The Part of Rare Disease No One Talks About


Rare disease is a psychopath.

It devastated our relationship/marriage with such ease, such grace and seemed to smile at us each time we tried to dust ourselves off from sequential emotional blows. It gave us no time to rebound, no time to gain composure.

Creatively, it would find new ways to latch to our heels, to wrap its hands around our throats, to stop us dead. Rare Disease was the Other Woman, the Perpetually Brewing Storm Cloud, the Inevitable Car Wreck that mangled us beyond recognition to each other.

Who have we become? Certainly not the parents we were before. What are we now?

The months after the diagnosis completely broke us. The love had grown hard, and the only reason we stayed intact was because there was no escape, no way to leave. Rare diseases’ prisoners. How does one sell a house and create two separate households while parenting two small kids, one who is medically dependent on technology to live and who often presides in a hospital room? How does marriage break apart in crises?

It doesn’t; it can’t. There’s no time for such self-indulgences.

No one talks about this part. The freakishly high statistics of parents divorcing or separating after childhood diagnoses. No one talks about the crash and burn. The burn out. The hate that overtakes the love and the anger that overtakes kindness.

Instead we say things like, “You guys are so strong,” “You’ve made it this far…” and “This will only make you stronger as a couple.”

No. It broke us.

Not in the major fracture sort of way — in the multitude of hairline fractures all over your body sort of way. Walking fractures that let you go on, causing more pain and damage as you go. Invisible broken.

And then finally, light and breath seeped inward. Then love stood tall and said no more. I looked at him with sober eyes as he fathered our girls so beautifully, as he always did. In him, I saw the only soul who had endured what I had endured, who combats chronic sorrow in the way I do — and for the first time in a long while, I touched his shoulder with less prickle and more kindness.

“I’m not the enemy,” he said. “That is.” He pointed to the Psychopath encasing our daughter in her hospital bed.

Then suddenly, Rare Disease wielded less power and its grip loosened enough for us to take each other by the hand so that today, we could do it together. Face it together. Live it together.

young girl smiling at camera

I’m reminded of this quote:

It is a curious thing in human experience, but to live through a period of stress and sorrow with another person, creates a bond which nothing seems able to break. — Eleanor Roosevelt

In many respects, the Psychopath that broke us forced us to rebuild. Start anew. Work with our broken selves to safeguard our children. And so I was met with a new partner, a new husband and new co-parent who I’d never seen before. We began courting again. As entirely new people, parents, partners.

This diagnosis catapulted us into the realm of extraordinary parenthood, for better or worse but together nonetheless.

On good days, we cherish it all. We live simply and are grateful for the time together outside hospital walls. On bad days, it hurts enough that we don’t have to be unkind or combative. We simply pick each other up and get to it.

two young girls holding hands, one of whom has scars on her stomach

This post originally appeared on My Rare Child.


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