We are waiting for Red’s disease to get worse. For progression. For decline. We are waiting for dialysis and transplant; for worsening. Years, it will take years of slow decline to get to our worst nightmare. Some say, ‘be grateful’ for the time you have now, when she is stable. Some say ‘focus on the positive’, she’s happy and living ‘normally’. Others say ‘they may find a cure!’ for her incurable rare disease.
I say enough.
Four years post diagnosis and Red is stable. We’re out of major crisis but still in the woods and it is at this point, that my mental rigor is dismantled, my capacity shortened and depression, has taken over. This, is the most socially unacceptable time to experience any signs of mental health disorder: when things are trotting along. Friends don’t register your life as tragic anymore. Family sees you moving through your routine. Work colleagues see lesser absences for hospital stays. By any measure of tragedy, things are okay, well, even … better.
So why has depression perched on my shoulders? Why do I feel paralyzed in bed? Why is getting through my morning routine the equivalent of running a marathon?
I still have not found a way to live in the in between. In between this bout of stability and the next hospitalization. In between this month of normal numbers and the next medical crash. In between this set of milestones and the next round of set backs. In between her turning 4 years old and not knowing when her illness will take over.
So what do parents of critically ill children do in the in between? How do we wait for the disease to grip her tighter and suffocate her childhood? How do we relinquish control and surrender our child to progressive disease?
In the quiet months of Red’s stability, my spirit has completely retreated to the safe and warm corners of my mind. Fully withdrawn and disengaged, it’s easier to live in between. It’s easier to watch the slow decline of my daughter this way and it’s easier to prepare for the inevitable war that is to come after all these long, drawn out battles.
Being on perpetual stand-by is exhausting and mentally draining. In the years since Red’s diagnosis I have seen many selves emerge as her mother. I have been strong, relentless, empowered and I have been completely and utterly slain by her disease.
Parenting in between means you swing your legs over the side of your bed and let your feet touch the ground. You stand yourself up and walk as slowly as you need in order to get your body situated on autopilot. You get through your day. You do it all over again. You push through the depression and exhaustion of the in between.
So hold on, for ever long it takes, hold on. Few will understand the path, fewer will understand the pain. You can do crisis and tragedy and so dear parent of a rare child, you can do torment.
But do it quickly, her war horse is needed.