Parenting a child with a progressive disease is an exercise in constant self calibration.
Typically, adulthood offers few noteworthy forks in the road, mid-life crises, or moments that mark ‘old self’ from ‘new self’. Normalized rites of passage might include divorce, loss of career or the death of a parent. These valleys in the baseline of life call for deep introspection, pause and re-calibration of the stuff that makes us: the who we were before the event and the new self that has emerged. We get maybe 3 or 4 of these self calibrations in our adult life; very few opportunities to awaken and knit together a wiser, more directed person.
The silver lining of loss and grief lays in its ability to spill out the ugly, fake and harmful compounds of identity and replace them with weightier, assured elements. Loss lets the light in and grief keeps it there. Like all great paradoxes, it takes an immense loss to gain a truer understanding of who we are, how we parent, and how we love.
Now imagine that instead of waiting for the big bang of loss and grief, you got to achieve the same self actualization is smaller, more manageable doses of loss.
The greatest privilege in baring witness to your child’s decline lay in these daily self calibrations. On a smaller scale, our family takes a hit, readjusts, grieves and then graduates to the next level of acquired self knowledge. The incremental loss we experience when parenting Red through his rare disease has given us extraordinary insight.
Loss means a part of your narrative has changed, evaporated, fractured, or died. Self calibration means that in the wake of loss, what’s left of you reshuffles and emulsifies the remaining elements into a new being. It’s a fickle skill, finding ways to reshuffle less and less of the person you are and somehow come out whole but it is just that: a skill. There are also sincere benefits to incremental loss:
Incremental loss makes you live from where you are. Our life has been lived in a hospital, in our home, in our bed, laying down and affixed to machines. We’ve been strong, debilitated and pissed off but we lived and loved through it. We live from where we are in the unpredictable wake of pediatric rare disease. Sometimes we’re in rare disease’s shadow and other times, we’re in the clear. Whether in crisis or mundane living, we do our best to continue a family routine and this has been all the difference in preserving our family unit, couple and selves.
Incremental loss makes you live microscopically. We breath 1, 2, 3, 4, 5 through the waves of pain; we measure every ml and calorie; we catalogue memories and examine symptoms; we research medical journals and monitor hearing loss and organ failure. Microscopic living has opened us to seeing the world minutely, specifically and in captured stills of moments and details otherwise lost. Minutia is not trivial, it’s where the soul of your relationships live.
Incremental loss makes you live radically. We tell Red everything. That procedure is going to hurt, this medicine keeps you alive, Mum is sad sometimes, your pain is not fair, your life will be hard. We use medical terminology, talk about children who have died and cry when we’re scared. Parenting radically has eliminated false language and fake reassurances from our family’s repertoire which has built an iron clad circle of trust. Living fundamentally in the open is freeing and authenticating; it helps eliminate the shadows.
Incremental loss makes you gritty. Red was born fighting. His organs and bones are dying. He’s medically fragile, life limited, rare, progressive, complex and so, he was battling before he could walk. Exceptional tenacity was demanded of our family and as a result, we’ve seen our children build a reservoir of rich character traits like resilience, hardiness and perseverance. Perpetual fight mode does something to your DNA and regular bad news does something to your soul. If you’re prepared for loss and hurt then the magnitude of little wins are long felt.
The benefits of incremental loss are difficult to reconcile and of course we would forfeit all stronger versions of our self if it meant Red was cured. In the stark light of day we are grateful for the tenure-tracked wisdom we’ve gotten as parents to a rare child. The gift of incremental loss is regular self calibration. Deep and daily self improvement, reflection and editing as the result of being faced with consistent obstacles has evolved the parents and partners we are. Regular self calibration reminds us of our goals, character traits, and the battles worth fighting in life — it’s like having a Sherpa of life or a tough love Coach always with you.
The incremental losses associated with Red’s disease has allowed us to tune our instrument often and sharply, making our song easier to hear and more beautiful to listen to in an otherwise neglected score and for that, we are grateful.