God delights in any faith we can offer Him with our aspiration to grow. But adversity can test our faith. Oh, how being a caregiver for a child with disabilities has tested my own faith!
The testing of your faith produces perseverance. JAMES 1:3
Growing in faith is triggered by various things: prayer, reading scripture, seeing God’s power displayed around us (in nature, in people’s lives, in our ability to do things beyond our own capabilities, etc.). For many of us, growing in faith comes by doing life alongside others who want to grow too.
As iron sharpens iron, so a friend sharpens a friend. PROVERBS 27:17
There have been several defining moments for me in discovering that my growing personal connection with God has power to influence the faith of others and the depth of my relationships with them. I want to share a personal example here in hopes that it will help you catch a vision for the power and potential there is in sharing your own faith story, when opportune moments present.
It was about this time of year in 2009, and I was sitting in a cafe waiting to meet a woman I did not know. She had contacted me after reading my family’s story in the newspaper. I was a little nervous. I was also feeling humbled realizing that someone might have been moved enough by something of our story to actually ask for a personal meeting. I felt very self-conscious. I now had a somewhat recognizable face. She would find me. Meanwhile I peeked around the room knowing only that I was meeting a mom who had two children in serious pain.
I prayed. I wasn’t sure what this woman wanted from me and I was quite certain I had very limited resources to help. Silently, I asked God to put His words and wisdom and protection over me.
Two and a half hours later, we hugged and cried and thanked each other for things like transparency, courage and shared faith. Even though we both started that meeting feeling unsure about what might happen, God made much of the little each of us brought to the table. This was a mom whose heart was broken over a disease her two teenagers carried, over the burden of chronic pain they endured (that she had tried to fix for over two very long years) and over the toll it was taking on her family.
I listened. I teared up a couple of times. I struggled not knowing what to say and felt overwhelmingly inadequate. Once, I prayed out loud for a moment (when I sensed a desperation in both of us for more of God). A few times I tried to answer questions based simply on my own discoveries from God’s Word. Once or twice, I interjected words of affirmation as I sat there recognizing myself in her story. I was inspired by her endurance but ached seeing how lost and bitter she felt.
So maybe you understand why I was shocked when we stood after all of this and she hugged me, then looked me square in the eye before making a profound statement:
“I have heard the things you said to me about God a thousand times before. I’ve heard them from my pastors. I’ve heard them from friends. But I never received them like I did today. I guess I needed to hear them from a mom who knows my kind of pain. You know what it’s like to watch your child in pain and be able to do nothing to fix it. I guess you have a credibility with me that I needed today. For the first time in a very long time, I’m not angry with God. I feel hope. I can do this and God is near. I cannot thank you enough.”
YOU will be the one to encourage and inspire some people toward greater intimacy with God with an influence no one else will have.
Well, let me tell you. That moment was a marvelous gift to me. That moment assured me once again that God shakes the earth when we let our lives and our faith intersect with others. He doesn’t need my story or yours published in a book, a newspaper or a blog to make an impact. God provides platforms every day in clinic waiting rooms, on golf courses, in grocery aisles, in coffee shops, at water coolers, in classrooms, around dinner tables, in bedrooms, in dance and soccer carpools, on hiking trails, in campus hallways—you name the venue. There is great power in resonance.
Our own unique platforms and moments of opportunity will reveal themselves unexpectedly. We need to be ready to toss seeds of encouragement, hope and life into soil that is soft and ready to be tilled.
We must keep asking God to publish Himself in our lives as well as on our hearts and lips with things like compassion, enthusiasm, humility, expectancy, generosity, transparency, authenticity, vulnerability and a focus on Christ.
“May my lips overflow with praise, for you teach men your decrees.” Psalm 119:171
Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community alongside families living with disability.
A strong and healthy support system is crucial for caregivers. Robust supports will reduce stress and positively impact physical health as well as mental, emotional, and spiritual wellness. In a great many cases, a strong support system even impacts a family’s financial health by ensuring a caregiver’s employability outside the home.
You may feel confident that you and your family can remain healthy and on track. But that is very difficult without support. Be careful about letting the good days lure you into complacency about cultivating healthy systems and robust resources. You will benefit greatly by being proactive in this area. Use the energy you have in those stronger days to be intentional and forward-thinking about how to foster the kinds of supports you’ll need for the harder days.
Caregivers can develop habits that optimize their social supports which include emotional, practical, informational, and attitudinal resources. Those you find listed here are meant to empower you, not intimidate you. After all, we’re all in a work in process.
Healthy momentum should be the goal, not perfection. Think of these habits as a guide rather than a destination. They aim at helping caregivers maintain satisfying progress and keep from getting stuck on the often arduous and lonely road of caring for a loved one with disabilities, medically complex conditions, mental health concerns or other special needs.
Approach caregiver fatigue with a proactive mindset. When a loved one has disabilities or complex medical needs, caregivers tend to become very aware of their limitations, weaknesses, and weariness. Effective caregivers recognize they are vulnerable to battle fatigue and they work to stay ahead of it. They are intentional and strategic about cultivating a network of prayerful and supportive warriors.
Maintain a clear sense of purpose. Identifying your purpose in being a caregiver will help you stay focused on your goals, be reminded of your value to others, enable you to remain compassionate, give you a reason to persevere, reassure you that there are brighter days ahead, and relieve you of guilt and fear about cultivating support.
Know your unique strengths and learn how to stay in the groove of those strengths. Did you know there are things about you that make you uniquely equipped to care for others very well? A simple reflection on Psalm 139 quickly reveals that you are God’s work of art. Caregiving is a drain on your energy and will threaten your reserves. Just as your body needs fuel to stay alive and energized, your soul needs nourishment too. By recognizing and accepting you have certain strengths as well as areas of limitation and vulnerability, you can help you optimize those strengths and learn healthy, godly ways to stay out of the weeds of your weaknesses. It can also provide clues about opportunity areas for bolstering your support system with complementary strengths. RELATED: Check out our blog series about finding your caregiver “sweet spots.”
Ask for help. You can’t assume people know that you need help or understand how they can contribute. Most caregivers with robust support have learned to be bold and courageous about seeking help. They have learned to delegate through clear and direct invitations.
I learned a valuable lesson from one of my own adult daughters. She is involved with the national Sibling Leadership Network and explains that siblings want invitations to participate without any sense of obligation. When you make needs humbly and enthusiastically known without attaching them to expectations, those who offer to help can do so with genuine desire. Their commitment could be more long-lasting and more deeply satisfying for everyone.
Ultimately, you’ll need to admit that you are powerless and need God’s help with circumstances, relationships, responsibilities, emotional health, and finding encouragement. In a future post, I’ll share more about how you can recruit help among friends, family, neighbors, church members, and professionals.
Cultivate a cooperative environment. As a team is required, God also equips everyone on the team with unique ways and capacities for interacting with the others. Aim to optimize the strengths and capacities of each person within an atmosphere that features cooperation, compromise, and compassion. This will enhance motivation, build self-esteem, and bring personal and shared satisfaction.
Find your personal pace for an adequate rhythm of respite. Caregivers typically have very little discretionary time and few are able to get all the breaks they need. But some degree of adequate rest is essential for everyone. Your proactive mindset helps you learn to grab every opportunity for down time. But spontaneous moments of rest may rarely come. So, having planned breaks on the calendar can be powerful in helping you pace yourself mentally, emotionally, spiritually, and physically. Knowing something is out there on the horizon may be just the thing to get your through a particularly hard moment, day, or week. I’ll explore specific examples and ideas for your inspiration in a future post.
Share everything with Jesus. Pray without ceasing and don’t be afraid to show your raw emotions with God. Open your heart and mind to the Lord. Explore your hopes, dreams, sorrows, disappointment, needs, challenges, failures, gratitude, joys, and pleasures. Everything. Sometimes there won’t even be words for the groaning of your soul. The Israelites understood this (Exodus 2:23). King David understood this (Psalm 13). God understands too. Be assured, words are not necessary. God hears our groans and sees us (Exodus 2:24-25). His help and hope are deeply personal (Romans 8:22-27).
Adopt low expectations of the world — and out-of-this-world expectations of God. Managing expectations is a constant tension for caregivers. Even when your expectations are in balance, you will simultaneously feel confidently equipped for your responsibilities while utterly reliant on God (2 Corinthians 1:8-11). Only God is completely trustworthy and perfectly capable of meeting your needs. The people and things of this world can be a great blessing from the Lord but those provisions will always fall short of being enough. On some level, people will always disappoint you because you were made to need God most of all. Your ultimate hope and rest are in Jesus (Galatians 6:7-8).
The more you learn to walk in these habits, the stronger you will be against symptoms of battle fatigue. We’ll be exploring more about these habits in upcoming posts. I hope you’ll come back often, reflect, share your own “best practices”, and grow with us.
If you’re needing extra confidence, encouragement, or tools to assist you in finding your groove, please reach out for professional help. Consider caregiver consulting or professional counseling for personalized care.
Walk Right In Ministries is available to help you with education, consulting services, counseling, and referrals to meaningful resources. Our team collaborates with a broad network of local and national organizations dedicated to strengthening churches, communities, and families when disabilities are involved. Fill out the Interest Form or visit us at WalkRightIn.org to learn more.
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.
Back in May, I thought the summer of 2020 could benefit from an injection of fun — and prayer. It was pandemic season, after all, and people all over the world were still hunkered down amidst activity limitations and social restrictions. I found myself whispering exasperated questions to God at all hours of the day. And I wondered if others were doing this too. I wanted to know more about how others pray — people of all ages, abilities, nations and circumstances — especially when we are unable to gather in man of our usual ways.
So, I checked in with team members at Walk Right In Ministries about the idea of a summer contest about prayer. It was thought that my book Jesus, Let’s Talk could give some inspiration. Everyone agreed a contest could spur some sharing and be a fun way to create a sense of community. It would be something absolutely anyone could do and it would be as simple as a short post on social media.
We invited people to write to us, draw a picture or record a short video explaining how you like to experience prayer. Some were sent directly to my email and others posted directly on social media using the hashtag #JesusLetsTalkContest.
Responses came from people of all generations and diverse experiences.
One mom wrote, “We’ve tried to teach our kids to start every prayer with the many things they’re grateful for. Hopefully, it puts the rest of the prayer into perspective.”
An older gentleman isolated in an assisted living facility did a crossword puzzle this summer revealing a family around a campfire. It reminded him of a story to share about his own experience with prayer. He wrote, “When I was young, I learned about Jesus. When I got bigger and went to church in Sioux Falls years ago, I went to a group that would meet after church and have campfires. When I sit around the campfire, I think about what Jesus went through. When I am lonesome, I think about God or Christ. It’s a different world since the Covid. Praying at the campfire reminds me that (Jesus understands what I’m going through too).”
I was inspired and I hope these highlights encourage you too.
We have selected three stories from June, July and August and each of those featured friends is receiving a gift card from Walk Right In Ministries. It has been a fun and simple way for us to thank people for encouraging others with their own experiences.
We want to thank everyone who took time to share a story. It was very encouraging to me reading about how you talk to Jesus. I had fun reading comments on social media too. When one of our winners posted her video, friends encouraged her saying things like, “You are such a good friend! (I’m) praying for you too.”
I know the Bible tells us that prayer is sometimes supposed to be private. But it is also shows that prayers is to be shared sometimes too.
All these with one accord were devoting themselves to prayer, together with the women and Mary the mother of Jesus, and his brothers. Acts 1:14
“Again I say to you, if two of you agree on earth about anything they ask, it will be done for them by my Father in heaven. For where two or three are gathered in my name, there am I among them.” Matthew 18:19-20
And let us consider how we may spur one another on toward love and good deeds, not giving up meeting together, as some are in the habit of doing, but encouraging one another–and all the more as you see the Day approaching. Hebrews 10:24-25
With so few opportunities for worship together in our churches these days, this summer’s prayer sharing felt to us like fellowship and a community of worship among friends here at Walk Right In Ministries. We are so thankful for that.
“I am glad I can pray whenever I want. I am home all day alone but NEVER really alone. I have someone to talk to all day. I pray my gratefulness when I look outside and see birds and clouds. I pray a lot about our world when I am holding my cross at night. Every morning I kiss my cross and thank Jesus for another day. It is a gift to me. When I listen to my Christian music, I pray out loud.
When my tears flow, I look up at the clouds and know I must persevere as I know pain and suffering will end in heaven. Sometimes all I can do is say, ‘I love you’ and ‘thank you for memories of beautiful moments.’ Saying ‘I love you, God’ is a simple prayer but, oh, how he loves to hear this!
It is easier to pray when things are good and I know how difficult it can be to pray when you are suffering. We need to love others and be grateful.”
Judy Markson posted a photo with her granddaughters.
“Jesus, Let’s Talk was in a stack of books I read when June and Esme were over last Tuesday. They knew a couple of the signs already and we had a sweet conversation about the kids in the pictures.”
Congratulations to our winners and thanks to all who participated!
Did you know there’s a fun contest happening this summer for readers of Lisa’s book Jesus, Let’s Talk? This is for people of all ages and stages of life — the young and young-at-heart! You could even do it together. (Our June winners were a grandma and two of her granddaughters.)
To enter, all you need to do is tell us about a place you like to pray or person you like to bewithwhen you talk to God. Here are some ideas about ways you could share…
Draw it in a picture
Write a short story (even a couple of sentences is enough!)
Record a short video of yourself telling us about (or showing us) a place you like to be when you talk to God
It’s okay to have a parent, caregiver or friend help out.
Here’s all you need to do to enter:
Post your story or artwork on your own Facebook page or Instagram and use this hashtag:
#JesusLetsTalkContest
At the end of August, we’ll be selecting another person/family/group to receive a fun treat in the mail.
Winners get a choice of gift card (e.g., Target, Dairy Queen or Jimmy Johns).
We know your experience will inspire others so we’re excited to help you share stories and artwork!
We’re in the very early stages of planning a virtual event (probably a fundraiser with a concert) to happen during late January or February 2021. Our first meeting to begin dreaming and planning is scheduled for next Monday night on Zoom —
Monday, August 17th at 7:30 pm.
Would you consider coming to this meeting to help us dream and plan?
Everyone is welcome to come learn more and share ideas. Of course, we’ll also be needing volunteers to help make the event happen. So, even if you don’t attend the meeting, please let us know if you’d like to be involved. And watch WRIM newsletters for updates. (Subscribe on our website.)
Please tell us your perspectives about how to make a virtual event fun and meaningful. Share your ideas here in the comments, email us or join the meeting for some fun fellowship too. If you want the Zoom link, message us at info@walkrightin.org.
Thank you for helping us make the most of ministry during “Covid times” and beyond!
This pandemic season is creating a unique opportunity for intimate bonding with those we are closest to in life. Sure, it doesn’t always look or feel like creating sweet memories together. Bonding doesn’t always come easily in our home, that’s for sure! But our family is benefiting from learning to prioritize encouragement and cooperation. And I think — I pray — that a lot of us will look back and see that something very special happened in the grand scheme of this season.
Last week, we took some time out of quarantine tedium to play with friends on Facebook. Carly and Claire joined me for a Real Talk livestream we called “Pandemic Edition #1.” We sure had fun making some trail mix, playing a couple of online games with viewers and exploring what it looks like to “cocoon” well. The following notes share highlights from that conversation.
Thriving families have compassion for each other’s unique needs and they learn to cultivate a cooperative environment in their home.
Stress, anxiety, fear, fatigue, burnout and breakdown are minimized when we pay attention to each other’s unique needs for casual relationships, emotional connectedness, task orientation, control and decision-making. (For us, this includes paying attention to the family’s needs but also care support staff with Carly as well.)
Not everyone expresses their needs as openly or clearly as others. That doesn’t mean the needs don’t exist. The ways and degrees in which we express our needs to others can be influenced by our own natural inclinations but also by how we were raised, how safe we feel to speak up or whether we’re trying to protect others from others from more demands. Some of us simply aren’t that self-aware. And children are often not mature enough to know how to articulate what they are feeling or needing. In a cooperative environment, we are attentive to one another and help each other recognize and meet needs in healthy, God-honoring ways.
It’s not all about bonding and attachment to each other though. For many living in close confinement, there will be a need to learn/teach healthy detachment too. It’s okay for someone to take a break and go shut a door for a little while.
There are tremendous benefits in being intentional about caring for the soul needs of each person in your pandemic season cocoon. Why am I using the term “cocoon?” Cocooning is a term often used by adopting families for a period of seclusion they hold after an adoption. It allows for bonding while also protecting the immune system of an international child who isn’t yet vaccinated and wasn’t necessarily born to a mom with immunities to the various things someone might be exposed to in our country.
Cocooning is a term often used by adopting families for a period of seclusion they hold after an adoption. It allows for bonding while also protecting the immune system.
We all have our own unique soul needs. I used to read Psalm 139 with the focus of my attention on the way God had woven my body in a physical way. But God’s words took on deeper meaning when I considered that my “delicate” or “inward” parts included the way I think, how deeply I feel things, the way I express myself, the degrees to which I find fulfillment in tasks — all the complexities of my soul.
13 For you formed my inward parts; you knitted me together in my mother’s womb. 14 I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. 15 My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. 16 Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.
17 How precious to me are your thoughts, O God! How vast is the sum of them! 23 Search me, O God, and know my heart! Try me and know my thoughts! 24 And see if there be any grievous way in me, and lead me in the way everlasting!
When God calls us His masterpieces (Ephesians 2:10), He means every detail about who we are is His handiwork. That includes our physical anatomy as well as our soul. Our soul craves communion with Him yet we chase things of the world to fill our needs. In quarantine season, in caregiving season, in any season when the needs of our soul are strained, we need Jesus most of all. But Jesus has compassion for us and gives us gifts out of the world to reveal His intimate understanding and value of us too.
These are some general areas where we each have our own unique degrees of need:
SOCIALIZATION or how we are satisfied in relationships includes two very different layers of social-emotional need.
Inclusion — a sense of casual association and connectedness
Affection — a sense of emotional connection within deeper relationships that is expressed through words (e.g., appreciation, affirmation) physical touch (e.g., hugs, snuggling, holding hands), gifts, acts of service and more
TASK ORIENTATION is not everybody’s genius. Staying focused or disciplined with accountability or inspiration can be tremendously challenging for some. For others (and I’m talking about me here), the “almighty task rules!” One inclination is not better than the other, just different.
A few people are appreciating that there are fewer distractions so they can tackle their lists and even catch up on some things around the house. (Take advantage of your natural household project managers and use this time to develop administrative skills in younger children.)
It will help some people to alternate between tasks and social activities, avoiding a focus on one or the other for long periods of time.
Some will find it helpful to complete tasks when they are connected with some social component.
CONTROL & DECISION-MAKING responsibilities may be shifting considerably during this quarantine season.
Logistics (groceries, healthcare, germ management, household clutter) must be managed differently for now.
Circumstances out of control may incline some people to overcompensate with substitutes. For example, a tidy house can create an illusion of control when everything else feels like chaos. A purged closet may refresh and energize the person whose heart is heavy with worry.
Pacing time in new ways will be energizing for some and exhausting for others. A slower pace can be very satisfying or will trigger anxiety in those who enjoy being busy.
Changing your environment can be a way to lift spirits. For example, rearrange the family room furniture, let the kids change around their bedrooms, use special plates for dinner, have a crazy hair day or purge some toys and clothing into “junk” and “share” boxes.
Giving each other plenty of choices. (For our daughter with special needs, this means pulling out neglected laminated photos, objects and iPad apps like GoTalk Now.) This can feel freeing and empowering when so many of our circumstances feel out of control. But some people feel overwhelmed by needing to make decisions. Perhaps you are someone who likes to share decision-making responsibilities. Doing so alone triggers anxiety or frustration. Collaborate on decisions as spouses or family whenever you can.
Just like having physical needs (body), God created us with mental and intellectual capacities (mind), and also emotional and spiritual needs (spirit). None of these needs is bad or wrong. But if our needs don’t get met, we tend to sink into our weaknesses and experience things like anxiety, depression, exhaustion and even sin.
We thrive when we learn to let Jesus fulfill the desires of our hearts more than anything or anyone else. As our Creator, He knows us intimately and He only gives good gifts to His children. After that, we can enjoy His generous gifts from the world in healthy, godly ways. And that includes living in cooperative and complementary ways with others.
Psalm 38:9 You know what I long for, Lord; you hear my every sigh.
Matthew 6:33 Seek first the kingdom of God and his righteousness, and all these things will be added to you.
Around here, we’re trying to be attentive to what each other needs and have each other’s backs. That starts with praying for each other and then includes examples like these:
Giving each other permission to express and satisfy soul needs (harder for kids and some temperaments)
Inviting each other to rest or take personal time (private places, dedicated time)
Leaving a bedroom or office door open or shut (or putting a sign on the doorknob) showing kids/others when interruptions are welcome and when they are not
Defining or redefining roles and responsibilities according to how each person is most energized
Making our home a safe space to process things like grief and disappointment
Trying to call out the positives at least four times as often as we correct/coach/redirect
Learning cooperation and teamwork but relying on Jesus first and foremost (which also prevents us from putting unreasonable demands on each other)
In a cooperative environment, we are attentive to one another and help each other recognize and meet needs in healthy, God-honoring ways. #CooperativeCocooning
These verses have been so helpful to me in the last several days:
Psalm 94:19 When the cares of my heart are many, your consolations cheer my soul.
Psalm 139:23-24 Search me, O God, and know my heart; Test me and know my anxious thoughts. Point out anything in me that offends you, and lead me along the path of everlasting life.
Here are some more specific things that are working for me and my family:
Keeping track of my own thinking patterns and paying attention to shifts in my mood so I can take my thoughts captive to Christ (2 Corinthians 10:5)
Listening to LIVE broadcasts that keep me feeling connected in the world
Having LIVE conversations that connect me emotionally to those I care deeply about (Note: turn-taking chat apps meet a different need than live conversations on the phone, FaceTime, Skype, Zoom, etc.)
Finding a person who gives me energy and spending a few minutes chatting
Texting in group chats with extended family who are geographically separated
Pacing my breaks (and what I do with those breaks)
Baking with Carly or playing a game
Going for a drive (sometimes getting gas or car wash)
Taking a prolonged shower or bath
Rearranging furniture or moving to a different room from time to time (change of environment)
Putting out some decorations for Easter or spring (you could make some new ones too!)
Building a fort
Getting off the couch and having a dance party
Spring cleaning
Playing favorite games (egg hunt)
Planning and doing a special project (We’re hoping to surprise our neighbors’ kids with an Easter Egg Hunt blessing. Hopefully, they won’t read this blog until Easter Monday!)
We thrive when we learn to let Jesus fulfill the desires of our souls more than anything or anyone else. After that, we can enjoy His generous gifts from the world in healthy, godly ways. And that includes living in cooperative and complementary ways with others.
What’s working for you?
Tell us in the comments of this post about how your family is trying to make the best of this highly remarkable experience of life.
During this season of social distancing, we can learn rest in Jesus most of all but also meet each other’s soul needs in ways that are complementary and cooperative too.
You can watch Pandemic Edition #1 of REAL TALK livestream here.
Lisa Jamieson is an international speaker, author, caregiver advocate and pastoral counsellor. Her passion is spurring special needs families toward growing intimacy with Jesus and thriving relationships with each other. She is co-founder and executive director of Walk Right In Ministries and leads the Minnesota Disability Ministry Connection. Lisa is a member of the Sarasota Academy of Christian Counseling certified in Christian temperament therapy. Her books and Bible studies include Jesus, Let’s Talk which was inspired by her daughter, Carly, who has Angelman Syndrome. Lisa and her husband, Larry, have been married for 31 years and have three grown daughters.
A few months ago, I posted this statement on Facebook:
“I don’t believe it can be overstated how stressful and wearying it is being the parent of someone with significant developmental and medical needs. There is also unspeakable joy. But make no mistake that this life is OFTEN more than overwhelming. I speak for my own family and many others when I ask you to pray hard and regularly for anyone you know living this life. We need your persevering friendship and sometimes help. We wish we didn’t need help, and very often we don’t even know what to ask for. But we can’t do this alone. Practical, emotional and spiritual encouragement is a gust of wind in our sails.”
Lisa Jamieson’s Facebook post | April 2017
This got a reaction.
Most people who responded were caregivers themselves. They resonated deeply with the sentiments I expressed. The rest of those who responded were encouraging friends whose comments usually indicated that they were praying for me.
I was grateful for the prayers but even more moved by the hunger among caregivers to feel noticed and heard. Since so many caregivers practically begged me to get this word about their (our) chronic stress out more broadly (on their behalf), I posted again the next day with a very personal and rather lengthy explanation about my own chronic stress and why I talk about it the way I do.
I wasn’t expecting to post it, yet again, on my blog. But subsequent conversations suggest it deserves one more share. So here goes…
WHY DO I SHARE WHAT I SHARE? AND WHEN I DON’T SHARE, WHY NOT?
There are a variety of reactions I encounter whenever I talk about how chronic stress is affecting my family and others in intense or complicated, often long-term circumstances.
Obviously, not every reaction is helpful to a family like ours. But trust me, I understand most people are well-meaning and I’m very hesitant to criticize any reaction — I mostly appreciate ANY reaction (except apathy). Larry and I don’t expect perfection in understanding. But we do hope people at least care. And try. And we hope people won’t over-simplify what we are experiencing. That feels like invalidation of something that is very big and very real for us.
Some people want to better understand this so I’m going to try and explain more about it today and I’m going to be pretty transparent.
I know that I’ll be articulating perspectives that are not just my own because I’ve had emotional discussions with others about this very issue. One of those conversations was as recent as this morning when a friend called me from another state about the post I shared yesterday.
Yup. This hit some nerves.
When we don’t talk about our challenges very often, it is not uncommon for people to think that all is well. Some others who have some idea that life is always hard over here at the Jamiesons think we are just trying to keep a “stiff upper lip” or are wanting to be self-sufficient in our challenges. Some people believe we are trying to be “missional” in an effort to “look” put together with the power of God.
Seriously, we’re not trying to hide anything or even prove to anybody that “God’s got this.”
Don’t get me wrong, I certainly hope my life points people to Jesus and shows that God is fully able, accessible and worthy to be praised. Because He most certainly is. I don’t know how anybody lives through a crisis like this without a relationship with Jesus Christ. But that’s not what underlies my philosophy (or for lack of better word, strategy) for deciding when and how to share the inner realities of my situation.
Of course we hope people will somehow see Jesus in us — whether through how He meets us in our challenges or for any other reason! Don’t we all want to see evidence that the living God is real? But the way I express my stress publically is way more selfish than that. Larry and I are, first and foremost, trying to live in a way that helps us thrive as individuals, a couple and a family. In the process. We just want to live within relationships that are REAL.
I gave up trying to tough things out a long time ago. I do just exactly what I have to do every day to survive and thrive. So, trying to look “good” or more “Christian” is far from the reality for me and Larry. We always want to be authentic with people and we highly value people who are willing to be real with us. In truth, there are a whole host of reasons why I talk about our specific challenges or overwhelm rather infrequently compared to how often we are actually struggling. For today, it’s important to me that you know WHY. God seems to have prompted me to just lay it out here for whoever cares.
“I don’t want to look normal for your benefit. I want it for me. So even though taking a shower, fixing my hair and putting on a cute, comfy outfit to go out in public takes the alignment of stars at my house and risks masking a reality about how much I need your prayers, help and friendship — I’m going to risk it.”
So, in no particular order, these are just a few of the reasons why I personally don’t talk often or widely about the specifics of my personal stress…
I’m not always in touch with the reality of how extremely stressed out I am.
I function on autopilot a lot.
I don’t want people feeling sorry for me.
I have all the same stresses everybody else does and would really like those to be recognized as part of who I am too.
A whole lot of people would rather just believe that “it’s all good” over here.
Some people just want to cheer me up.
Some people tell me, “you deserve to feel sorry for yourself.” This isn’t helpful for me. I appreciate the attempt at empathy but I don’t believe this is right thinking and it is rarely helpful for me to go to that place.
I spend a lot of my daily energy trying to pace my energies and emotions. That means I have to spend proportionately high amounts of time with Jesus and in prayer. Since my physical body is increasingly deteriorating due to Carly’s 24/7 cares, my age, long years without adequate sleep, etc., I have to give some priority to taking care of me as best I can (which is never really enough). I need more naps than the average person because I spend a lot of time awake at night. I need to serve others. It’s a great outlet for me — gives me a sense of purpose and keeps me from feeling consumed with my own challenges. Needless to say, all of that doesn’t leave a lot of time left over for complaining and explaining.
Sometimes I’m just plain tired of explaining.
I don’t like people dismissing me as a “drama queen.”
I get tired of feeling like I have to be one of the world’s “teachers.”
I weary of the disappointment of trying to build understanding and having my hopes and needs for resonance dashed when people don’t “get it.”
I don’t want to get my hopes up that someone will care (reach out) only to be disappointed.
When my situation is most overwhelming, I feel unable to explain my situation or emotions. My mind and heart feel too complicated to explain. So, if I feel able say anything at all, I just try to articulate even one thing I know people can pray about or help with. But that can give the impression that just one thing is weighing on me. (Yet, rest assured, whatever I am saying out loud is probably just the tip of the iceberg with lots more behind it.)
It helps keep me out of depression and those woe-is-me places if I focus on what is going well and what I’m grateful for.
Focusing on Carly’s strengths gives her the best shot of reaching her potential.
Focusing on Carly’s strengths (instead of why she’s making things hard for me) feels more respectful to her.
Any time I talk about how hard it is caring for Carly, I risk undermining our ability to ever find or hire respite helpers (because people think they won’t be able to handle it).
I don’t want to worry my family.
I don’t want people to quit sharing their own concerns with me because they feel badly that their own issues may seem insignificant next to mine.
I often feel misunderstood and since I’ve been misunderstood a lot in my life, I avoid that pain.
I don’t want to feel analyzed.
I get tired of talking about the same thing. Being “that person.” Sounding like a broken record.
When you boil it all down, this is probably the biggest reason why you don’t regularly hear about or see the degree of my stress:
I WANT TO LOOK AND FEEL AS NORMAL AS POSSIBLE.
I don’t want to look normal for your benefit. I want it for me. So even though taking a shower, fixing my hair and putting on a cute, comfy outfit to go out in public takes the alignment of stars at my house and risks masking a reality about how much I need your prayers, help and friendship — I’m going to risk it. Because for a couple of hours, I’m happy to be clean and out in a “normal” world feeling like a “normal” human being with a “normal” life. Any illusion is for me. Not for you.
And here’s one more thought for you to chew on. If I wrote about this regularly, many of you would have stopped reading my posts a long time ago. You’d be too overwhelmed, irritated, or numb. My perpetual drip of whining would wear you down and lose its oomph. (For some people, it already has. They’re not even curious and are no longer reading this right now.)
So, consider this “rant” my way of trying to get your attention and urge you to remember there are friends around you struggling mightily with chronic hard stuff — whether or not they look like it or sound like it. Please don’t check out on them, whether they are good at how they handle their communication or not. (Doing this well is hard and even harder when you’re stressed out and/or sleep deprived.)
Thank you for listening. I’ll write again soon.
But not too soon.
NOTE: This blog is a repost from an “Open Letter” Lisa shared on Facebook in April 2017.
Maria Palomino recently spent a few hours helping to update and organize the Lending Library list for Walk Right In Ministries. As she worked, we had fun chatting about the value of certain books and it was interesting for me to learn which books caught her personal interest. Since she’s a young adult, I was particularly impressed by her eagerness to learn and inspired by her hunger to grow in faith.
One book in particular was intriguing to Maria so she asked to check it out and read it. Not long after, it led her to an opportunity for ministry.
Maria wrote:
I have been a Christian ever since I was 12 years old, however I never thoroughly dove into the scientific and archeological evidence regarding what I believe, or how to argue for the validity of the Bible. So when I noticed the book Surprised By Faithby Don Byerly in the WRIM Lending Library, I was intrigued. I knew that when I was done reading this book, I would need to share it, specifically with those who are consumed by questioning Christianity and the Bible as being absolute truth in comparison to other religions and texts.
I actually ended up using this book for my English project and presented the information in front of my class. The student teacher came up to me afterwards and told me he was a Christian as well. Coincidentally, we both had Hebrew tattoos on our left arms! Anyway, the minute that I finished the book, God placed on my heart the name of a friend of mine who was going through exactly the same kind of questioning. I texted his dad right away and encouraged him to get his son to read Surprised By Faith as part of his homeschool curriculum. He ordered it right away, read it himself, and then passed it on to his son who is still finishing it.
I have faith that the Lord will use this book as a vehicle to expand His kingdom and I am excited to hear back from my friend!
It is a privilege to see how God used Maria’s service to this ministry by providing her with an opportunity to encourage a friend in his faith!
Thank you, Maria, for enthusiastically and courageously sharing this story which helps us to see the presence, power and goodness of God among us.
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To learn more about what is available in the Walk Right In Ministries Lending Library and find out how to borrow these FREE and valuable resources, contact us at info@walkrightin.org for a complete listing and our simple lending process.
Families impacted by disability often feel isolated. And church must be the place where they belong, where they are encouraged, where they find hope and healing. There are a growing number of churches that are being intentional about caring for and fully engaging with people who have atypical lives. These churches are doing more than just “being nice” to people with special needs. They are actually engaging in life with each other. They are resisting fears. They are stepping in faith despite concerns about being over-stretched. They are taking risks to be engaging. They are discovering that God changes lives and enriches churches when they care for and include each other, especially when life gets the most challenging. Accessibility isn’t just about ramps, elevators, special seating in the sanctuary and gluten free communion. The church—and Jesus most of all—needs to be emotionally and spritually accessible to all people. And that involves more than just being greeted nicely by an usher. Jesus was much more than just NICE to people. He fully engaged with them—their questions and their pain. He cared that people experienced belonging in His family and wanted them to feel assured they had tremendous value. Very often, Jesus physically reached out and actually touched hurting people. In fact, Jesus spent a lot of time hanging out with people who were on the fringes, the hurting, the weak, the weary, the “different,” the ill, the disabled, the unpopular, the unglamorous and those who were seeking hope (even when they weren’t really sure where to look). What Jesus always did was engage in love and his foremost concern was and still always is for us to BELONG with Him and to have HEALTHY SOULS.
