The North Side of Down, by Nancy and Amanda Bailey

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.

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Dear Mama: The Good and the Bad

Dear Mama,

Yes, LP here.  I think it is really sort of unfair that I’m completely dependent on you to write my letters for me.  I mean, you’re writing a letter to yourself, from me, but you’re not me.  Does that strike you as problematic?  Just sayin’.

The good stuff or the bad stuff first?  Good stuff?  Ok.

I mean, how cute are we??? Nevermind that we ate those crackers on your bed while you were in the bathroom.  Just remember, enjoy the cuteness.

I mean, how cute are we??? Nevermind that we ate those crackers on your bed while you were in the bathroom. Just remember, enjoy the cuteness.

You’re doing alright.  As in, I know that you spend a lot of time worrying about us, and thinking about our futures, but try not to go too far.  Because let’s be real here—we’re not likely to appreciate all the stuff you do for us until maybe twenty years from now.  And that is being optimistic.  You’re in it for the long game, mama.  Before long, my sissies and I will be self-centered, hormonal, young people who are too busy figuring out their own crap to stop and appreciate what went into getting us there.  Plus, some of the crap we’ll be busy trying to figure out will be from you (just being real again).  Seriously, it’ll all work out, promise.

How do I know that we’ll become too busy to notice you?  Because look at Mouse and Chipmunk, they’ve already started!  They’re too busy in their imaginary lands and dealing with their dramas to even notice you lately!  They notice me puuulenty though.  Have you seen how often I have to play the evil pirate, or they end up making me into the pet dog/cat/rabbit?  It’s just not dignified.

Don't make me do this again.  Seriously.

Don’t make me do this again. Seriously.

Another good thing, life seems good right now.  You’re not taking me to any more sleep studies, because my sleep apnea is now mild (I told you so).  The whole homeschooling thing is looking good.  I can tell you and dad are dreaming and talking about the future, and that looks good too.  Mouse and Chipmunk are awesome (let’s just pretend that this is more often than not for the sake of this cute letter).  Me?  I won’t brag here, but let’s just say that I’m on top of things.  That poop?  It gets pooped.  That box of stuff?  It gets emptied.  That silence?  It gets filled with yelling sweet babbles.  All thanks to yours truly.  You’re very welcome, mama, it is really good to know that all my hard work doesn’t go unnoticed!

Ok.  Now.  I’ve got some, um… constructive feedback for you.  This bed/sleep situation.  Come on.  That bed has no boobs, no cuddles, no parents to kick in my sleep, no sleeping noses to pick when I wake up.  WTF, right?  Why would I want to sleep in there?  What’s worse, you put me in those sleep sack thingies, and they get all twisted up while I’m rolling around yelling my head off for you to let me into your bed.  Look.  You and dad are sleeping on that nice memory foam pad, with the down comforter, and all you give me is a sleep sack???  I already gave up most of my nursing at night.  I object.

I know that I slept through the night at two months, blah blah blah.  Let’s remember, though, that my thyroid didn’t work so well back then.  I mean, I’m just trying to recapture the quintessential baby experience.  Yelling, and seeing the horrified look on your tired face as you come and bring me to your soft, warm, wonderful bed.  Listening to you and dad argue in the middle of the night about what to do about me.  Sitting triumphantly on your head with a dirty diaper, each morning I manage to wheedle my way into bed with you.  Are you truly going to deny me this?  What kind of mother are you?

Ok, sorry.  Maybe that went a little too far.  Just ride it out, ok?  I’ll probably get over it.  Like in a couple of years.  Maybe five.  Ten, maaax.

Let’s talk about that therapist.  I know she comes over to watch me do stuff.  I know y’all have discussed me crawling differently.  Something about crawling and brain development.  Check it—there is no way you’re going to get me to do something I don’t want to do!  Just because I have this sweet disposition doesn’t mean that I won’t put my foot down.  And it is down, mama.  I will play with her awesome toys.  I will “talk” to her.  I will even let her hold me, because I happen to like her.  I might even high five her every now and then.  That’s it, though.  I crawl the way I do because it works, dagnabbit.

Last but not least, let’s talk about baths.  I.  Will.  Never.  Like.  Baths.

Nevah evah.

I know you think I’ll get used to them because all my baby friends have.  When I’m a teenager and I’m begging you for some expensive gadget because all my friends have them I’m pretty sure you’ll say something about me not being the same as my friends.  Yup.  Touche.  You’d think that because I was born in the caul, I’d have some kind of affinity for water.  Yeah, I know, that confuses me too.  I have no explanation; I am what I am.

Just a cute picture of me in a box.  Notice, I'm smiling, and I'm not in a bath.

Just a cute picture of me in a box. Notice, I look happy, and I’m not in a bath.

So, mama, that is my letter to you.  A wee snapshot of what life is like in my brain after 14 months of life.  Except it is your brain.  Pretending to be my brain.  You really should think about that stuff I said in the first paragraph.  Mwah.

Love,

LP


Dear Mouse: We Had The Talk

Dear Mouse,

We had the talk.  No, not the race talk.  Not the sex talk.  We had the your-brother-has-Down-syndrome talk. Read the rest of this entry »