Last October, when I wrote about my struggle to recenter family and fatherhood as my older daughter encountered a newly diagnosed auto-immune disorder (Everybody Hurts: On discovering a child’s illness), many of you wrote in to lend support and solace, and I am grateful for the grace, ever thankful for the voices you bring to this kitchen-table community.
Fast forward one year, though, and the weight has not been lifted so easily. The elderchild still struggles with balance, losing sleep and schooldays to a complex web of pain real and projected. And it’s hard: hard to watch her struggle; hard not to become inured to the stress and strain the constant ache brings to our hearth and home; hard to like her, on the days when she lets the pain get to her better self.
And then there is her sister, who has captured her disease, and our attention.
At nine years old, the wee one is sensitive to others in ways her sister isn’t. And so, where the elderchild complains loudly of her stomach, her little sister is more likely to hide the pain from us so as not to call attention to herself. It took months to diagnose her; it may take years before she is truly comfortable leaving the classroom in pain or need.
Having two sick children is a million miles from having one sick child. Juggling needs is a new stressor, and it is starting to require both parents, keeping us from supporting each other by taking turns.
And two compounds one. They resent the other’s illness, and the attention it brings. Our home is rife and rotten with one-upmanship, jealousy and mistrust growing between the girls, born of pain, and the constant competition to be taken care of. Those last six days in the hospital were an amusement park of chaos, compounded by steroid rage, endless insurance company appeals, the exhaustion of shuttling between two bedsides, and the long agony of waiting for tests and trials.
Driving away from the hospital that evening without them was the hardest thing I have done in a year or more.
Normal isn’t normal anymore.
But there are moments where pride can still be found.
Three weeks ago, on the cusp of diagnosis, the wee one was scheduled for an MRI; I went to work; my wife was planning to take her into Boston after dropping the elderchild off at school. Just before noon, though, things changed, and I got the call: the elderchild was experiencing a sharp and unexplained pain that might be appendicitis; both children needed to go in, but in different directions; we would need both adults there, though both would prefer Mama and could be heard fighting about it in the background, and it would take a good half an hour to arrange sub coverage in my classroom.
The next several hours passed in a whirlwind: the interminably long ninety minute drive, the panicked search for the right room in an unfamiliar wing of a hospital constantly under construction. The pain-hobbled elderchild and I went off to meet with a frazzled specialist already trying to manage tests and find nurses for her sister; my wife stayed with the wee one, who had thrown up every time they tried to get her to drink the fluids for the MRI; one more try, and they were going to put in a feeding tube.
Doctors came in; doctors came out. Mostly, we waited, and wondered what was happening to her sister. And then suddenly, unexpectedly, on our way back from the bathroom, there she was, small and sad beside her mother and the doctor, emerging from a side room, a long yellow tube snaking out of her nose.
Something smashed to pieces in all of us. I could see it in my wife’s eyes, there at the other end of the hall; I could feel it in my heart. But only the elderchild acted, taking her hand out of mine, screaming her sister’s name across the medicine and pain, running to hug and comfort her, crying and broken.
And we pulled them away, because the doctor said “no crying, remember, we talked about this”. And I pulled the elderchild into the same room that they had just left, and her sister and her mother and the Doctor were gone.
And there I was in a tiny room with a broken heart and a child shaking with rage at the injustices of her sister’s treatment, an hour lost to calm words and stories and the slow dampening of the emotional furnace, the Boston skyline the only distraction, our voices our only distractor.
So often at home we see only the worst of them: the jostling for space, the frustration of pain. That Friday she was angry, but it was born of love, fierce and unexpected after a year of push and pull, of distance and shadows. Last week they were cellmates; now they are home, though with a calendar full of medical appointments, too-often shortened days at school, and with all other things tentative, ready to be dropped at a moment’s notice if the pain gets too great.
But last night we went out without them, and it felt safe to leave them home, playing with their new sewing kit quietly on the kitchen table. Today they are at the mall with their mother, chattering excitedly about their Halloween plans while they help each other try on thrift shop costumes. And every once in a while, for no reason at all, the elderchild hugs her sister tight, embarrassing her, and in their interplay I see the crushing love I feel for them as if my children had become a mirror for my most secret and unexplainable self.
How heartbreaking to see such stubborn, violent love emerge in the strangest of places. How powerful to see them learn the things we thought we needed to give.
How fiercely we protect each other. How it hurts to love you so.
Oh, my brave, proud children, may you, too, learn to channel your anger into love.
SONGS FOR OUR CHILDREN: A COVERFOLK MIX [zip!]