On Caregiver PTSD

mother statue

Traffic was at a near standstill.  I was acutely aware of the firetrucks and ambulances piling on the highway for the accident on the opposite side.  My chest filled with a small warm feeling I have come to know as the start of the adrenergic response.  I was safe and I assumed everyone else I loved was as well, yet my mind no longer knows the boundary.  All it takes is the errant whistle of siren on the wind for my body to react, for my mind to shuffle through all the previous emergencies, and all the potential possibilities.  It’s become faster as the years pass and the collection of emergencies compound.

And then, it came.

My phone rang, it was my husband.  The school had called, she was seizing again, they called 911, an ambulance was on the way.  My baby girl, alone, with no way of either my husband or myself to get to her.  The small warm feeling in my chest exploded into an all out inferno and I rerouted to the hospital.  I was nearly blinded by the flashbacks of each and every emergent seizure.

This is the reality of parental caregiver post-traumatic stress disorder (PTSD).

I arrived at the hospital before she did and once she got there I didn’t need them to tell me where she was; the trauma room is an all too familiar nemesis.  Everything else disappeared and my vision tunneled on her.  She was barely breathing but no longer seizing.  All emotion was cast aside and logic ruled as I ran down all her medications, the order of medication administration for similar seizures, her seizure signs, and general medical history.

Quickly she began breathing again on her own and waking from the medication induced stupor.  She survived once again–beautifully resilient.

We survived once again.

As the adrenaline started to fade in rushed the blowback from PTSD.  My brain attacked me. I knew looked like a detached mother–hyperlogical and unaffected by the life threatening situation in which I found my daughter.  I’m well acquainted with the sanctimonious online mommies who judge the videos of tragedy and remark how they could never be that composed.  Yet, tragedy and lifethreatening are our regular.

Was I detached?

This is the reality of PTSD.  It warps the brain.  Over the next 48 hours I examined every possible thing I did or didn’t do in my recent and not so recent history that “caused” the latest life threatening event.  My brain tried to create control from a situation over which there was and never will be any.

I wasn’t detached I was dissociated–separated from the emotion–until it was safe to feel them once again.  I didn’t cry until 72 hours out–until I was really sure she survived and I could face the reality of the terror once again.  It was then it came in heaving, racking sobs that I stifled in my pillow as to not wake the house.

And today?  Today I got up and washed my damned face.  I drove her two hours to her neurologist as I was pulsed with a tiny infusion of adrenergic warmth every time she coughed from her car seat.

I did as I have done for her whole life and as I will for the remainder of our lives together.  The spectre of trauma always looming.

 

On Fighting for One’s Life

hospital

There are no words for watching your child fight for her life.  Instead, there are beeps and humming and the mechanical sounds of that which is not human but used to sustain the very human who is most precious to you in this world.

The human body is both terrifying and remarkable.  The fragility of life lay juxtaposed with its resilience. In both manner it is breathtaking.  It is a blessing and a curse to bear witness to the raw power.

It was Wednesday.  Winter pressed heavy on our household.  The spectre of illness swirled ’round.  News flashed with reports of norovirus, flu, and measles–all background noise.  Stacks of papers filled my office–IEPs for my children and other children who needed help, insurance forms, financial planning, medical documents, and the veritable detritus of parenting a child with a rare disease.  I was hunkered in for a day of paperwork.

It did not surprise me when I received a call from the nurse who reported my daughter was looking tired and complaining of a headache and stomache.  I picked her up from school and, as expected, she spiked a fever.  She was chatty and pleasant; she had an appetite; she even annoyed the heck out of me.  I prepared for the typical childhood virus with a little added flair due to her underlying medical conditions.  I certainly was not prepared for what was to come.

Three days later she was in the PICU fighting for her life.

There was nothing I could’ve done differently to prevent it. (That didn’t stop me from blaming myself)  Nothing can prepare one for the sudden silence.  It is deafening.  She was quiet and my mind was screaming loud.  What if I had brought her in to the ER earlier?  But, I had brought her to the pediatrician and he said she was ok.  What if I had held one medication?  But, that wouldn’t have mattered.  What if?  What if?  What if I could’ve done something different to protect her?  What if I caused her Tuberous Sclerosis Complex (TSC)?  Perhaps some inherent flaw in me, my character, my body, my soul caused her TSC, the tiny mutation on her 16th chromosome, which caused benign tumors to grow throughout her vital organs and wreaked havoc on her bodily systems.

Yes, yes it had to have been me.

In all the silence of her sickly slumber the deduction was that the fault and control lay with me; because, the truth was too terrifying.  The truth was like the erratic beeps and buzzers erupting from the machines crowded around to monitor the goings on inside my baby–that there was no predicting or control.  There was only vigilance.

Her body was and is remarkable and terrifying; and, I had and never will have any control over that.  I could and can only love her and be vigilant.

When her silence turned into screams I held the sacred space that is a mother’s love.  I couldn’t fulfill the motherly task of “making it all better” for her and I won’t ever be able, but I could and can hold the loving space for her resilience to bloom.  I stood firm and reminded her who she was as her body tried to steal that from her. I held the ghosts of every PICU and hospital stay past at bay for her (and me) to make space for whatever was to come.  I hummed softly in her ear the tune I have sung to her since I rocked her in the NICU as a preemie and she settled.  And her body began to heal.

We have been fortunate to celebrate her resilience and full recovery!  Yet the shadow of life’s fragility haunts.  The memory of the fight follows like a faint monitor beeping drumbeat; a ghostly shadow that lay just behind the veil of the exuberance of life; or deja vu that steals one’s breath midsentence.  Life is both wonderful and terrifying if only for one word–love.

There are no words for watching your child fight for her life.  There is only raw emotion; primal fear; all-consuming love; and breathtaking awe.