My exhausted, swollen-faced four-year-old son snuggles into my warm-on-the-outside, yet broken-on-the-inside, body. Our eager eyes wait for nurses, who scurry past our jail-like cell window until the hour mark has passed again without any communication. This brand of déjà vu is palpable. We’ve been through this before, so now the wait doesn’t seem to carry the same excruciating tension that it did the first couple of times.
We make silly memoji videos to send to his aunties, cackling merrily at such silliness being sent and received. We talk about the random things that flit through his imaginative mind. Oh, the wonders of preschool streams of consciousness. We flip through TV channels with such intentionality that one would think we were trying to flip to the next channel in our nightmarish reality.
Finally, the door opens and bad news comes in the form of a masked woman wearing brightly colored crocs and green scrubs. We make our journey to the “upstairs”—our home away from home—and déjà vu welcomes us again as we step into exactly the same room we entered four months ago when all of this was unknown. Strange how familiarity can feel like a safe, unwelcome guest.
This time, our experienced bags slip into the cubbies with such ease. Vital checks go so smoothly. The nurses are astounded at how calm his little body is, and they chuckle heartily as he tries his best to put a smile on their faces. His day has been so sad and disappointing, full of poking and prodding, with puzzling answers to his big, yet simple, questions. Nonetheless, he strives to make others around him laugh and take notice of his infectiously mischievous joy.
With big, brown eyes that mirror my own, he carefully scans my face and asks how long we will be here. I want to snatch him up and secret him away to the safety and comfort of our own home, but instead, tears fill my eyes and my voice cracks as I answer honestly that this time, I don’t know.
For almost a week I have been pushing past exhaustion and into the “running-on-fumes” zone while I advocate for my child’s healthcare and navigate the unknown maze of his chronic illness. Our nephrologist finally comes in, days later, to let us know that she’s “got this” and that we don’t need to bother with a second opinion because they’ll prescribe the same course of treatment she is pursuing.
At this point, these words are the last straw for me.
I am not panicky or hysterical about my son’s care, nor am I doubting the integrity or the intelligence of this doctor. That’s not my style. I trust doctors, but I also trust the fact that I know my son and I am able to observe the patterns his tiny body goes through with this illness. I don’t have time to coddle feelings or play the role of submissive mother. The lioness inside of me is roaring that I need teamwork, accountability, and communication. I need someone who sees that curly-headed boy lying in that hospital bed as someone worth fighting for—not just another kid with another illness.
“No more. This is all I can take,” I whisper, and with that, I begin to plan a way to break out of this hellish cycle.
Mal Arnold is a passionate Latina wife and mother who is a chaser of dreams and believes in living life with abandon. She writes to pour some of herself out for any who care to experience her heart, but she is also an avid reader, lover of old movies and going on journeys with family as well. She has seen heartache and trauma in her past and is learning to let her Maker heal her broken places.
Mal, your courage is tremendous. May the lions roar with you. May your voice be heard and valued in this fight. And may your son soon be returned to the comfort and care of his own home, his own room, his favorite spaces where love lives.