On Writing, and… I Got Published.
Posted: September 11, 2013 Filed under: emotional stuff, Wednesday Words | Tags: death, Down syndrome, Sudden Infant Death Syndrome, Writing 12 CommentsI’ve always loved writing. There’s something endlessly fascinating about putting words together. I envision what comes out of my head as visible music, where the words touch, repel, arch, and dance with each other. When I read the words of others, sometimes it feels like taking in a song through my eyes. Words have frequencies and cadence. No person puts them together in the same way and each time, the result is a unique song that to be repeated, shared, and revisited. Good writers weave thick chords of musicality into their words that can be examined and felt over, and over, again.
Writing helps organize my feelings. If one goes to a symphony performance, there is always the tune up in the beginning. A single note rings out, and the entire symphony joins. For a minute, it is cacophony. Discordant noises rub against each other. Sometimes you hear the quick flit of a scale being played. Then, the noise settles down and the story unfolds. Sometimes I’m surprised at what comes out. Sometimes I revisit what I’ve written and realize I’ve already changed my tune.
Me? I feel like I’m more in harmonica territory, rather than full symphony. Still, the act of writing is healing and cathartic for me, so I keep doing it.
Weeks ago, I submitted some of my writing to various places with great trepidation. I worried about rejection, but even more than that, I knew that I wasn’t entirely clear on why I was doing it. Mostly, I thought I wanted to reach out to a bigger audience to talk about Down syndrome. I needed to know if my ideas were shared by more than a few friends. I needed the hope of finding connection with more people who saw parenting a child with Down syndrome similarly as I do. People who would stretch my thinking. I’ve already found many of these people through this blog but I wanted more. It was also an act of spreading my writing wings, as one friend so aptly described it.
Finally, I wanted to know if anything I was writing struck a chord with anyone who didn’t already know me. I’d had plenty of people I didn’t personally know follow this blog, but part of me questioned it. Maybe this is reflects my own lack of self-esteem. Yeah, save it for the therapist, I know. Problem is, therapy is expensive, so here I am instead.
About those submissions. Mamalode took my post about my sister dying of SIDS and is running it today. What I wrote was only tangentially about Down syndrome, which I initially thought was disappointing, but ultimately, it feels good. It felt good to hear that someone else thought what I had to say was valuable. Plus, not everything has to be about Down syndrome. I ponder Down syndrome and disability a lot, but I also realize that it might show a emphasis in my daily thoughts that isn’t there. I realized that this has been an act of spreading my wings, after all.
So… I’d be eternally grateful if you visited my story on Mamalode (click HERE) and if you’re so inclined, please share with anyone who would find it meaningful.
Well, what started out as a short post turned into something completely different. Thanks for reading, world.
Issy Stapleton and the Public Narrative
Posted: September 9, 2013 Filed under: advocacy | Tags: autism, caregiver stress, Izzy Stapleton, Special Needs 9 CommentsIssy Stapleton is still alive. Issy Stapleton is still alive. Issy Stapleton is still alive.
I get the distinct feeling that this point is lost to some. Issy Stapleton is out there, physically recovering from the trauma of almost dying. For those who don’t know, Kelli Stapleton attempted to kill her daughter and herself. Her daughter is autistic. There are many, many theories going around about what happened, why it happened, and how to prevent it. I’m not writing to weigh in on that. Read the rest of this entry »
An Open Letter to Martin O’Malley: #JusticeForEthan
Posted: September 6, 2013 Filed under: advocacy, Down syndrome | Tags: Down syndrome, Ethan Saylor, Martin O'Malley, Maryland, police brutality 3 CommentsDear Governor O’Malley,
Please order an independent investigation into Ethan Saylor’s homicide. Saylor was an American, brother, son, friend, and above all, a human being. His family deserves answers. His community deserves to know that a person with a disability has the same right to life as any other human being.
Your office made a statement that you wish to “focus on forward-looking strategies” to prevent any more deaths such as Saylor’s. Without truth and accountability, there is no path forward. Read the rest of this entry »


