To The Caregiver Who Never Gets Time Off

“Be still and know that I am God.” Wait…don’t leave yet! Hang with me for just a bit, I promise this is for you. On my mind and heart this week has been the mom (or caregiver) who never gets time off or time away. I don’t know your name, but I’ve been you and I’ve been praying for you.

You have a child who needs constant care, like CONSTANT, like, you can’t go to the bathroom and have those 30 seconds of peace alone, or drink a warm cup of coffee with a satisfied sigh – a cold sip 2 hours later, with one hand occupied with your child, maybe.

No one else gets it. No one understands. Your child’s needs are so unique and significant no one else is either able or willing to care for him/her for a couple hours so you could just sleep, or breath, or step outside and look at the sunshine. You feel so alone. I feel your pain. I feel the weight you carry. I see the conflict in your soul – you LOVE your child! But you just need a break.

 And then there’s Psalm 46:10, “Be still and know that I am God” - like there’s time for that!? When your child is never still or quiet and you are on duty all day and all night, how are you supposed to find time to be still in God’s presence so you can know Him better? It feels like one more thing on our to-do list that will never get done, doesn’t it? Those impossible things that are forever out of reach.

Have you ever read Ps 46:10 and paid attention to the surrounding verses?

I’ll summarize them for you (because, of course, your hands are full and you can’t toggle to that other screen or grab a Bible right now)…there are earthquakes, mountains crumbling, landslides, turbulent oceans, flooding, nations in chaos, kingdoms failing. Then, “Come, see the glorious works of the LORD…He causes wars to end throughout the earth. He breaks the bow and snaps the spear...” And here it is, “Be still, and know that I am God! I will be honored by every nation. I will be honored throughout the world. The LORD of Heaven’s Armies is here among us; the God of Israel is our fortress.”

Psalm 46:10 isn’t a command to literally be still and spend lots of quiet time with Him. It’s not a command to do something. It is a promise that He is a refuge, fortress, strength and that He has all of heaven’s armies to help address those troubles.

It’s our job to go to Him as our refuge and then “be still.” The Greek word used there for “be still” literally means “sink, relax” it could also be said “stop striving and let go” and watch His awesomeness (aka “know that I am God). Doesn’t “sinking” and “relaxing” (it makes me think of a bubble bath) while someone else who is unconditional love, all-powerful and with legions at His command takes over sound absolutely blissful?

This verse is not a call to do one more thing. It is a call for you to stop striving and to rest in Him, His strength, His protection, His care.

On those days and nights where we feel worn so thin we think we might just wear away to nothing and we don’t even have the energy to think anymore, it’s past time for us to cry out to Him as our refuge, fortress, help, Commander of Heaven’s Armies – it doesn’t have to be eloquent, even, “help” is sufficient - and see what He does.

I’d love to hear about it. I’d love to put a name to these prayers I’ve been praying for “the mom who doesn’t get a break.” Drop me a message, I’d love to pray for you by name!

Written by Sarah McGuire

SARAH MCGUIRE IS THE MOM OF TWO BOYS AND CO-FOUNDER OF HOPE ANEW, A NONPROFIT THAT GUIDES PARENTS TO CHRIST-CENTERED HOPE AND HEALING. YOU CAN FOLLOW HOPE ANEW ON FACEBOOK HERE.

There Can Be Respite in the Sleepless Storm

It’s fitting that my son’s preferred sound to sleep with is a booming thunderstorm.  Let’s just say, college all nighters don’t even hold a candle to the all nighters my handsome little guy and I have endured together.  His sleep, among other things, was greatly impacted by the effects of his autoimmune condition called PANS/PANDAS.  Before his diagnosis and before we had a treatment plan, my forty-something year old body really struggled to keep it together during a season of difficult bedtimes, frequent nighttime wake-ups and a boy that started each day long before the rooster crows. 

I spent hours singing hymns and James Taylor songs and I’ve Been Workin’ on the Railroad on repeat, to name just a very few, sitting crossed legged in this sweet child’s darkened bedroom willing him to fall asleep.  For a long while, my husband singing Kumbaya in a slow, droning voice over and over and over again, was the only way to peace.  In a room adorned with the darkest black-out curtains they sell and the most realistic and loud sound machine on the market, I would pray for my child's body to calm long enough for him to find rest.  And once the calm came, I’d steal away for a few winks, knowing that I’d soon be back snuggled with this little love of my life, trying to calm him back to sleep once more.

Looking back on those days, having made huge strides in the sleep department, I realize how little concern I took in my own well-being. 

Isn’t that what a mom does? 

We do what we have to, and when it comes to our children, we take on the task at hand no matter what that task asks of us. Those wake-ups that sometimes came as early at 3:45am, were followed by full and glorious and nerve-wracking days.  Days full of coffee and giggles, meltdowns and play dough, hope and worry, and the endless shuttling back and forth to preschool, gymnastics, speech, OT, or whatever that day held.  Then, those days would circle back to Kumbaya once more.

As my son has gotten older, some of those struggles, both day and night, have worked themselves out. Some we have found our way through, some are still a daily struggle, while others are brand spanking new.  I have, though, started to make a point to acknowledge the amount of stress I’ve been functioning under over the past 7 years.  I’ve begun work to heal the parts of me that this has all piled up on.  It is my nature to smile through anything I face. I often proclaim that all is well, or give a good old, “We’re hanging in there!” with a grin and a giggle.  I think in many ways that has helped me to endure the heartache of it all.  It has helped me to conceal the gallons of tears I’ve shed over watching my child navigate such difficulties, though concealing them is entirely unintentional.  What those smiles haven’t helped is in finding any relief from the stress I’ve been under.  

Self-care was a term that kind of bothered me, as if it was this luxury others were afforded, or even an indulgence.

Who has time for that? How could I even squeeze that in?  I’ve learned now that we all have time to care about ourselves and I can squeeze it in.  It is not indulgent to care for the mother of my children.  It is vital.  It can be as small a start as just taking a multivitamin. It can be scheduling an appointment to walk around a park for an hour all by yourself.  It can be reminding yourself of the interests you had before things changed in your life.  I have found that visiting with the old me, for a moment or two each day has done wonders for my stress level.  I wish I had made a point of it sooner, when I felt buried in worry.  It’s okay, though, because it’s never too late to pause and re-evaluate the state of our experience.  We can find peace even during these hard moments in life, even during the loudest booming thunderstorm.

Written by BreAnn Tassone

BreAnn is a wife and mother to two beloved children.  Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate.  They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia.  She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry.  She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.

When I Am Just So Exhausted

“Come to me, all you who are weary and burdened, and I will give you rest.   Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.” (Matt. 11:28-29, ESV)

Have you ever been through a season in your life when you were constantly tired? As a special needs parent, I believe it happens to all of us on a fairly regular basis, however I recently experienced a time in my life when it seemed as though I could not get any rest at all.

My son had just come through a relatively serious surgery and recovery process, for which my wife took a medical leave from her job to stay home. While she was able to support our son at home, she quickly burned herself out on the level of daily care she was finding that she needed to provide.

I certainly did my best to support her when I was home, however that also meant that as a teacher I was putting my various schoolwork on the back burner. The only time I was finding that I was able to actually get any work done was when everyone was asleep, which meant that some nights, at least on the weekends, I wasn’t getting much sleep.

I thought to myself, “Where would I find the strength to get through the long sleepless nights and the even more exhausting mornings, even on the weekends, when it was challenging to just sit and have breakfast with my son.”

I reflected on what might be positive about these experiences, and what gifts might be in these challenging moments that God could be bringing now.

First, I considered the time I had to myself late at night, when the house was quiet, and although I was busy at work, I could rest in the peace of the home while locked away in the office. While at work I could listen to my favorite podcasts or pastors, catch up on news but also listen to my favorite online personalities go deep into prayer or scripture. I could write, take time to blog or use my creativity as an outlet to keep my attitude positive and feel good about myself.

Most importantly, I could reflect on my spiritual health, pray, and ask God for the strength I needed to push through, but also to surrender my need for rest to him.

 So I take advantage of the times that I have to recharge and get grounded once again in the knowing that my God carries me when I’m weak, refreshes me when I’m tired, lifts me up when I am depressed or feeling bad about my situation. He instructed us to come to Him when we are weary and heavy burdened so that we may have rest, not a temporary reprieve but true fulfilling rest. The rest I can experience even in the middle of the night when my eyes are begging for just a few minutes to be closed, I close them as I pray to be restored, and find the strength I need to complete any task in front of me.

 Written by John Felageller

John lives in Northbrook, IL with his wife Elizabeth and his son Christopher (ASD), and is currently an Elementary Teacher at a Charter School in Chicago, IL.  He is a regular contributor to Key Ministry’s Special Needs Family blog, and is both a live presenter and on Key Ministry’s Facebook page. He coordinates a Special Needs Dads meet-up in his community and works with several other local Special Needs organizations that serve both parents and children.

Connect with John on his Facebook page here.