For years, I have not slept that deep kind of sleep. The sleep that makes a person drool, entertain whimsical dreams, and refuels a tired host.
When I sleep, she stops breathing.
Not in my head. Not in my nightmares. Not fancied up as a worry worth saving. But really, and honestly, and medically stated, stamped, recorded, and delivered. She just stops breathing in her sleep.
The last month has blistered me. Something unseen has rubbed me raw and left me limping. Even still, as I stare at her chest, watch her color, and listen to her gasp and gargle all night long – even awake and actively observing, I sometimes slip into a short sleep that guilts me.
Poppy’s sleep study results came back and they were not good. She still has obstructive and central apnea. She stopped breathing 14 times per hour during the study. She has to stay on the oxygen at night and I am to now navigate surgical options.
I will never understand why I am made to watch my own child suffer. Why I must host the fear of losing her 24 hours a day. I do not choose pain for my children – I have spent my entire adult life creating a safe place for my loves to grow. This world we were tossed into, these clothes of sadness and suffering – none of these fit.
Wednesday, our sweet friend Phoenix with Apert Syndrome, did not wake up. She was a seemingly healthy, 18 month old babe. Phoenix was about to be a big sister, she was reaching milestones, laughing, dancing, and undoubtedly the absolute joy of her loving family.
I learned of Phoenix’s passing early yesterday afternoon – and upon reading the words lost all control of my body for a full few minutes. Paralyzed by fear and with a spirit so heavy and broken that all I could do was shake.
This is not the first time one of our own has slipped silently away.
The Apert family that I have grown into in these last two years is grieving and shaken. These beautiful children come into our lives with HUGE demands and needs and we step up to the task of caring for them extra – every second of every day. It is no small sacrifice. They bring with them so much joy, and so much more sorrow than a mothers heart was made to withstand.
Our thoughts, prayers , and energy is divided among our own children, Phoenix’s family, and the children we have grown to love through support. The community that I turn to is broken and mourning.
As I lay here with Poppy in the wee hours, I am more riddled with anguish than I have ever been. I watch the monitor display her heart-rate and oxygen levels – but it is not enough. I have to feel her breathe. Poppy has been sick for almost an entire month now. The congestion causes serious breathing difficulty. Her heart works harder, her oxygen saturation is lower, her limbs flail and her body is constantly moving to open her airway.
My insides are thinning. The constant waves within crash against my bones. There is an incessant moaning, a hollow wail from my lungs. This is not at all where we were meant to be. Something has gone terribly wrong.
Poppy ✨ 