Sometimes I Beg, “Make It Stop!”

How bad is the morale at your house these days? If people are going a little nutty behind your front door, then they are much like the folks here at my house. We’re restless from quarantine. We’re overwhelmed by news and social media. Like most of you, we’re trying to learn new things and make the best of circumstances. But it sure can be exhausting.

My own heart cries out for relief. But this season has been especially hard on our daughter Carly. She is 22 years old with Angelman Syndrome. The last few months have brought her great confusion, boredom, loneliness and frustration. Bless her heart, she is learning to adapt. But she continues to have episodes of negative behavior and her sleep has been more irregular than usual. That means mom, dad and respite staff are tired too and frequently finding ourselves at the end of a rope.

Trying to manage Carly’s anxiety and keep her caregivers content can feel like another full-time job for me. I’ll admit to great impatience in this area because I’m a mom who needs a lot of independence and solitude. I believe I may even be inclined to take on more projects than I should sometimes because they feel like justifiable excuses to escape the weight of certain responsibilities. I confess to sometimes avoiding my role as caregiver and consistently pulling my weight in managing morale at my house. Because I have a servant-hearted husband, I can inadvertently take advantage.

Of course, each of us has our own strengths and weaknesses. So it’s always a good idea to shape roles and tag-team responsibilities according to what best fits each person’s strengths. Still, we have to pay close attention to honoring each other’s needs and energy levels with partnership and grace. Larry and I work at being a complement to each other. But when tensions start to rise, we have to go back to the basics — understanding and cooperating with the unique needs that each person has in this caregiving family.

The road to relief and carrying lighter burdens starts with having a clear and accurate diagnosis of our own unique needs. Each of us needs to recognize, “What is the root of my longing?”

It’s tempting to blame the quarantine for everything. No doubt, we all want it to be over! Yet, in truth, it’s not necessarily that we’re longing so much for the end of quarantine but that we have deep inner hungers for things like:

  • More freedom, control or space
  • More “real” connections to people
  • More interesting things to do
  • Times for quiet and times rich with activity

With or without a quarantine, Carly needs these kinds of things in varying degrees. We all do. Now, the isolation and limitations have heightened our existing sensitivities. This season can actually be an opportunity to become more self aware — as well as more aware of the core needs of others.

Proverbs 13:12
Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.

At our house, we are regularly seeking ways to help each other tend to their soul’s longings. It requires more creativity but we are discovering that it is often possible to find reasonably satisfying ways of feeding our soul cravings despite the limitations.

Moms and dads can help kids develop awareness of their true longings too. What a powerful life skill we give them when we do this! These two things lie at the heart of effective self care:

  • Learn to take the longings of your soul to Jesus and experience His presence, power and goodness.
  • Identify healthy ways to meet your deepest needs so you don’t start seeking harmful/sinful ways of “medicating” those longings.

My husband and I keep learning how helpful it is to study our family and learn what uniquely energizes each of us. Here are some examples that God has opened our eyes to see:

  • Carly calms considerably when she can crawl into her dad’s lap and listen to a specific music playlist he created for her.
  • Carly likes to be busy with frequently changing activities so we’re finding ways to keep her schedule satisfying and we’ve updated her visual calendar to show new images we didn’t feature on her calendar prior to quarantine (Zoom meetings, Farkle games, Dance parties, car wash, etc.)
  • Larry feels more valued and confident when we speak words of appreciation and affection into him.
  • I recharge when I have permission and opportunity to retreat by myself to read a book, take a bath or watch tv for about 90 minutes.
  • Our sense of isolation or tendencies to feel invisible are best fought through serving others, connecting with friends and family on Zoom or FaceTime, playing games together (even virtually with friends), going for a walk or weeding the garden while on the phone with a friend, worshipping via livestream with our church family.
  • Friction between Larry and I is often defused by creating adequate opportunities for intimacy.

Friends, our families are well led when mom and dad are well fed. When we work together in creating an environment that adequately complements each person’s deepest needs, we all thrive.

Be encouraged. It’s a process. My family is not perfect but we’re making progress. More and more often, I feel like the wind is at my back spurring us forward rather than blowing hard on my face and chest. Instead of feeling heartsick from leaning into the pressures of quarantine, heavy news and caregiving, I’m becoming a more intentional and creative caregiver. Honestly, this season is finally making me more reliant on Jesus than on myself.

This season is giving me a more realistic view of my limitations, boundaries, needs and dreams while growing me into the person I’ve always wanted to be — someone who is more trusting of Jesus’ power and concern for us.

2 Corinthians 3:16-18
But whenever someone turns to the Lord, the veil is taken away. For the Lord is the Spirit, and wherever the Spirit of the Lord is, there is freedom. So all of us who have had that veil removed can see and reflect the glory of the Lord. And the Lord—who is the Spirit—makes us more and more like him as we are changed into his glorious image.


LISA JAMIESON is a special needs family advocate and co-founder of Walk Right In Ministries where she serves as a caregiver coach and licensed pastoral counsellor. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Lisa’s books and Bible studies include “Finding Glory in the Thorns” and the picture book “Jesus, Let’s Talk.”

Family Update from the Jamieson “Cocoon”

In a general sense, our family is doing quite well. We have been learning to cooperatively “cocoon” during the COVID-19 crisis. That means we’re trying to be attentive to our own personal needs, sensitive and respectful toward each other’s needs, protective and compassionate about of each person’s unique vulnerabilities and just generally trying to make the most of this unprecedented time. 

We’re trying to build bonds rather than allow the challenges to undermine them. This is not to suggest that we are always doing this well. But we are trying. For all the things competing for top of the priority lists, this idea of being an encouragement to one another has been at the top of ours. And it’s helpful to have a vision for some purpose in this surreal time. #CooperativeCocooning has been a helpful goal for the Jamiesons. (Read Lisa’s article on Cooperative Cocooning.)

We actually have more help right now with our daughter Carly than we’ve had since early August 2019. In addition to Carly’s usual full-time caregiver-friend (paid staff), one of the women who worked with her until college started last fall is wanting to work now that she’s back home studying online. We are tremendously grateful that our two respite providers are considered “essential” by our Governor and that they’re willing to strictly self-isolate for an indefinite period of time. Honestly, I would be out of my mind right now without them but mostly because Carly would be out of her mind without them. 

But there’s more to it than their just being essential for Carly’s wellbeing and my personal sanity. We view Carly’s respite staff as part of this family and ministry team. We are so grateful they feel the same way. These women work behind the scenes enabling me to do what I do every day. And they are fueled by the same passion we have to see the lives of special needs families worldwide enriched by a community sharing faith in Jesus Christ. God bless them!

For all the things competing for top of the priority lists, this idea of being an encouragement to one another has been at the top of ours.
#CooperativeCocooning

Carly is gradually adjusting to the new routines. She and I are actually on Day 24 because we were home alone for several days at the beginning of this while Larry was traveling for work and Carly’s staff support was on vacation. Those first two weeks were awful. Now that we’re learning a new groove, we’ve found it very helpful to arrange our quarantine days in ways that mirror the former routines as much as possible. For example, as the girls can no longer head to the gym shortly after lunch every day, I try to break from work and join them in the family room at 2 pm when a group of students and alumni from our daughters’ former high school do a workout on Zoom. 

Each day has it’s very difficult moments, particularly when trying to manage Carly’s outbursts of anxiety, restlessness and confusion. She is used to being on the GO! She does not like this boring lifestyle one single bit. It’s affecting her disposition (rather violent at times) and her sleep. 

Since Larry and I both work from home, this season has been “business as usual” in many respects. But some things have needed extra attention in the areas where we serve. My counseling ministry and special needs family outreach demands more creativity and time during this season. Larry is working extra hours on a team helping navigate the implications of the virus both logistically and financially. Short nights and stressful bedtime routines with Carly add strain. 

Our prayer requests may be very similar in nature to yours:

  • Continued health and protection for our family. Larry and Carly are both in the high-risk group for the virus. Our daughter Erin lives near the northern California hotspot and remains in lockdown with three roommates. Our daughter Alex lives alone in a Twin Cities area condo where she has been working virtually since early March. She is holding to strict isolation standards so she can be backup care for Carly and visit us every week or two.
  • Adequate socialization for Carly and her caregivers. Carly’s weekday support worker needs a fair amount of adult conversation and deep connection so working with non-verbal Carly alone all day and going home to an introverted roommate at night means we are working harder here to complement and cooperate with each other’s needs.
  • Anxiety management  (creativity). We are adapting new activities to meet needs within the limitations and keep Carly as content as possible.
  • Sleep. Enough said.

Friends, let’s pray with and for each other!

Lord, develop in each of us more patience, perseverance, trust, hope, kindness and gentleness. Comfort us in fears and grief that comes in waves during this pandemic season. Remind us that you are fully accessible and that we can intimately share our hearts with you in every single moment — the ugly moments and the precious ones. Would you multiply the precious moments, Lord Jesus? We need You to protect and provide. Yet in sickness and in health, You are faithful. May Your sovereign purposes prevail. We want to rest in that peace. 

Thank you that learning to slow down and focus on our relationships is a gift we can receive in the midst of this season. Teach us how to be attentive and compassionate about each other’s needs and cooperate with each other to meet those needs as adequately as possible in the circumstances. Help us to seek You first and things or people of the world second. Teach us to value Kingdom things above all else, putting our hopes, expectations and disappointments in Your perspective. Energize us by the power of Your Holy Spirit to think and reach outside of ourselves. Help each person in our quarantine “cocoons” to offer their lives as a spiritual sacrifice for one another without putting too much responsibility on any one person to meet the needs of another. 

O God, please make the precious lessons of this season grow deep and long roots in all of our lives! Above all else, teach us to love you and love each other well. 

Amen

This Pandemic Season Prayer shared by Walk Right In Ministries earlier last month has also been a source of encouragement and connection for many.

You all — our WRIM community of friends and partners — are constantly on my mind and prayers. Our Board and Prayer Team just received one of the longest updates ever in our history and we consider it great privilege to pray together for all of you!

How are you fairing with the stay-at-home orders? These are tricky days for most, extremely stressful for many and actually somewhat gratifying for others. I would love to hear how your family is doing and what is working for you as you try to adapt to these pandemic circumstances. Please drop me a note at lisa@walkrightin.org or ask to schedule a video conference.

You can also read more about Cooperative Cocooning here.


Lisa Jamieson is an international speaker, author, caregiver advocate and licensed 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.

Cooperative Cocooning

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 licensed 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.

Christmas Cookies & Caregiver Connectedness

I made two batches of Christmas cookies yesterday and found myself reminiscing over how the process makes me feel connected to loved ones of Christmases past. For example, I remembered the special way my grandma stored her cookies. She kept them in tins on the floor of her front coat closet. The cookies stayed cold there because she had a mail slot in the wall that let the winter chill leak inside. I shuddered to go in there but the reward was worth a hundred shivers! As I flipped through old cookbooks, I found a note from 1994 showing we made 75 dozen cookies that year. Four families gathered with our little ones for a whole afternoon and made nine different kinds. As the kids got older, we got even more productive but the pizza bill in the evenings also got quite a bit larger.

Sweet discovery in my cookbook. Our oldest daughter would have been almost 2 years old.

Baking, in general, makes me feel more connected to my roots. As I considered which traditional cookies to make this Christmas and imagined the similarities of my process to other women in my family, I found myself cherishing those relationships and generations.

I also thought of friends. One of my girlfriends made a traditional British cookie. It was only her third Christmas in the US at the time. Another friend used salt in place of sugar in a recipe one year and we still laugh about those first confused bites of recognition. Another friend made huge monster cookies when the rest of us were making dainty and fancy Christmas morsels. She grew up on a farm with six kids. I’m sure that situation played a significant part in forming her family’s tradition. It was fun to see our unique histories reflected in the variety when everything got plated up.

The way I feel connected to my fellow bakers during cookie baking is much like the connection I feel to other special needs moms at holiday time.

When my stressors are high because Carly’s routines are out of whack or when family games are interrupted by a diaper catastrophe, I’m tempted to feel sorry for myself. Holidays have a way of shining a spotlight on the many ways my life is vastly different — more complicated and more demanding — than it is for most of those around me. I long for more freedom to experience the ease and spontaneous joys of festive seasons. And those thoughts can make me feel emotional, depressed, frustrated, guilty and different or isolated from the rest of the world.

Reality is I am not alone. There is a world full of special needs parents who know a great deal about challenges just like mine. They are in their own homes, often feeling very alone amidst the merriment too. That’s why one of my favorite go-to verses during holidays and vacations is 1 Peter 5:8-11. I am comforted that others understand my challenges and I find great reassurance that God is a warrior advocate for me.

Cast all your anxieties on God, because he cares for you. The Devil is poised to pounce, and would like nothing better than to catch you napping. Keep your guard up and resist him. You’re not the only ones plunged into these hard times. It’s the same with Christians all over the world. So keep a firm grip on your faith in Jesus Christ. The suffering won’t last. It won’t be long before this generous God who has great plans for us in Christ—eternal and glorious plans they are! — will have you put together and on your feet for good. God has you on a firm foundation.

He holds dominion and He gets the last word. Yes, he does.

1 Peter 5:8-11 (paraphrased)

Friends, let’s praise God we are interconnected around the world and through the generations! I’ll be praying for you while I bake.

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.