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.

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.


What’s in A Rescinded Academy Award Nomination?

We’re so quick to start kicking and screaming when things don’t go our way.
It’s tragic that the song “Alone Yet Not Alone” got pulled from the Oscar nomination list. Or is it?
An announcement was made yesterday that the Oscar nomination for the song “Alone Yet Not Alone” was rescinded.  Apparently, there was email exchanged between the song’s composer and the Academy and, no matter how well intentioned it was, the Board of Governors took action to protect the integrity of the process. 
It’s so easy to rush to judgment about why this should not have happened. For sure, it’s just plain sad.  Sometimes I think we worry a little too much about perceptions. In any case, there will be those who think this was an attempt to silence a message that points people to Jesus. This song was from a film that did a powerful and profound job of pointing people to the One True God!
Should composer Bruce Broughton have been more careful? I’m pretty sure he has some regrets today. But I’m also pretty sure He is taking comfort in knowing that God will do something really cool with this mess.
There’s something I’ve learned over the years. Whenever circumstances get really ugly, God does things with those messes that are bigger, better and more beautiful than anything I could have imagined, hoped for or done for myself.  In fact, it has been when my life seemed most broken, upside down or backwards that I’ve had my most intimate encounters with the power, presence and goodness of God. 
I think the singer of “Alone Yet Not Alone,” Joni Earekson Tada, would agree with me too. Joni, more than anyone, knows that God’s purposes always prevail. No weapon formed against God’s love and reign will ever prosper. Ever.
The message of this song could bless millions of people. How many million people would have gone to listen to “Alone Yet Not Alone” if it had won an Academy Award? How many would have listened if it had NOT won? How many will go listen to it today — people who would NEVER have otherwise gone to listen to it — just because they’re curious about this song that got pulled from the Oscar line-up? 
Of course, we’ll never know. Well, maybe Jesus will explain it to us in heaven. But for now, I trust something bigger is unfolding.  I think this whole thing is going down in a way that God is just chuckling about.  There will be people who hear this song today and in the coming days who will experience a hope and comfort — and possibly even life transformation —all because this song never appeared at the Academy Awards.
Let us pray… 
Listen to “Alone Yet Not Alone” here.


Where does that nagging ache in your marriage come from?

A few months ago I read another wonderful book about marriage.  I haven’t been blogging much lately but ran across my notes and couldn’t help but feel God’s timing might be in my posting something on the topic of marriage today. It’s my prayer that some of our readers be encouraged, spurred on and empowered by these wonderful truths from Gary Thomas as I’ve paraphrased from Sacred Marriage.
Don’t be surprised when you become disillusioned by your spouse. He/she was never intended to fully satisfy you. The marriage relationship was designed to point us to our need for Christ and form us into His image.
God delighted in giving us an exclusive relationship to enjoy with our spouse BUT, in order for that relationship to thrive, it is essential that God remain at the center of our hearts. Our ultimate fulfillment comes from God and the marriage relationship is just added blessing — not the other way around.

“As odd as it may sound, I have discovered in my own life that my satisfaction or dissatisfaction with my marriage has far more to do with my relationship to God than it does with my relationship to (my spouse). When my heart grows cold toward my God, my other relationships suffer, so if I sense a burgeoning alienation from, or lack of affection toward, my wife, the first place I look is how I’m doing with the Lord. (My spouse) is, quite literally, my God-thermometer.” (Sacred Marriage, p. 237)

PRACTICAL APPLICATION
Read Genesis 2:18 and Genesis 2:24 and thank God for the holy (though imperfect) union of your marriage.  Every time your spouse disappoints you this week, pray this prayer:
“That’s why I need you, O God!”


Prayerfully Pondering Life, Loss & Newtown

In the past few days (particularly in the wake of the tragedy in Newtown, CT), I have found it helpful to chew on these quotes and verses about life and loss.  I pray that it may be helpful to you also as you take your own heart and mind to the feet of Jesus for comfort, strength and wisdom.

The world needed a suffering Sovereign. Mere suffering would not do. Mere sovereignty would not do. The one is not strong enough to save; the other is not weak enough to sympathize.”  From How Does Jesus Come to Newtown? by Pastor John Piper. 

“We were talking about the shooting and how it is devastating. They reminded me of all the babies America kills daily in women’s wombs, yet we do not mourn over that.”  From my friend Nathan Haugen. 

 “The life that we live falls short of the life God gave us.”  From Tis More Blessed to Receive 12.16.12 by Pastor Dan Johnson.

***


Romans 3:23

For all have sinned and fall short of the glory of God.

John 10:10

The thief comes only to steal and kill and destroy. I came that they may have life and have it abundantly.

John 1:14
And the Word became flesh and dwelt among us, and we have seen his glory, glory as of the only Son from the Father, full of grace and truth. 


John 16:33

I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.

John 14:1

Let not your hearts be troubled. Believe in God; believe also in me.

John 1:12

But to all who did receive him, who believed in his name, he gave the right to become children of God.

Matthew 19:14

Jesus said, “Let the little children come to me and do not hinder them, for to such belongs the kingdom of heaven.”

1 John 4:12

No one has ever seen God; if we love one another, God abides in us and his love is perfected in us.

1 Peter 3:13-14

Now who is there to harm you if you are zealous for what is good? But even if you should suffer for righteousness’ sake, you will be blessed. Have no fear of them, nor be troubled.

Luke 2:10-11

And the angel said to them, “Fear not, for behold, I bring you good news of great joy that will be for all the people. For unto you is born this day in the city of David a Savior, who is Christ the Lord.”


***

I am empowered and comforted to FEAR NOT! No matter what circumstances surround us, God stands in authority and is the suffering Sovereign.

Hebrews 4:15-16

For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin.  Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.

Top Blog Posts for 2011!



We are looking back at WRIM Blog reader favorites for 2011. If you missed them the first time around, we hope you are blessed today!
The weeks leading up to Thanksgiving 2000 were a time of profound emotion for Larry and I.  While overwhelmed with gratitude for an experience of remarkable community support, we had also just been told that our 2 1/2 year old daughter Carly had Angelman Syndrome. The news ripped our hearts. Continued here.
I’m excited to share a really fun story today. It will take a little setting up but stick with me because this will kick your week off with a big smile. Have you heard? Story is all the rage these days. Everyone is talking about it. Your story. My story. God’s story. Continued here.
This is a very difficult update for me to write. Ordinarily, we would post something of such a personal nature only on Carly’s Care Page. But I felt prompted to share our need for prayer more publicly at this time.  Continued here.
Pulling dead flowers from the gardens one afternoon last week led me to tears and a couple days of raw emotion.  I knelt by the phlox and day lilies praying ... Continued here.
We drove to Springfield, Missouri and back to Minneapolis for Thanksgiving. It involved almost 24 hours driving and required a certain amount of caffeine. My usual “drug” of choice is green tea but that would have triggered too many stops. After peering into the cooler at the gas station for a moment, I decided on a Pepsi Throwback.  Continued here.