posted May 18, 2009 at 1:25pm
As I might have mentioned earlier, I am not a big fan of National (fill in the blank) Day/Month/Year/Moment.
This might be because as a journalist (particularly one who edits a food blog) I find myself bombarded constantly with PR requests to cover National Margarita Day by writing about a client’s tequila or to celebrate Breast Cancer Awareness Month by publishing photos of a company’s pink-ribboned cupcakes. It’s fake, created, ridiculous and often done for the wrong reasons.
That said, I get that it’s good to remind people. (Not about tequila, I don’t seem to forget about that.) As I’m fond of saying, in my house every day is Down syndrome awareness day. Perhaps not in yours. And so I’m not going to bag on the “31 for 21″ campaign, which encourages Down syndrome bloggers to write every day in October, which does in fact happen to be Down syndrome Awareness Month.
I’m also not going to promise to blog 31 days in a row this month. But I’ll do one better: I’ll introduce you to five of my favorite bloggers, all of whom happen to write about Down syndrome on a regular basis. I have to admit that since starting Girl in a Party Hat more than five years ago, I’ve fallen behind in my writing but even more in my reading — I don’t keep up with other blogs the way I once did. (No one has enough time for everything these days, do we?) But here are five you should know about, for when you have a few free moments. Some of these bloggers are doing “31 for 21,” others aren’t. They are all beautiful writers who have taught me a lot. Enjoy.
Everything Happens for a Reason by Maya Kukes
To say Maya is a kindred spirit doesn’t begin to describe it. From taste in graduate schools to taste in crappy movies, we have a lot more in common than the fact that our kids have Down syndrome. Finding Maya was a huge relief — and a joy — in a lot of ways.
When the house lights went down, Leo took my arm for a minute, not sure what to expect, I suppose. When the show started, and the actors began speaking (and there were puppets!), Leo crossed his legs, leaned forward, and was instantly hooked.
Aside from laughing and clapping at all the right places, the only sound Leo made was when the first web with the words “Some Pig” appeared. “Some pig!” he announced, decidedly not whispering. He leaned over to the unsuspecting man next to him, pointed at the web and said “Some pig!” The patient man (a dad) caught my eye and smiled at me, and then Leo. I drew the line when Leo crouched down and attempted to tap on the shoulder of the woman in front of us (he apparently wanted to tell her about “Some Pig!” too.
Unlike “Some Pig,” Leo couldn’t read “Radiant” or “Humble,” the next words to appear on Charlotte’s Web. I assure you that when he leaned over to ask me “What’s that say?” he immediately attempted to tell Dad Next To Us about Radiant and Humble. Luckily, patience mostly abounded that day and Leo’s neighbor indulged him with a sweet nod. Read more.
My Name is Sarah by Sarah (and Joyce) Ely
This is a very special blog, written by Sarah, who is a young woman with Down syndrome. Her blog has given me a window into what Sophie’s life can be like; it’s an incredible gift.
This is Joyce. [Sarah's mom] We frequently get questions wondering how Sarah blogs. So we decided to show you. Although internet blogging has only been around for a few years, Sarah and I have really been engaging in the same process since 1995 or so. It was just more primitive, ie: photos, paper, three ring binders… Read more.
Ordinary Afters…. by Nicole Hines Starkey
I follow Nicole and her husband on Facebook and she and I are both big Instagrammers, so some days I feel like I know her family better than those I’ve actually met. Her writing is lovely.
She turns and runs to the pantry grabbing one of the set of pint-sized aprons we keep on hand for cooking. She hands it back up to me and turns her back waiting, knowing that I will tie it in a gentle bow and acquiesce to her request. I lean down and kiss her strawberry locks and hand over the rainbow whisk that she loves to “cook” with. There may not be time to make actual muffins. But certainly there is time for the even better make-believe ones. Because I can see it. I can see her mind and many of its facets so much more clearly now than I could a few short years ago. I can see when she is pretending and when she is serious. When she is ready to learn and when she is ready to teach. When she is ready to work and when she is ready to play. Read more.
*Results Not Typical by Chrystal Smith
Rum cake is her kryptonite — but otherwise I don’t think there’s anything that can stop this woman.
They came into my room when she was twelve hours old, before I could even see the symptoms on my own, before I had the opportunity to get to know her, before I had the chance to build up my defenses.
They looked at her and told me what they suspected. They wanted to take her blood. They needed proof of what they already knew and what it would take me quite some time to accept.
I consented, if only to show them how wrong they truly were. They may have been smart, but I had it on good authority that I had done everything right. I knew that my times of struggle were over. I knew that it was my turn to be happy. I knew this couldn’t be my destiny. Read more.
Unringing the Bell by Tricia Theis Rogalski
Ah, Tricia. Another friend I’ve never met, but I know her comings and goings — in a good way.
Georgia…well…Georgia insists. She goes through phases, wears things OUT with the phases, learns songs inside and out, tv dialogue inside and out, entire dance sequences INSIDE AND OUT, and then, finds a new obsession. Then, after a few weeks or months, when you happen to put one of the old obsessions in the player, she is typically delighted. So delighted she falls in love all over again. Annnnnd repeat. (Although, eventually, much to our delight, some things just fall our of rotation entirely. For instance, she doesn’t tolerate much Sesame Street anymore.)
She’s very…let’s say routine-based…in life in general. She used to yell out whenever we went a different route home and get very upset. If I ever have to make a pit stop and she thinks we’re going home I sure as shootin’ better announce it…preferably a number of times from the moment we get in the car. “Georgia, first we’re going to the grocery store, THEN, we’re going home.”
First, Then, First, Then, First, Then. Story of my life. Read more.
Mine, too, Tricia. Mine, too.