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.
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.
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.
Jesus said “I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” John 16:33 (NLT)
We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. Romans 5:3-5 (NLT)
2. God remains your most faithful advocate.
The Israelites continued to groan under their burden of slavery. They cried out for help, and their cry rose up to God. God heard their groaning, and he remembered his covenant promise to Abraham, Isaac, and Jacob. He looked down on the people of Israel and knew it was time to act. Yes, I am aware of their suffering. So I have come down to rescue them.”Exodus 2:23-25, 3:7-8 (NLT)
So Jesus told them this story: 4 “If a man has a hundred sheep and one of them gets lost, what will he do? Won’t he leave the ninety-nine others in the wilderness and go to search for the one that is lost until he finds it? 5 And when he has found it, he will joyfully carry it home on his shoulders. 6 When he arrives, he will call together his friends and neighbors, saying, ‘Rejoice with me because I have found my lost sheep.’ 7 In the same way, there is more joy in heaven over one lost sinner who repents and returns to God than over ninety-nine others who are righteous and haven’t strayed away! Luke 15:3-7 (NLT)
And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. And the Father who knows all hearts knows what the Spirit is saying, for the Spirit pleads for us believers in harmony with God’s own will.Romans 8:26-27 (NLT)
3. You are never alone.
So humble yourselves under the mighty power of God, and at the right time he will lift you up in honor. Give all your worries and cares to God, for he cares about you. Stay alert! Watch out for your great enemy, the devil. He prowls around like a roaring lion, looking for someone to devour. Stand firm against him, and be strong in your faith. Remember that your family of believers all over the world is going through the same kind of suffering you are. In his kindness God called you to share in his eternal glory by means of Christ Jesus. So after you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation. 1 Peter 5:6-10 (NLT)
Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you.” Deuteronomy 31:8 (NLT)
4. When you suffer, God’s comfort will be multiplied to you and through you.
All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. For the more we suffer for Christ, the more God will shower us with his comfort through Christ. 2 Corinthians 1:3-5 (NLT)