A common concern among caregivers, especially parents of children who have disabilities, is what will happen to our children if they outlive us. And as middle age comes, depending on the degree of toll in caregiving and other life circumstances, we caregivers tend to fear that our bodies may wear our long before we actually die. What then? And so we pray a lot. As we’re able, we do some planning. Having an estate plan in place offers some peace of mind as does doing lots of documentation for those who will be inheriting the caregiving responsibilities. Our family has had many conversations about this and those are always very reassuring as well. But at the day’s end, when my body is aching and I’m weary to the bone (as they say), I’m left with taking it all to the Lord in prayer and begging him to preserve and protect my husband and I for as long has He possibly will! Today I was reading the accounts of a missionary who travelled a ship between England and China in the 1930s. The ship’s route took them through the Red Sea with full views of the desert places where the Exodus occurred. Audrey Johnson’s pondering jumped off the page at me with reassurance that God’s capacity to preserve and protect His children is not limited by our physical bodies and minds. Audrey wrote:
Probably no one who reads Exodus can fully enter into that miracle of absolute dependence upon our faithful God who revealed Himself so clearly that throughout Israelite history and Psalms this miraculous preservation and protection was never forgotten. Think for instance of Deuteronomy 29:5 (which says):
“For forty years God has led you through the wilderness, yet your clothes haven’t become old, and your shoes haven’t worn out” (TLB).
Audrey Wetherell Johnson
I want to remember this verse and the underlying promise it carries for our family too. Nothing has changed about God, His promises or His abilities. Jesus Christ is the same yesterday as He is today and forever. His character, power, goodness and accessibility remains as certain for me as it was for Moses. In fact, it’s even better because I (we) have access to God through the indwelling Holy Spirit! The very same God who so faithfully cared for the people of Israel makes the same kind of promise to me. His protection may look differently than I’m expecting but it remains dependable and will surprise me in the best of ways. Whether you are a fellow sojourner down the caregiving road with me or someone who just needs reassurance, let us be confident of this — God is creatively preparing all kinds of “miraculous preservation” for us and for those we love. Jeremiah 29:10-13 This is what the Lord says: “You will be in Babylon for seventy years. But then I will come and do for you all the good things I have promised, and I will bring you home again.For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.In those days when you pray, I will listen.If you look for me wholeheartedly, you will find me.I will be found by you,” says the Lord.” This post was inspired by the book Created for Commitment by A. Wetherell Johnson, founder of Bible Study Fellowship.
A few months ago, I posted this statement on Facebook:
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.
The Gospel answers hard questions and gives ultimate hope. The church has an enormous opportunity and responsibility to engage those questions, serve in love and wholeheartedly include people with disabilities in the life of the church family.
Paul describes the church using the metaphor of the human body. God arranged the members of the body as he chose. Some parts were weaker but indispensable and others less respectable but treated with special honor and greater respect.
(See 1 Corinthians 12:14-27.)
Doing life together well and according to the ways of Christ involves messiness. The church can not be self-preservational. Still, we all need to be patient with each other. People experiencing disability, for example, deserve to be fully integrated in the life of our churches. Likewise, people facing challenges need to be patient with the persevering church. That kind of patience is a form of grace.
I’ll never be able to thank enough the many people that have poured into our family so that we can thrive amidst the 24/7 weight of “extreme caregiving.” Some seasons have been better than others but there’s no denying that the way people have come alongside to support us is remarkable. (It should not be remarkable. It should be commonplace for all of us to have enough compassion and margin in our lives to reach out to others who are so stretched.) While I can’t fathom taking the kind of action this dad took, Larry and I (as well as our oldest children Alex and Erin) all know too well the kind of desperation that can be felt behind closed doors when things like difficult behaviors, seizures, diaper catastrophes, cyclic reflux vomiting or sleep deprivation have taken us to our wits end. My heart aches and a sense of nausea wells in me when I consider so many friends who struggle daily with deep depression and/or sense of overwhelming loneliness/isolation caring for a loved one. Our culture doesn’t value caregivers enough, doesn’t pay respite staff enough (it’s extraordinarily difficult even to find people willing to work this type of job at ANY rate of pay), doesn’t encourage enough. Yet there are shining examples of progress. For example, the heart behind Caroline’s Cart and practical value it is bringing to families is like a hug from God. We must pray for the reality of this need for community and outreach to sink in and fast. May all of us to value more highly our opportunities to encourage one another, lead lifestyles that prioritize time to support a weary friend and have courage to ask for help when we’re struggling. May we create churches that go beyond just being welcoming places to becoming places that truly ENGAGE with these families, do more than just “be nice” and actually figure out how to carry another’s burden. Lord, help us all.
Spring is here in all it’s glory and the greens seem more vibrant to me than ever before. I hope you’re seeing opportunities to soak up the refreshment of this new season! Our daughter Carly turned 18 years old this past weekend. And she’ll graduate from high school in just three weeks. For Carly this is a dramatically new ‘season’ and you might be surprised that there are some very unsettling things about this for her dad and me—things that are causing us some grief. I hope you won’t mind that I share some personal reflections about it here because I believe God has something to say about this to each and every one who is reading today. As other students head off to college, explore new jobs or take a ‘gap’ year to discover their true passions, Carly will begin a transition program a few miles from home in a building filled with several other young adults who, like her, experience significant developmental disabilities. While there will be plenty of important and enjoyable activities, a skilled and caring staff, and new friends among her classmates, there will be no typical students in that building. None. Unlike high school where Carly participated in the mainstream choir class and walked halls with typical teens, she will now be more isolated from ‘normal’ society than she has ever been before. Occasional school outings to places like the grocery store (to learn money skills), some family activities and church attendance will be the extent of her exposure the ‘outside’ world. Typical high school graduates are seeing the world open up before them; opportunities and relationships are blossoming. But for Carly, becoming an adult and finishing high school means that life will be changing in very different ways. In contrast to Carly’s peer experiences, her world is in high risk of shrinking. Unless somebody thinks creatively and takes initiative on her behalf, Carly’s opportunities and relationships will immediately start narrowing after her last day of high school. Carly is highly social. Yet she is fully dependent on others to bring her places and help translate her efforts to communicate and engage with others. Her social connections will continue to narrow unless her caregivers, church and community are intentional about optimizing connectedness for her. Carly also has gifts to share with her church and community. Yet she is fully dependent on others to make room for her and assist her in plugging in. Unfortunately, I see a world that is too naïve to notice and too busy to join us in exploring and embracing the possibilities. So I’m praying for a culture change. I’m also praying that God would give me fresh energy and vision to see the opportunities for Carly (and others like her) and show me how to facilitate connections and belonging for her in a world that doesn’t really understand what God has said:
“Those parts of the body that seem to be weaker are indispensable, and the parts we think are less honorable we treat with special honor.” 1 Corinthians 12:22-23
“God has given each of you a gift from his great variety of spiritual gifts. Use them well to serve one another.” 1 Peter 4:10
“Jesus said, ‘Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these'” Matthew 19:14
How about you?
Have you noticed any adults in your congregation who have disabilities? If you have, you might praise God for the caregiver or group home staff who have been willing and energized enough to initiate that outing! You can greet these friends — BOTH the caregiver and the resident. You can thank group home staff for their supportiveness. You can greet these friends and ask questions about their day as you would with any other friend. The few moments you spend chatting with them may be among the very few ‘outside world’ interactions they have all week.
How can you help adults with special needs in your congregation find ways to serve and increase their sense of belonging in the community? The church is not complete without these friends. More than just being friendly with each other, we must think of each other as ministry partners and invest in helping each other share in the life of the church and in life with Christ.
Does it cross your mind that there are numerous adults in your community who are invisible to you? Perhaps they are there and you just aren’t paying attention. Perhaps they are not there because nobody has made a place for them. There are a range of obstacles that keep people with special needs from attending church. Although building accessibility and transportation can be challenges, the more frequent issue is emotional. None of us wants to keep going where we aren’t noticed, cared about or feel like we belong.
We have all done things we’ve regretted. But have you ever needed a completely changed life? Today, my friend Andrea is sharing a memory about a time when she encountered God and it became a turning point for her. Together we’re praying that her story gives you confidence in God and courage to run toward Him, no matter how hopeless or unworthy you may feel.
See that little corner parking spot on the left? Five years ago, I drove under the influence of alcohol in the middle of winter and ended up in that little corner at 1:00 am. For the most part, I don’t remember driving (at least 15 miles). I crashed my car into a snowbank. Then in my attempt to get out, I ruined the transmission. Soon after I got stuck, my phone died. It was freezing and the night was a blur to me.
For three hours, I sat in the car (no car heat for most of the time) and honked my horn, waiting for someone to get me. I was in a rough part of the inner city and too scared to get out to try looking for people to help. A police officer eventually came and brought me to the Police Station. I will never forget how kind she was to me. Most would say I deserved jail time or something of that sort. I think God knew that what I needed was someone to just talk to me and love me in my mess. I was so young but had the capacity for these kind of crazy stupid decisions. That officer talked to me and processed with me. Maybe she broke all the rules. I’m not sure. What I do know is that the moment she had me call my mom to come and get me, I was already at the pit and needed Mercy more than anything. Anyway, she let me go. No charge. Because of God’s grace, I didn’t hit anyone while driving drunk. I made it out safe in the middle of the night in North Minneapolis by myself. And I didn’t even get sick from the cold! I still get freaked out—in a good way—about this story. I don’t know every reason for why I didn’t get penalized, killed in an accident or something else horrific, but I am thankful, and amazed. I drive by this spot almost everyday on my way to school nowadays…and I smile. I smile at that young girl who had a Perfect Father smiling at her and just WAITING for her to come home to His embrace. A couple of years later I did, and now I barely recognize that person. I am so thankful that I can look these horrible memories in the eye and DECLARE that these moments didn’t have the final word. Jesus came and made me beautiful. And now that’s my story.
Hebrews 10:22-23 (NLT)Let us go right into the presence of God with sincere hearts fully trusting him. For our guilty consciences have been sprinkled with Christ’s blood to make us clean, and our bodies have been washed with pure water. Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise.