” must be.

Hard is parenting a child who, for 14 years, has never been told “no.” Hard is knowing that walking into a store means dealing with employees who say things like, “Oh, it’s ok. She can take that.” After all, it’s just an advertisement flyer. Or business card. Or free sample. And you sound like a mean parent for saying “no” to the child — Every. Single. Time. No. Matter. What. Because one “yes” means starting all over.

Hard is having a daily “paper clean out” of all the paper items taken from stores when you weren’t looking.

Hard is wanting to buy your child all the things she has never had but she already feels entitled because she’s gotten new things and thinks every new thing that comes into the house must be for her and forget anyone else.

A Spring family meal.

Hard is telling people please don’t bring her gifts.

Hard is watching the other kids struggle to adjust.

Hard is limiting independence already learned due to necessity, because it puts her in a position of power over other kids in the house. “Helping” isn’t always a good thing.

Hard is not allowing your child to even say “hello” to strangers in passing because she misunderstand it is safe to leave with them. Why not? She left with me, a total stranger.

Hard is standing in a check-out line while keeping your body between her and anyone else because she will start adjusting the clothing on total strangers.

Hard is having total strangers in public places ask questions for which they feel entitled to answers. I’m all about sharing our story, but it’s not always the appropriate time.

Hard is teaching English to a child with cognitive delays.

Like I said, this has been our easiest adoption. But that doesn’t mean we’re not exhausted.

It also does not mean we have regrets. We have ZERO regrets! Every day I ask “how can this be so easy? What’s ahead that we don’t yet know? Or is it easy because we already did the crazy high stress adoption?”

Hard is all the things we cannot share.

Hard is knowing her “hard” is a million times worse than ours.

Adoption is hard.

And so worth it.

RELATED: Churches that Encourage Adoption Should be Trauma Informed and Disability Accommodating

Leah Lundgren Spring is mom to lots of kids. In addition to her 6 adult children, Leah and her husband, Dean, have adopted several other children. All have Down syndrome. She has also lived through breast cancer with chemo, had 16 major surgeries (most related to cancer, including bilateral mastectomy and numerous breast reconstruction surgeries), scratched her head along with doctors when deciding how to keep one child alive, moved house, wiped noses, brushed teeth, trimmed toenails, cleaned g-tubes, and did more laundry than she cares to remember. The Spring family recently welcomed the newest American citizen to their family — Adell from Bulgaria — making theirs a family of 14!

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.

Parents Make Hard Decisions for Their Kids

We live in a post Easter world. What mercy! I don’t want to imagine being Carly’s mom — being any kind of person, in any kind of role — in a world without Jesus, the cross, the empty tomb.

I know that you know what I’m talking about. You don’t have to be the parent of someone who is suffering to appreciate the magnitude of what Jesus has done and how desperately we rely on capturing the vision He had in order to endure. And even endure toward JOY.

Hebrews 12:1-3
Therefore, since we are surrounded by such a great cloud of witnesses (see Hebrews 11 for an historic list), 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.

I need that absolute assurance of God’s power and love. You see, things like pain, confusion, and fatigue recur frequently in our home. I am utterly reliant on God for help, healing, hope, wisdom, peace — for literally everything. This past week was another good example.

But the examples go way back. Thankfully, the roots of my faith are growing deeper with practice. As I’ve heard so many older parents of children with special needs say, I’ve learned what it takes to be more resilient than I used to be. I just wish I could grow like this without so many “practice” drills.

There was a time many years ago when we were implementing a new physical therapy with Carly. She didn’t like it. No doubt, she was confused by why she was being moved in uncomfortable positions. We had more than a few conversations about whether the payoff would outweigh potential psychological damage we might inadvertently do by pushing through her resistance. We certainly didn’t want to traumatize her.

In the end, it seemed we needed to trust God to help us in two ways. We asked God to cause the therapy to accomplish everything it was intended to do and also protect her from any and all potential negative side effects. We aimed to trust Him for that, and we were really intentional about trying to build Carly’s trust in our love for her, even though it might have seemed to her, at times, like we were being cruel.

A loving parent does that all the time. We do hard things for the good of our children. We know it could be years, or never, before they understand why we did what we did.

This last week, Carly underwent extensive medical testing for chronic and escalating gastric motility problems. For any average person, the tests would not have been difficult. But for Carly, they were nearly impossible. Getting her through the tests, in some ways, carried high risks (e.g., seizures, bowel blockage, emotional trauma). Given the risks, you might wonder why we pursued the testing at all.

Parenting involves making hard choices on behalf of our child. Sometimes our decisions even cause the child pain. At some point, a parent determines the potential benefits outweigh the potential negative consequences.

Seeing one’s child in pain is heartbreaking for a parent. It doesn’t matter whether their pain is physical or emotional. Few things are as painful for a parent as seeing their child hurting or threatened and not be able to fix it for them. It’s a unique kind of pain when you fear you actually contributed to it.

What kind of pain does God feel when He sees His own children suffering, knowing He can stop it. He is well aware of His intention to allow it. Yet He never allows our pain without great purpose.

In the middle of another sleepless night this week, I was second-guessing a couple of our decisions. One test required us to pause her daily bowel regimen for a week. Surely, she would develop a blockage. We could only pray that it would clear quickly once the testing was done. Another of the tests Carly was having required that we pause all of her critical seizure, sleep and anxiety medications for a full 48 hours. The risks involved in doing that were obviously high. Even as I typed this, Carly had only slept during four of the last eighty hours. (She’s back on all of her meds now but it’s taking considerable time for her system to reset.)

So, while I was praying through another wits end moment at 3 am on Good Friday morning, I realized that part of my stress and sorrow was coming from the sense of pressure and responsibility I was feeling for what was happening. I had put a lot of energy — or shall we say thought, effort, and emotion — into getting the best possible information and outcomes with the least amount of pain for Carly. And for us. It’s a natural response.

I needed a supernatural response.

In that dark bedroom, I searched my memories for any scripture that might comfort and reassure me.

2 Corinthians 10:3-4
For though we live in the world, we do not wage war as the world does. The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds.

How many of us are well acquainted with fighting with spiritual weaponry. Yet we fail to credit God with power to absolutely demolish strongholds with His wholeness! We need breakthroughs in areas of health, unbelief, false mindsets, health, development, and so much more.

Somewhere between my knowing I’m reliant on God for everything in this messy life and trusting Him implicitly, I still gravitate toward feeling responsible for fixing things — for making the breakthrough happen.

You might say that comes with being a mom. Or you might say that is a lack of trust in God. In my heart, I know that I tend to usurp His authority. And that is sin. Yet He loves me without condemnation (Romans 8:1) and patiently trains me up in the way I should go (Proverbs 22:6).

Sometimes the rough stuff comes because of someone’s weakness or sin. Other times, life is troubling and it’s just nobody’s fault at all. Either way, God uses those things to grow us up in everything from character to perseverance and faith (Romans 5:1-8). If we let Him.

I get a little off sometimes. I put my focus on the discipline rather than on my Father. The resurrected Jesus. He is where the strength is. He is where the peace comes from. Friends, He is why, no matter what, there is joy set before us!

Our circumstances are often a training ground of sorts. Our Almighty Trainer and Coach leads us with authority, wisdom, and exceeding concern for our ultimate wellbeing.

I am thankful God never puts the pressure on me to carry the authority. I am thankful that, no matter what, there is joy. Even at the cross, there was joy!

Some lessons need to be learned, and learned again.

Thank you, Jesus, that You died, and You rose. You did it once. And that was enough. (Romans 6:9-10)

I’ll keep coming back to that.

Hebrews 12:7-13
Endure hardship as discipline; God is treating you as his children. For what children are not disciplined by their father? If you are not disciplined—and everyone undergoes discipline—then you are not legitimate, not true sons and daughters at all. Moreover, we have all had human fathers who disciplined us, and we respected them for it. How much more should we submit to the Father of spirits and live! 10 They disciplined us for a little while as they thought best; but God disciplines us for our good, in order that we may share in his holiness. 

11 No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.

12 Therefore, strengthen your feeble arms and weak knees. 13 “Make level paths for your feet,” so that the lame may not be disabled, but rather healed.

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.

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.


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.

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!

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.

Your Purpose Includes the Church

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

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

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

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

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

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

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

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

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

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

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

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

Part of your purpose is to strengthen the church.

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

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

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

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

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

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

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

God is transforming individuals
and shaping generations.

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

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

The Power of Love: A Caregiver’s Anchor Point

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

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

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

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

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

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

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

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

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

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

— David Lomas, The Truest Thing About You

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

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

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

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

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

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

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

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

Jesus didn’t promise a life without trouble.

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

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

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

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

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

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

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

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

Receive that love.

Rest in it.

Then follow Jesus into the world with it.

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

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

Who or What Holds the Power in Your Caregiving Family?

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

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

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

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

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

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

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

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

RELATED: Tips for the Task-Oriented Caregiver

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

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

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

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

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

Lisa Jamieson

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

It’s not about the closet.

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

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

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

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

LISTEN: Run to the Father

What are you building your life and family around?

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

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

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

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