Day #29 heralds a post from Writing Sis. As you can tell, Writing Sis, is an outstanding writer; hence her namesake. Grab a cup of hot tea, put on a cozy blanket and breathe deep.
My family loves to talk. A lot. Conversations between my mom and my
sisters and me, in particular, might start on one topic, wander off into
an “oh-before-I-forget…” anecdote, march further into tangential
territory, circle back to the original topic, dig up a funny memory,
hover around something more serious, segue into a joke, then dissolve
into laughter. “What was I saying again?” and “What was I going to tell
you?” are oft-used phrases, and no wonder. (As someone who feels I write
more clearly than I speak, I confess my conversational style may be the
most labyrinthine of all.) No matter how involved our talks, though,
the underlying objectives are simple: comfort, connection, keeping in
touch. We may live miles apart, but picking up the phone and sharing a
story, seeking advice, or dissecting an episode of Downton Abbey eradicates the distance.
Communicating with Brian has always been different. He has never
been one to share his innermost thoughts or feelings. He will readily
dig up funny memories and segue into jokes (physical comedy being his
preferred humor and putting something on his head—a sock, a place
mat—his favorite gag), and he’ll sometimes hover around more serious
stuff (such as relatives who’ve passed away, paying them tribute in song
or remembrance). But usually he’d rather draw on his Magna Doodle or
rewatch Air Bud: Golden Receiver than have a lengthy talk. I know
some of this is just his personality. There are plenty of people who’d
rather watch an uplifting movie about an athletic dog than sit down for a
heart-to-heart. But some of it’s related to Down syndrome. Brian grew
up with a stutter, needing extra time and effort to express himself
verbally. With speech therapy, it became a little easier. Plus, as Katie
explained in another post, the rest of the fam is well-versed in his catchphrases and Brianisms, so even when his speech is harder to understand, we can usually pick up on the meaning.
Over the past few years, though, Brian seems to have had more
difficultly communicating: talking less, getting more stuck in his head.
He’ll repeat bits of dialogue from movies or fixate on certain words or
phrases but often seems less present in the now. A lot of questions are
met with silence and/or “I don’t know.” I suspect these “I don’t knows”
are a kind of a vocalized pause—a way
to bide some time, in this family of his that talks so much, while he
prepares to say what he’s going to say. If
we’re patient and don’t interrupt him or answer for him, he might follow
up with a concrete answer:
Me: “What did you have for dinner last night, Bri?”
Brian: “I don’t know.”[longer pause]
Brian: “I said I don’t know!!”
Sadly, some of his recent behavior points to early-onset dementia,
which is fairly common in adults with Down syndrome, though it often
doesn’t show up til an older age. As much as I’m aware of this, now that
Brian lives in a group home, and not with our parents, I especially
wish I could pick up the phone and hear exactly how he’s doing and what
he thinks of his roommates and what he has been dreaming about lately
and what show he’s watching on TV Land. My objectives are comfort,
connection, keeping in touch, but the intricacies of his everyday life
remain mysterious. They’re boiled down to ham and potatoes.
What I’ve tried to learn in the last year or so—and am still
learning—is how to meet my brother where he is. To not obsess over where
he has been (expecting him to be the same) or where he might be in
five, ten years (that, too, being a mystery) but to connect with him in
ways that are comfortable to him now. Fortunately, he’s on medication
that seems to be helping: focus-wise, more energy. Still, adaptability
is crucial. On weekends when I’m home in Michigan, we might just sit
next to each other on the couch while he silently draws on his Magna
Doodle and I look through Mom’s back issues of Country Living, and
this is time well spent. I’ll ask him about his group home or
girlfriend but won’t be too insistent about needing to know the
specifics. Sometimes it’s “I don’t know” and sometimes he’ll offer more.
I trust that what we really want to say to each other is best
communicated in hugs, high-fives, the occasional “feet war” (a sibling
tradition), and putting socks on our heads. As Katie mentioned, Brian
has always expressed himself thoughtfully through the music he plays and
greeting cards he picks out. His succinct written notes are also so
expressive. After I gave him his birthday present and around the time my
dog died, I got this one in the mail:
Thank you for the DVD Gnomeo and Juliet. I enjoy it.
Sad about Easy. It was good dog.
I love you.
communication is great—those wonderful maze-like conversations that
only family members and the closest of friends can follow. But there are
so many other ways in which we can know someone and be known. Brian,
the best bro a girl could ask, has helped teach me this.
May I always
Deep Breaths: Tears are flowing as I read this beautifully honest post from Writing Sis.
Listening; let’s land there. What has God been speaking to you lately? Are you listening for Him…do you hear Him speak in chilly wind whispers, in the warmth of a bear hug, in the vibrance of sunrise, in encouraging word, in the pages of Word worn yet new- wrought with truth, for Love. Do you slow down and sit and be still and just listen. Sometime He speaks loudest in silence; in waiting.
Then a great and powerful wind tore the mountains apart and shattered the rocks before the Lord,
but the Lord was not in the wind.
After the wind there was an earthquake, but the Lord was not in the earthquake.
After the earthquake came a fire, but the Lord was not in the fire.
And after the fire came a gentle whisper.