Category: Perseverance

Best Practices of Refreshed Special Needs Moms

I like to feel rested. My most satisfying days end with projects checked off my list and at least 7 hours of sleep. (And, hopefully, those are consecutive, uninterrupted hours.) But most days come and go with a lot of caregiving, emails with our daughter’s case manager, disability-related paperwork, medications organized, and the desperate need for a long winter’s nap! I know you relate.

The truth is, most people don’t get enough rest or true refreshment in their lives. Special-needs parents get even less. Lots less. I’m a special-needs mom to a young adult woman with significant needs and dependencies, so I’m going to share from a mom’s perspective. Dads are right here too.

Stick with me for a minute while I play out a metaphor.

Source: 123rf

Imagine you’re a hiker with a bottle of water and 2 hours of walking, climbing and extraordinary views ahead of you. It’s hot but bearable. No specific obstacles are anticipated. Then you suddenly turn your ankle on a loose stone and go down. At first, you think it’s simple a sprain. You expect to rest a moment and then walk it off. But your ankle swells quickly and begins to throb mightily. After a painful weight-bearing test, you get nervous about whether you can make the walk back to your car safely on your own. Sensing you have only four more hours of daylight, you gather your wits and will yourself to walk. Unfortunately, frequent breaks to regroup keep your progress painstakingly slow and your water supply is running low. You wonder why you didn’t save more, in case your adventure grew prolonged. You’re weary with regrets. Fear sets in as sunset comes and goes without another hiker in sight. The parking lot is still far off. Your worries of rattle snakes, hairy spiders and eerie bats is growing and you’re feeling hauntingly alone. You drop back to the ground and realize you’ve gotten lost in the dark. To make matters worse, your water straw is now sucking air. That reservoir of refreshment seemed so much bigger a few hours ago than it does now!

Are you with me? That “hike” I described sounds like our journey through special needs parenting, doesn’t it? We’re walking life’s road with great awareness that there is beauty and excitement in the adventure but it comes with frequent setbacks that include danger, fear, confusion, overwhelm, and a host of other surprises. If you’re like me, you need ways to recharge your physical batteries, replenish your emotional reserves, and “rehydrate” your soul.

Finding time to rest and engage in effective, personalized refreshment strategies is not easy.

I find it’s helpful to start by asking myself a hard question. It’s the root question, really.

Do I trust God enough to prioritize my rest? Or do I think I need to press on hard because “if I don’t do it, who will” or “what awful or inferior thing might happen if I don’t get this or that done for my special needs child?” Friends, this kind of thinking reflects our pride and our lack of trust in God to be our ultimate Supply. After all, this is the same God who commanded the Israelites to rest on the seventh day and just trust Him. God provided exactly what they needed for food each day, but only enough for one day at a time. Anything extra spoiled overnight so they needed to trust Him for each new day. And on the seventh day, there was an exception to His pattern. He preserved a second day’s supply of food (which they prepared the day before) and gave them the opportunity for rest. God’s people honored Him best on that day by trusting Him for every necessary provision (even their very freedom) and reflecting on His faithfulness.

The caregiver in me is nourished by several things as I try to make rest a regular part of my diet. It has also helped me to recognize that I may not be able to indulge in long, slow swallows of refreshment very often but I won’t stay healthy or safe without adequate pauses for steady “sips of hydration.” It’s taken time to learn what works for me — what needs to be on my list and how I need to pace my rations. If you don’t yet know what works for you, let me encourage you to prayerfully ponder it and do some experimenting.

When I observe special needs moms who make self-care a priority, I’m always empowered with ideas and renewed commitment. Perhaps this list might confirm your own approaches or inspire some new ways for you to stay equipped for the trail ahead.

Ways to Stay Equipped for the Trail Ahead

Take 30-minute power naps. Now don’t roll your eyes. Impossible as it seems, this may be the single most helpful thing you can do for yourself and your family. That’s right, for your family. Taking a nap is not a self-indulgent thing. It is another way to serve your family. A 20-30-minute investment will give you a huge bang for your buck! Ideally, allow yourself 10 minutes to wind down then 20 minutes to sleep.

Tackle high-stress tasks promptly and when your energy is most fresh. 

Recognize that the “perfect” IEP is not the ultimate end-goal for your child.

Release yourself from the weight of responsibility to find every “best specialist” or “best therapist” or “best teacher” or “best special education program” or “best everything” in town.Briefly ask questions or research online but cover it with prayer and then trust God to point you in helpful and productive directions. When the situation doesn’t seem ideal, remember that God is perfect strength in our weakness and will work out every single situation for His good purposes.

Know what triggers your personal stress then ask God to help you discern when to take action and when to let go of what is out of your control.

Choose healthy ways to pamper yourself. It may require getting a couple hours of help from a spouse, older child, parent, neighbor, friend, or church volunteer to make this happen. This may seem improbable but it is a worthy effort to seek such support with the same vigor you put into advocating for your child. Get a pedicure, soak in the bathtub or have coffee/tea with a friend. Watch a fun movie while snuggled up with your child or spouse. Gather up the family and take a short field trip somewhere fun and different than the usual routine like bowling, a wildlife museum, aquarium, or theme park. Plan a staycation day with your family or spouse. (There are times when it is appropriate and necessary to do this with your typical children but arrange care for your child with special needs to stay home.) Eat enough protein and veggies. It helps me to focus on putting more good things in my life rather than thinking about denying myself the more indulgent treats.

Don’t let guilt and unforgiveness fester. Confess your sins quickly. Give yourself permission to be imperfect. Ask your loved ones for forgiveness and grace. Give them the same. Seek the empowering Holy Spirit for help to live well and trust God to be the strength in your weakness.

Develop a practice of gratitude and reject a critical spirit.

Get counsel for chronic grief. It’s real. Find constructive ways to talk about it. Seek out friends and professionals who will empathize and guide you biblically.

Tackle household clutter as proactively as possible. However, be on guard about giving a tidy house too much power.

Saturate your mind with the truths and promises of God’s word.  Thankfully, there are many wonderful devotionals specifically for special needs parents these days. Check out Key Ministry’s Family Resource page for ideas. One of my mainstay tools is simply a good Bible reading app with a scheduled devotional. (YouVersion is my app of choice.) And I like that I can reset the calendar when I get behind on daily readings. No guilt here!

Prayerfully establish and protect boundaries, especially as it relates to interruptions and difficult relationships.

Do one unique thing each day to serve or encourage another person. This can be as simple as a Facebook comment or as involved as modeling generosity with your children by preparing a meal or cookies together for a struggling neighbor. Generosity and kindness are terrific energizers.

Do a daily review, thanking God for all meaningful connections, activities, results and happy surprises.

Finally, whatever is on our uniquely personal lists, there are two non-negotiable and reliably effective “best practices.” These are irreplaceable for any person seeking true and lasting refreshment, special needs mom being no exception.

Repent of sin and trust God.

Acts 3:19-20 Repent therefore, and turn back, that your sins may be blotted out, that times of refreshing may come from the presence of the Lord, and that he may send the Christ appointed for you, Jesus.

Drink deeply from the well of intimate relationship with Jesus. 

John 4:14 “Whoever drinks of the water that I will give him will never be thirsty again. The water that I will give him will become in him a spring of water welling up to eternal life.”

Best Practices of Refreshed Special Needs Moms by Lisa Jamieson first appeared February 21, 2019 on Patheos.com.

Lisa Jamieson is the author of books and Bible studies including theFinding Glory series of resources and the new children’s book Jesus, Let’s Talk. She is co-founder of Walk Right In Ministries and leads the Minnesota Disability Ministry Connection. Lisa and her husband, Larry, have been married 30 years and have three grown daughters. Their daughter, Carly, has Angelman Syndrome and lives at home with them in Maple Grove, Minnesota.

Miraculous Preservation

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.

Selective Sharing

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. 

SHOCK
WORRY
APATHY
DEFENSIVENESS
RESONANCE/APPRECIATION

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.


God Changes Lives & Enriches Churches when We Fully Engage with Each Other

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.  

Whole-Hearted Engagement With Those Who Suffer Isn’t Optional

Loving and praying for each other is not optional and scripture doesn’t leave room for anything but whole-hearted engagement with people who are suffering. True, it can be overwhelming, scary and messy learning to engage in the lives of others when their needs are  complex (e.g., disability, mental illness, aging, traumatic injury, chronic illness). But people with atypical lives are not a liability to the church. They are what enrich the church! 

No situation is too big or too complicated for God.


Four Promises to Anchor and Encourage One Another During the Holidays

1. Nobody is immune to trouble but we have hope.
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)