Death came twice this week.
One after living many years; one after living only a few. One is carried in my children’s blood; one I’ve never met face to face. One taught me about what has been; one taught me about what could be.
A caterpillar constructs its own coffin, dissolves itself, then rises again.
I try to accept that what life shows me, I may only witness, not have.
But I have so many wants.
I wanted a great grandmother to always laugh and tell her stories.
I wanted a beloved friend to have more days with her miraculous creation.
I wanted no pain.
I may want, forever.
But that is my lament, and shows how grief makes me selfish, even as I cry for another.
Death is difficult to witness. We try to ease the struggle but cannot do the work; our people go without us for the final act, so that they may emerge into what we cannot fathom.
I have witnessed great beings, old and young. I am grateful.
Say not in grief that she is no more
but say in thankfulness that she was
A death is not the extinguishing of a light,
but the putting out of the lamp
because the dawn has come.
I spend a lot of time thinking about my children. I know, you are shocked. One of my kids has Down syndrome. Ergo, I also spend a lot of time thinking about disability. Yes, another shocker.
I think every parent spends quite a bit of time trying to divine his or her child’s future. Maybe others are better at realizing it is a futile exercise, but I can’t seem to help but fall down the rabbit hole every now and then. For me it is part of the loving; I want to know that if my babies are to walk through the harsh fires of life that they will have just as many moments of rising above. As long as we can withstand it, hardship tempers and shapes us into stronger, more resilient people. Yet, as a parent, I wish someone could whisper in my ear, they’ll be alright in the end. Just that little bit would make me sleep better.
This on and off again attempt at seeing the future takes on a different shape when I think of my son with Down syndrome as compared to his siblings. It isn’t even so much about him. I believe he holds difference just as we all do, but he’s not Different, you see? It is just that I know he will likely face more discrimination than his sisters will. I’m surprised at how routinely he is questioned in ways that his siblings are not, even at this young age. Will he ever talk? Can he go to school? What can he do? What does he understand? His whole life seems to be prefaced with an “if”. It is as if someone put a big “MAYBE” bubble over his head. Frankly, I’d like to pop that bubble and stuff it down the disposal.
With the passage of the ABLE Act last month, I’d been contemplating my children’s futures quite a bit more than usual, wondering what things I needed to do in order to ensure the most possible level of self-determination for my child with a disability. So perhaps it was kismet that the book The North Side of Down: A True Story of Two Sisters came to me just then.
The North Side of Down is a beautiful, bittersweet, story about how disability weaves its way through a family’s fragile, and ultimately breakable, bonds. At forty years old, Amanda is the youngest of eight. Each chapter begins with Amanda’s words, setting the scene for her older sister Nancy to weave the tale of their family’s slow, dysfunctional collapse after their mother dies and their father becomes unexpectedly ill. I appreciated this format, as it felt that Amanda’s words led and Nancy was amplifying what was already there. Both sisters have a brand of dry, unexpected humor that makes me wish I could meet them both.
Nancy writes herself and her oldest sister Raven as two diametrically opposed embodiments of how disability is viewed by society. Nancy, whether she intends to or not, holds a very radical view of disability. She advocates for Amanda’s self-determination, and herself practices unconditional acceptance of Amanda’s identity. I’ve become nearly allergic to any whiff of pity, burden, or inadequacy in relation to the topic of disability in literature. As a non-disabled parent who writes about her disabled son, I’m very aware of what a difficult task it is to keep honesty and nuance when discussing such a wide a varied topic such as disability. I made my way through the first few chapters with a bit of anxiety, waiting for disappointment, but never found it. Nancy writes about her sister with respect and reverence for Amanda’s entire person, including but not limited to Amanda’s disability.
In contrast, Raven is portrayed as seeing Amanda as a series of deficits that can only be managed and remediated by a non-disabled person. Frankly, Raven as she is written would be my worst nightmare; I had a hard time understanding how such different women could share the same sister. As their parents decline, the two older sisters begin to be at odds over Amanda. None of the other siblings seems able to let go of his or her respective bit of emotional family baggage enough to intervene, allowing the family to fall ever deeper into their painful and destructive fight over Amanda’s future.
I found the book resonated personally with me at every turn. I constantly found myself wondering, could this happen to my family? Despite the love and care I see between them now, as children, could my girls possibly grow into views so disparate that they could eventually let their brother suffer for it? I know that until I read the book, my main concerns were of the outside world, strangers who may not respect or understand my son, but now I realize that I may be missing something crucial that is right under my nose.
I wondered, how much their parents ever discussed disability around the dinner table. Or, if anyone had ever even thought of disability as a civil rights issue. I wondered how often they had sat down as a family and openly discussed their feelings, allowed Amanda to speak and be heard before their parents started their unexpected declines. It seemed like Amanda was left instead to drift on the unpredictable tides of her siblings’ longstanding resentments towards each other.
After I’d finished and felt a sort of terrible ache, because I know too well that this kind of story unfolds over and over again in families across the country. The North Side of Down is a beautifully rendered portrait of the power and frailty of family bonds, but I think holds special interest for families touched by disability.
You can find the North Side of Down: A True Story of Two Sisters for purchase on Amazon.