There are times when I walk around under siege. I know that can happen to anyone at any time. I also know it happens to families of children with chronic health care needs. There are diagnoses for this kind of thing–call it what you must–anxiety, PTSD, medical trauma–but the result is the same:
It’s hard to tell at first because I’m walking and talking and eating and going to the grocery store/school/church and working and driving everyone to and fro–but my fuse is shorter (than usual), my freak-outs go to mach 10 in the bat of an eye, and the things that set me off are trivial–deep down, even I know it’s not worth it and yet–why am I yelling?
And so it often goes like this until a beloved friend or my spouse might point it out–”hey, what’s got you triggered?” And more often than not a scene comes flooding to my mind, a feeling of powerlessness, a moment of despair and questioning, “Is God really good?”
During a recent unrelenting siege, when my husband asked me that, he thought it might be a terrible choking spell my daughter had had the day before. We’ve been really scared for her this year because she is choking on all of the essentials in life: food, liquids, meds, and her own saliva. She has Rett Syndrome and, par for the diagnosis, as soon as we get one symptom managed, another one flares up for the spotlight. We’ve had to make some decisions about feeding interventions…but that’s not what had me wrapped around the axle.
In early Spring all of our children caught a nasty virus. Queen Bee had it the most mild, thank you Jesus, but she still wasn’t feeling well. She was napping one afternoon and I went to check on her. I don’t mind her sleeping it off like any other kid but if she sleeps too long I like to take a closer look. She’d had a fever, her seizures had been more frequent and we’d been adjusting her meds.
I walked into her room and I saw her on the bed stretched out in a perfectly straight line–a rigid line. I could not see her chest moving up and down. Her skin was deathly pale. Her eyes were half-open and glassy.
I said her name. She did not stir. I shrieked her name. She did not budge. I yelled her name and shook her shoulder…and she cracked a mischievous smile without moving another single bone in her body.
She does think it’s funny when people freak out.
“Oh baby! Goodness, you stinker!” Ha, ha, ha. I wrapped my arms around her and she smiled placidly. I’d probably caught the tail end of a seizure but, no harm done. And then we moved on with our day. I did pause and put a hand on my heart and feel it beating, made a comment to another child who was wondering what all the fuss was about, and took a deep breath to “shake it off” but then I got caught up in something else.
There is always something going on next.
I wrote about it to my moms group, I posted it on Facebook, I told my husband–all a matter of course. I told several friends. I told my therapist and my pastor and my mom. Ohmygosh that was terrible!
But I wasn’t facing the real, terrible awful. The trauma of finding my daughter, thinking she had passed away, and the feelings I felt in that moment were all lost on me.
Until the ask, “Hey, what’s got you triggered”…I thought she was dead, so I died, too.
And I felt powerless, all over again. And I experienced that same moment of bone crushing grief. The whole thing lasted about 90 seconds but it felt longer and it was broken into pillars of time, heavy moments, moments I can easily feel in my chest several months later.
I found her…
Moment–am I imagining this? thisfeelslikeamomenticantstop
Flash: White hot light of terror.
I said her name…
How the hell will I ever live without her?!
I will miss her so much. I want to crawl into a hole and die right now.
Flash: White hot moment of grief.
I shrieked her name….
Moment–so this is how it happens.
I’ve wondered for ten years how I might lose her.
‘She died in her bed’ like they so often say?
Could I have stopped this?
Flash: White hot moment of comfort.
I have always wondered if Jesus would really meet me in my moment of need. Does He really mean it when He says that those who mourn are Blessed?
I have a tiny reference point for an answer. The answer is YES–in a moment, perhaps only enough to get me to the very next moment and no further–there was something given to me. Because terror gave room for grief which gave room for something I could never provide for myself: divine comfort. It was a flash, but I experienced it.
Except that I forgot to carry it forward and I ended up under siege. The antidote to all my anxiety and fear and powerlessness was not logic–oh she’s fine, false alarm— or counseling–let me tell my support system all about it and enjoy their kind and loving words— or even faith–we trust you God.
Those things help, of course, but they don’t bring relief from the “constant, low-intensity conflict.”
No, it was comfort all along. It’s the promise of comfort that brings me out of the defensive position and into rest. And it’s the delivery of comfort when I need it most that keeps me from coming undone.
Courtney Crow Wyrtzen discovered at an early age the power of words to inform, educate, inspire, and persuade. She lives in Austin with her husband and three children; two of them are typically developing and one of them has been diagnosed with Rett Syndrome. She occasionally blogs at www.one-row.com | Contact Courtney at firstname.lastname@example.org.