Last night while I stood in the laundry room folding a load of clothes that had been de-wrinkled at least three times, I heard Ike go down to the basement where Mark was hanging out to give him his nightly Valium. I didn’t hear the usual clicking from the hand counter and constant music from his iPad. My folding slowed and as I tightly gripped a pair of pajama bottoms, I held my breath and waited for it.
For the moment that Ike will yell up and tell me to call 9-1-1. The moment when he finds our beautiful, precious, and medically complicated boy in serious peril. I imagine this moment in my head in vivid detail. I ask myself what I would do. How fast would I move? Who would I call after 9-1-1? Would they let both of us go in the ambulance? This mental dress rehearsal happens at least once daily.
If I find the door to the garage open, and can’t hear the sounds from Mark’s iPad, I assume he’s a mile away in the freezing cold, barefoot. I practice the 9-1-1 call, I hear myself telling the 9-1-1 operator that he wears a project lifesaver device so they can more quickly locate him.
Again, I immediately start thinking about the worst possible outcome as I go frantically running toward garage. When I find him quietly perched in the stairwell to the attic scrolling through his music, I half exhale but my adrenaline is pumping, and the feelings of the rehearsal remain.
If I hear Mark coughing, immediately I think that I will need to dislodge a foreign body. I can see still hear the sounds of the back blows Ike gave him the last time he choked. We often say “he survived another sandwich!” because he’s incapable of understanding how much he’s placed in his mouth. A small detail that could have disastrous consequences.
Mark sleeps in and we wonder if we’ll go in and find him dead. I imagine his lifeless body burrowed under his covers, mimicking peaceful, deep sleep. I can see it so clearly.
A thud comes from a floor below and I begin mentally preparing myself for the subsequent trip for X-rays, and then the confirmation that it’s broken. Whatever it is, it doesn’t matter because it’s likely broken, which will mean difficult appointments, the ever increasing challenge of holding down a screaming child, follow-ups we have no capacity for and procedures we can’t explain. And we will just need to endure it because there’s no other choice.
The thing is, Ike has never told me to call 9-1-1. We’ve never had an emergency that would require an ambulance, but we’ve had so many close calls and enough scary moments where things could have ended so differently.
Knowing this has caused me to live on the edge of fight or flight. It seeps into how I respond to and view my other children’s mishaps. Luke fell and split his lip this week, and as I cradled his face, frantically examining his mouth for the source of the bleeding I imagined the long night before us in the ER. I worried about Covid exposure, and what it would mean for Mark. Several minutes later we determined it was not that serious, he went to bed and he was fine.
There are significantly more “fine” moments, but still, anxiety lurks.
One of the most unexpected parts of special needs parenting has been the mental doomsday prepping I do. I anticipate catastrophe. I assume the worst. And I never find comfort in odds, because we’ve continually lost that game. Each time we’re presented with the percentage of likelihood of something occurring, no matter how slim, it occurs.
So when I received a message from the bone clinic this week that Mark did indeed have compression fractures in his thorax and he will require hospital based infusions, I thought to myself “of course he does, why wouldn’t he?”
I no longer ask myself if, I wonder when. I no longer assume everything is fine, I presume it isn’t. You see, continually living in the land of possible bad news adds to the numbness that allows me to live my life without hysterics. If I’m waiting and ready, then it can’t sneak up and surprise me. Though regularly traumatized, I can remain my normal, stoic self in the face of constant worry.
Last night wasn’t the night. Just like Luke, Mark was fine. Ike gave him his medicine, he went to bed, the sun came up and I began a new day, but I know the next dress rehearsal is right around the corner.