“Our life was just focused in so many ways around her health, and around her surgeries and her needs and ultimately, the transplant. And when she passed away in the summer, it was almost like I awoke one day and thought, my gosh, I have a son who is 18 years old, and I’ve almost missed his life”
Rebecca Scarpati, on her son Rafe and now-deceased daughter Cyan (Green, 2010 as cited in Vanderwerp, 2012).
This quote got me hard.
I try my very best to pay close attention to G as she grows and oversees Red’s at-home and in-hospital medical regiments — but I sense that I am failing her, namely, in the way Rebecca describes above: getting swept away in the hurricane of rare disease to be confronted by another child, whose life I am missing.
There is an impossibility in simultaneously tending to a child with extreme needs and tending to the common needs of a healthy child — the impossibility is doing both well, and with focus.
I haven’t figured out the balance just yet.
And so when Red is in hospital, I am by her side, getting her through and feeling a heavy weight leaving G behind; and when I am with G focusing on the simpletons of a 3-year old’s world, I feel I have abandoned my sick child.
It’s simply impossible to do both well.
So it is always with a heavy heart that I sink my teeth into whichever parenting peril I find myself presented with. I do my best to focus, to be fully present for that one child. I touch them as often as I can. I make sure I find their sight-line and tell them all the different ways I’ve fallen in love with them. That’s all I can do; to parent always with a torn heart, one child at a time.
I take Rebecca’s lesson seriously.
And because of parents like her, my own parenting continues to evolve and get better as I absorb these heartbreaking stories: leave no child behind, even and especially in the face of trauma and crises.
Never have the most ordinary parental tasks become so powerful, so important: to read bedtime stories; to attend school Dance-A-Thon’s; to eat dinner together. It’s the being fully present that tells her she is just as important as Red, her needs are just as great. There is no hierarchy of the needs of one child trumping the needs of the other. I thought there was. I was terribly wrong.
Growing up in a sick or disabled sibling’s shadow may leave kids feeling neglected at times. But experts say learning at an early age to put another persons needs first often leaves these siblings better adjusted in the long run.
One particularly horrible morning, between commutes to the hospital, with one parent on the day shift and the other on the night shift, I groggily dragged myself through G’s morning routine before school.
She looked at me and said “It’s OK Mummy, there are balloons in the hospital, I love balloons.”
I’ll never forget it.
She knew I’d be leaving her to go to the hospital. She knew it was hard. She was trying to cheer me up and she was letting me know she was OK too because she loved balloons.
That’s when a little bit of hope crept in and I took lead from my 3 year old daughter, who chose to focus on the simple pleasure and wonder of balloons despite the rest of it, despite all of it.
You bet your ass I brought her home the oddest arrangement of balloons one can buy …. in a hospital. And suddenly, we were all connected: balloons in Red’s hospital room and balloons in G’s bedroom.
Then it felt a little more possible.