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Being the primary caretaker to a special needs child and a husband with his own set of mental challenges is exhausting. More than exhausting, it’s one battle after another. It feels like it never stops. With each year that passes, the fatigue, weariness, and hopelessness settles deeper into my soul. We’ve come so far and made so many improvements, but the issues are the same, and new ones pop up.
The stakes in each battle seem higher. No longer am I worried about a preschooler or five-year-old spitting at his teacher or shoving kids at the playground. I’m worried about the time he didn’t get his meds at school and “verbally threatened physical violence” to his teacher and a peer. I’m worried about things like a “threat assessment” going on his permanent school record. And when I get a call from the school with a recorded message about how a child brought a knife to school, I don’t blink an eye when a friend and fellow parent texts me to ask if it was my son. I’m relieved to tell her, no, thank God. Not my kid. Not this time at least.
One week ago I was living in bliss. I had the blessed opportunity to go on a special-needs mama retreat held by A Mother’s Rest. AMR facilitates retreats by networking with bed and breakfasts around the United States who open their doors at reduced rates to give special needs moms and caregivers a safe and comfortable place to do ABSOLUTELY NOTHING for a weekend. Championing the hashtag #sleepmatters, AMR sets itself apart from other retreats (like the Happy Mama Retreat) by having a retreat with no schedule, no speakers, no sessions, no workshops. It’s just exhausted moms alone in their rooms.
It. Was. Glorious.
The first two days I celebrated my “freedom” by doing things I love, kid-free, with no worries about rushing back to my family or worrying about who needed medicine or food. I went shopping. I went ice skating (3 times). I saw a movie all by myself. I ate a pack of Twizzlers for dinner. I got my hair cut. By the third day, I was pretty exhausted from all that doing and spent literally the entire day (Mother’s Day) in bed, minus about 10 minutes to eat breakfast and 30 minutes to run out to the grocery store for a salad and sparkling grape juice. I watched gymnastics, took at nap from 10am to 12pm, then binge-watched American Housewife the rest of the day. I spent so much time in bed that weekend that my back was sore!
If I weren’t me, I would totally be jealous of me too. If you are feeling that way, then go visit A Mother’s Rest and sign yourself up for a retreat STAT!
My family miraculously survived without me. My amazing mother-in-law gave up her own Mother’s Day bliss to step into my shoes for the weekend. She took my husband and my boys to the beach for two days, cooked for them, gave Ezra his medicine, and got the boys off to school without too much of a hitch on Monday morning.
When I returned Monday afternoon, I honestly kinda-sorta maybe a tiny bit actually had missed them. I worried about my husband the most. I knew that my kids were in glorious Grandma-land bliss. I was right on the money with that one, because Ezra’s first words to me were, “I thought Grandma was picking me up from school!” and LB’s first words to me were, “I WANNA STAY WITH GRAMMA!” It was comforting more than it hurt because I knew they were okay without me.
Tuesday, it was back to reality, full-swing. And reality hit me HARD.
Knock-down, drag-out battle hard.
And by Thursday, I was sitting there across from our new Christian counselor – with tears streaming down my face once again – feeling as though my family was literally falling apart.
She gave my husband some things to work on, then turned to me. “Aprille, we need to get you more time for yourself and your family members outlets outside of you.”
And so I recounted between my tears how I had just spent THREE DAYS BY MYSELF and then I came home and not 24 hours later I was feeling like I couldn’t do it anymore.
She looked at me with a tilt of her sassy, African-American head and a half-smile and and said, “But girl, remember who you battle! You were riding high and Satan couldn’t have that. Satan hates the family, and he’s doing everything he can to destroy yours. He was gonna hit you hard and he sure did!”
This is where I have to take a brief detour to explain a little bit of my personal battle and experience with the topic of “spiritual warfare.”
Fundamentalists are BIG on spiritual warfare. The teaching I had about spiritual warfare (demons, possession, oppression, Satan, etc.) was so prevalent that it was a major contributor to my childhood anxiety. I was scared all the time – not just of the normal kid-stuff that kids get scared of – but also of the invisible, spiritual dangers that were lurking everywhere. The demons that were trying to get me to sin all the time, the devil that was prowling around like a roaring lion – seeking to devour me.
When I was 15, one of my brothers joined Wicca and it just got worse from there. The terrors became more and more real as my family learned about his new religion and battled (with prayer and fasting) things like the “spirit guide” (aka “pet demon”) he kept in the corner of his room, which was just across the hall from mine.
One time, I was sitting in church and I thought I audibly heard a demon call my name. It was the first time I had a panic attack.
I had (what I now know were) intrusive thoughts that I was going to call out to Satan. My stomach churned EVERY TIME we passed the cemetery on the way to our church because my intrusive thoughts were telling me that if I wasn’t careful, I was going to call out to the dead and try to “cross over” to them.
I had so much anxiety that to battle insomnia, I would lay in bed at night clutching a tiny orange Gideon’s New Testament to my chest, either singing hymns or repeating the words, “Dear Jesus, please protect me!” over and over and over. If I woke up in the middle of the night and the New Testament wasn’t still in my hands, I would panic.
No sixteen-year-old should have to live this way, but it was my reality for the better part of two years.
Looking back on this time…well…I prefer not to. But when I do, I am honestly unsure what was real and what wasn’t. I know spiritual warfare exists, but did it exist to the extent that I believed it did then? I can’t really answer that question.
What I do know is that the further I removed myself from fundamentalism the lower my anxiety (about spiritual things) has gotten and the less I attribute every little thing to the demons lurking around every corner. I may have insomnia on occasion – but it’s because I’m worrying about the mounting laundry pile, not whether I’m going to call out for Satan in the middle of the night.
That said, the words of our new counselor, “Remember who you battle!” were a much-needed reminder that there is sometimes more to the story than what we can see.
I recounted this phrase to a Christian friend and pastor’s wife who is also a foster parent trying to gain permanency to adopt their sweet foster daughter. She nodded her head and said that EVERY time they are getting ready for court, they have the “craziest stuff” happen to make things leading up to their court dates more stressful.
I recently downloaded the YouVersion app so I could do Bible studies with people from my church – something our staff has encouraged. I haven’t even logged into the app in over a week, but I still get notification every morning about the “Verse of the Day.”
With the phrase, “Remember who you battle!” still bouncing around in my brain, I opened my app and read Ephesians 6:10-17 for the first time in years. These verses are oh so familiar – passages I memorized in grade school and was quizzed on countless times. But I read them anew, through the lens of special needs mama and caregiver:
Finally, my brethren, be strong in the Lord, and in the power of his might.
Put on the whole armour of God, that ye may be able to stand against the wiles of the devil.
For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.
Wherefore take unto you the whole armour of God, that ye may be able to withstand in the evil day, and having done all, to stand.
Stand therefore, having your loins girt about with truth, and having on the breastplate of righteousness;
And your feet shod with the preparation of the gospel of peace;
Above all, taking the shield of faith, wherewith ye shall be able to quench all the fiery darts of the wicked.
And take the helmet of salvation, and the sword of the Spirit, which is the word of God:
I let the words pour over me. I even looked up a few definitions on Blue Letter Bible. (What in the world is a “principality” anyway?)
I have more questions than answers when it comes to the intersection between God’s sovereignty and the brokenness of this world – especially where mental illness and disability is involved.
I don’t think I’ll ever have answers to these questions until heaven.
But what my counselor and these verses reminded me of was this:
The battle is not just for inclusion and understanding at school.
The battle is not just for my child’s heart to be open to the truth of God.
The battle is not just for healing from abuse that both my husband and I have endured.
The battle is not just to find the right combination of services, therapy, and medication.
Our battle is part of the bigger battle between good and evil. Between a God who is good and an enemy who wants to destroy everything God. Between a God who created male and female and the family to work in harmony and an enemy who wants nothing more than to see the family destroyed by confusion, distrust, and destruction.
So what’s a special needs mama and caregiver to do in the face of this battle?
Gird yourself with truth
Pick up the shield of faith
Be strong in the power of His might
Gird yourself with truth, because I tend to worse-case-scenario everything. I’m a long-term thinker and sometimes that takes me out of the moment and has me focusing on the future and fears that aren’t relevant to the here and now.
Pick up the shield of faith because faith, more than anything, are the only things that get me through most days.
Faith that God is good, even when life is not.
Faith that it will get better.
Faith that God is working in ways I cannot yet see.
Faith that God loves my family and wants to see us succeed.
Faith that our support network cares, even when I feel forgotten and unloved.
Faith that everything will be okay.
This faith is my shield against the panic attacks, against the meltdowns, against the fights, against the screaming fits, against the negative school reports…against the hopelessness when my son tells me he has no friends and that’s why he made up an imaginary wife.
And be strong in the power of his might:
Because my strength, power, and might was depleted years ago. It is only by His that I keep going.
Dear fellow special needs families:
Remember who you battle. Remember that this is part of a bigger war, and that ultimately, GOD will prevail. Good will win. Healing WILL happen. And we are on the winning side.