When Depression Hits in the 'in Between' of Your Child's Critical Illness

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 my daughter’s incurable rare disease.

At this moment, I feel like saying, “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 has shortened and depression has taken over. It seems to me 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 OK, well, even … better.

So why has depression perched on my shoulders?

Why do I feel frozen as I lay in bed?

Why does getting through my morning routine feel like 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 attempt to suffocate her childhood? How will 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 Fully withdrawn and disengaged, it feels easier to live in between. It can make things easier while I have to stand by and watch my daughter’s condition slowly decline, and it feels easier to prepare for the inevitable war that is to come after all these long, drawn out battles.

Being on perpetual stand-by can be 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 torn and devastated 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 however long it takes, hold on. Few will understand the path, and fewer will understand the pain. You can handle crisis and tragedy, and so dear parent of a rare child, you can handle the dark times of parenting “in between.”

But do it quickly, her war horse is needed.

Follow this journey on My Rare Child

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