birth story, big brother's version

Still in the process of unpacking some of the detritus left in the wake of the move. I came across this draft in Bobby's inimitable handwriting--which in another century might have been called "crabbed." It's undated but I suspect it's from last fall, when his teacher had them work on a "personal narrative."

When my mom told me that she was going to have a baby I was so exited. I hoped that I had a Brother Because we could play legos together. Every day I would ask Mom if the baby was here but she would always answer no. A couple of months later my mom told me that I was going to have a sister. It was ok but I still would love to have a brother.

The 7 to 9 months past really quikly and before you knew it I was a home waiting for Mom to come back from the hospital. I was watching TV eating crackers. Then the phone rang. Dad said we had to drive to the hospital right away. Dad told me that the baby was here and we drove to the hospital in about 100 minhits. When we got there dad went to a room while I waited on a bench. A couple minuits later Dad came out. He said that my sister was going to stay in the hospital for a couple of weeks.

A couple of weeks later dad said that my sister needed surgery because there was a problem with her heart. When she came home I was so happy even if she was a little different. She had somthing called down syndrome that is a problem with her brain. She can still walk and talk but sometimes she just acts weird but to me she's just the same as all of us and she's my sister.

This is, of course, a work of fiction, with the concomitant inaccuracies and reworkings of time. Bobby was all of 22 months when Stella was born nearly 8 years ago. Yet somehow he chose to write about this event that he couldn't possibly remember in any sort of chronology or detail. I do recall his coming to the hospital, but he wasn't left sitting on a bench unattended. He was in a small "family room" watching a Schoolhouse Rock video, his latest obsession, while parents and grandparents took turns donning the pale yellow gowns and scrubbing up with acrid-smelling soap to enter the NICU.

Now that I'm starting a new season of Creative Nonfiction, my students and I are once again talking about the unreliability of memory, about truth vs. fact, about our version vs. someone else's. Somehow, I think, despite getting the "facts" mixed up, my son has captured a certain truth about his sister's birth and its impact on his life.

back to the BAP blog

I'm an occasional (very occasional) guest blogger again this week on the Best American Poetry Blog. I finally was able to put together some of my thoughts and feelings about the use of the "R" word. I won't post again about it here...please go, Dear Indulgent Reader, to this link to read more.

100 days of audacity

Arielle Greenberg and Rachel Zucker, who have collaborated on so many wonderful projects, created this blog, which posts a new poem, by a different poet, each of the first 100 days of Obama's administration.

I'm honored to be the poet for Day #61--a special request on my part, because today is World Down Syndrome Day (3/21 = Trisomy 21, get it?).

Avery's surgery a success!

Sounds like all is well with this little one in Seattle...

I remember how amazingly quickly Stella recovered from her surgery, at nine months, to repair a ventricular septal defect (VSD). I think is took her parents awhile longer.

prayers for Avery

It had been awhile since I had caught up with Jennifer and her family. So, embarrassingly enough, it wasn't until Vicki told me that I knew Jennifer's son Avery was scheduled for surgery to repair a heart defect that had worsened in the five years since his birth.

Today is the day; they traveled to Seattle Children's Hospital for he procedure (read more here, in Jennifer's beautiful prose).

I know all too well the sense of helplessness when you give up your child and put her in the hands of others, and the tremendous fear, no matter how accomplished and celebrated those others are. I know many prayers and good thoughts are being sent their way, and many of us are waiting to hear how Avery is doing.

down syndrome awareness month

Hard to believe that it's been a year since I took up Tricia's "31 for 21 Challenge" and posted almost every day during October, Down Syndrome Awareness Month. I've been too busy and distracted to post about it yet this year, but it has definitely been on my mind, especially as the election frenzy escalates.

Readers who know me will find it as no surprise that I am not a fan of Sarah Palin. I think McCain's choosing her was a cheap shot; I agree with those of you who think she is unqualified and find the prospect of having her as second in command downright frightening. I have strong objections to her political and ideological views, to put it mildly. I hope Barack and Joe kick their behinds all the way to the Arctic Circle.

But I have to admit that I am not ungrateful for the positive attention that her son Trig has brought to the Down syndrome community (I won't go into the negative attention, often in the name of "political humor," rife with uses of the "R word" and other slurs). The fact that someone so in the public eye is the parent of a child with Down syndrome can only shed light on the condition and the many individuals who have it.

Let's just hope some of that positive focus lingers, even when Trig's mom and her running mate, um, well....we shall see in just a few weeks, shan't we?

Oh, and as a special treat, here's a pic from Stella's day out in the city--including a Dan Zanes and Friends concert--last spring with her new friend, Emma Sage, and blogger mama pal, Tara (photographer extraordinaire).

we love dan zanes and friends!!!

Stella and I had a very special outing on Saturday--Emma Sage and her mom, Tara, invited us to help celebrate Emma's 7th birthday with a trip to see Dan Zanes and friends at the Highline Ballroom. Well, for various reasons I didn't try to get tickets until the week before, and it was too late: sold out.

But all was not lost. Tara emailed Dan through his website about Stella and Emma, and someone from his record company called her and said they would leave two tickets under my name! Lo and behold, Stella and I were on the guest list! It reminded me of my Boston days, going to rock shows (including Dan's band the Del Fuegos).

Stella and I also said hello to Saskia Lane, who plays bass for Dan's band, and who is in a great gal group called The Lascivious Biddies with our friend Deidre Rodman.

We had a great time--the girls became instant friends and danced a lot to the awesome sounds of the myriad musicians Dan has gathered around him. I especially enjoyed the performance of La Bruja, whom I'd just seen a few weeks ago at the Nuyorican Poets Cafe celebration at Town Hall. Afterwards, we had a wonderful outing along the Hudson River waterfront.

Thank you Tara and Emma! Thank you, Dan and Friends! See you soon!

blushing and crunching

It's still very much crunch time, but I wanted to give a shout-out for the latest book by the fabulous Molly Peacock, The Second Blush. I'm going to hear Molly read from the book tonight at the Ceres Gallery in Chelsea (aka the Work 'Hood). Can't wait to get my hands on a copy!

And an update: strings were pulled, and we got Dan Zanes tickets! I'm ecstatic. More later. Thank you, Tara!

I fly those flights of a fluid and swallowing soul... my course runs below the soundings of plummet...
I am an acme of things accomplished... and I am an encloser of things to be...

life as they know it

Well, it certainly has been an exciting weekend for us! Today Bobby, Stella, and I visited the home of three of my personal heroes: Michael Berube, Janet Lyon, and their amazing son, Jamie. Michael's book, Life As We Know It: A Father, A Family, and an Exceptional Child was one of the first things I read after Stella was born. I found it comforting and helpful on so many levels to read of their experience as intellectuals and academics whose second son was born with Down syndrome.

I'd been hoping to meet them ever since I realized they had moved to the town where my brother David lives. This weekend it finally worked out, and our Stella Bella had a grand time exploring their lovely home, with Jamie as tourguide. Michael and Janet generously shared experiences, advice, and coffee with me--and Jamie generously shared a stuffed doggie with Stella! He also performed feats of memory and, in the photo above, attempted to balance a plate of pepperjack cheese on his father's head. Truly a wonderful visit with an inspiring family.

happy world down syndrome day!

March 21 has been designated World Down Syndrome Day (get it? trisomy 21, 3/21?). This website has more information about commemorations 'round the world.

Now I need to go keep Princess Stella from getting black bean quesadilla on her Cinderella dress!

signing time for Stella?

I've heard such great things about the Signing Time DVD series that I'm thinking about getting some of them for Stella. We have never pursued signing with her, but I'm thinking it might be helpful. She certainly was enthralled by Rachel at the Buddy Walk!

So, readers, please give me your sense of whether it's a good idea to get her started now. She's six, she approximates a lot of language and speaks in sentences, but sometimes it's hard to understand her (and it's hard for her to communicate). Is it too late? Is it worth a try? If so, which disc should we start with? Any suggestions welcome!

31 for 21: Getting It Down so far

The 31 for 21 blogfest has been an amazing experience for me, both as a reader and as a writer. I've been introduced to blogs I hadn't checked out before, and I've gotten new readers, too.

Most of all, it's gotten me writing. If I keep it up until the 31st, I will have posted more entries this month than I did the entire year in 2006.

Thanks again to Tricia for getting us started getting it down!

glimpses of love in fighting the inexorable deterioration of the will...

OK, I'll admit it. Since taking the 31 for 21 challenge I have begun to find myself procrastinating when it comes to blogging, in the same way I usually put off other "have-to" things. Quite often I would just much rather read other people's blogs, or play online solitaire, or eat chocolate.

Part of it is I am also working on the memoir, bit by bit, longhand, in notebooks, at my writing space whenever I can make it. This is deep work, and it is slow going for them most part. And it often siphons off the language I have to give. I recall years ago a good poet friend of mine apologizing for not keeping up our email correspondence by saying, "I feel like I have only so many words per day." I totally know what she meant.

It doesn't help that I have been fighting depression (yes, that is the technical term for the lovely cartoon character Major Funk), and a host of emotions usually gray to purple in hue, and also spending time with the kids through a holiday and Bob being out of town a great deal. I only have so much energy per day. (I am amazed at my fellow T21 mom-bloggers who have even larger families, or other challenges [including their children's serious health issues] and who are still able to post daily.)

And now that the bus situation, the thorny problem we thought was solved so we could move on to the next challenge, is back on our plates, I'm feeling more than a bit daunted. I'm quailing, flailing, and perhaps just failing.

I decided early this morning that I would not post any complaints today. I do not want to be a "downer" (sorry for the word). I want to celebrate our life with Stella in all its complexity. You can see from the pictures how beautiful and engaging she is. What's harder to discern is the exact nature of her gifts, from our perspective.

I promise to get it down, get it all down, in little pieces, a day at a time.

Today's tidbit is one of my favorites: Ever since Stella was a toddler she has been known for her hugs. Her cousin Elly once said, "Stella is the best hugger ever!" The past year or two, she has added a special touch: When she gives you a full-on hug, she also pats you on the back with one hand. It feels amazing. This little person is not only expressing love but actually comforting you, her caregiver or family member or friend. Just a little something extra.

new world, new words

The necessity of parents becoming advocates for their children. "You will be her advocate," the early intervention coordinator told us when Stella was just weeks old. Life presents you with a capital-C Cause, and you take it up and run with it.

I didn't want to become one of those parents, the ones who make trouble. The large, loudmouthed, anxious, angry woman at the orientation session for Preschool Special Education. She seemed to be looking for a fight. What was she so worried about? I wondered.

All the families at the Buddy Walk, the parents, all of us slightly dazed-looking, perhaps dazzled by the sunny day and the hundreds of smiling faces, all here because of something our children had in common. We were all part of a Community, there for a Cause.

A father, later in the day, exasperated: "Where's my idiot son?" Clearly referring to the one without Down syndrome.

So many words to avoid, to make you cringe. So many times a day you come across them. A whole new language to learn, words that have new meanings now: delays, intervention, diagnosis.

A beautiful little girl waking up in the middle of night for a drink of water then settling back to sleep, porcelain skin, sweet snoring, silky brown hair.

Day Two and reflections on NYC Buddy Walk 2007

This is only Day Two of Tricia's "Get It Down: 31 for 21" challenge, so I can hardly quit now, although I am exhausted! I am so glad I took up the gauntlet, because even this early on I feel revved up by being in touch with this expanded community. Thank you, Tricia!

I also have to thank the amazing Karen for giving a shout out on Strollerderby (hence the lovely badge Saint Nobody is wearing).

Since I have exactly 4 minutes left until midnight EST, I will make this as quick as I can. Our first Buddy Walk was a smashing success, even though we didn't manage to meet up with everyone we'd planned (some friends had their plans fall through). The weather was gorgeous, and I had reserved enough energy by sticking close to home the day before that I was able to manage getting Stella to Times Square by myself, and then our dear friend Jeannie provided invaluable assistance the rest of the adventure.

Stella began making friends during the Times Square video--a little guy named Brian who was there with his extended family, including a trio of puppies. Then, on the walk itself in Central Park, we were joined by my Uncle Phil and Aunt Cheryl and their royal golden retriever, Murphy. Stella and Kyle (pictured in yesterday's post) became fast friends and our families joined forces until the Warrior Princess decided she needed to ride instead of walk, and holding hands became too difficult.

I was so focused on making sure Stella was having a good time (which wasn't really that difficult) that I didn't get all weepy and emotional as I had feared. In fact, I only started to cry at the very end of the event, when Chris Burke and his band performed "Ob-La-Di, Ob-La-Da." It just struck me somehow. Obviously, it was the theme song for Chris's show Life Goes On, but like every Beatles' song, it has so many other resonances, private and public.

Chris was really great with all the families afterwards--that's him posing with Stella, which took awhile since I kept accidentally pressing the power button instead of the one that actually takes photos.

Sigh. I'm really reporting here, not reflecting. I will write more later when I'm in a more reflective place. Stay tuned!

P.S. Prince Vince's mama is giving away a pair of wellies!

NYC Buddy Walk 2007

Well, we did it! Stella and I went to our very first NDSS Buddy Walk ever, with the help of our friend Jeannie, my Uncle Phil and Aunt Cheryl, and Murphy the celebrity dog! This photo to me exemplifies the spirit of the Buddy Walk: Stella made a new friend, little Kyle, and they stuck together for at least half of the walk. Note that Murphy is also part of the team (with Uncle Phil's help).

To view the entire set of photos, click here. To view it as a slide show, click here.

gearing up to Get It Down

See that lovely button on the right-hand side of this page? It's the creation of Tricia at Unringing the Bell, who came up with a wonderful idea for bloggers who love someone with Down syndrome.

During October, which is Down Syndrome Awareness Month, Tricia is challenging us to write a post every day that says something thoughtful about our experience of Down syndrome. I'm taking the challenge!

Click the button for more information, and stay tuned for the postings starting Monday!

what the future holds...?

Last night I read a blog posting by Michael Berube, eminent culturual studies scholar and parent of a teen with Down syndrome (author of Life as We Know It: A Father, a Family, and an Exceptional Child). Berube writes a lot about his son Jamie on various blogs and in magazines. The entry basically addresses some of my worst fears and confirms some of them.
Here's an excerpt:
And I hope I haven’t given people the sense that everything is just wonderful with Jamie all the time, and that Down Syndrome isn’t such a big deal if you just take the Right Attitude. (There’s a little story in the DS community about how having a child with DS is like winding up in Holland when you’d planned to go to Italy, and while this story serves the crucial function of reassuring new parents that their lives are not ruined or blasted or just plain over, it’s really not a very good analogy, in the end.) There’s a reason why so many Jamie Stories involve me taking him on trips or playing golf with him or going to aquariums and zoos with him: it’s not like he has friends. Oh, people are mostly very nice to him, and kids greet him cheerily in school and in town, and his teachers and aides like working with him, because he’s a great kid. But he doesn’t have the kind of social network other fifteen-year-olds do; he doesn’t do sleepovers and play dates and just hanging out.

OK, so it's not just us. I'm planning Stella's sixth birthday party and facing once again the fact that the only children there will be her cousins. Even at her school, she does not really have "peers." And her delays in expressive language make it difficult for her to make friends. Sure, most people are friendly, and I am frequently treated to stories of this or that person's encounter with someone with DS in their past--usually of the "they're so sweet" "They never know a stranger" variety. They mean well, and at least it's better than frightened stares, or taunts, or Flava Flav style insults. But it doesn't exactly put a mama's mind at ease.

Berube goes on to discuss health care and other issues of Jamie's future. One thing that is terrifying is the high incidence of Altzheimer's in people with Down syndrome. He points out this article in the Globe and Mail (keep trying and you can read it without having to subscribe)--one of the biggest downers (pun unintended) I've read in a very long time. Giving a painfully detailed account of a 55-year-old woman with DS who has AD, it's actually entitled "Doomed from Birth to Death"! Geez, folks, give us something to work with here.

It is freeing in a way to read Berube's bracing and detailed prose, which painstakingly delineates the issues facing parents of a person with DS. This beautiful little girl--our Warrior Princess with her determination, her personality, her sweet little face and kisses, her grumpy tantrums, her joys and frustrations--has a future that is arguably more uncertain than a "typical" child. I'm so tired of parents who do not have children with special needs trying to equate their struggles with ours. I realize they do this with the best of intentions, trying to de-emphasize our family's "difference." But it actually has the opposite effect, as far as I'm concerned. They have no idea. I'm not being a drama queen. I don't want a pity party. I'm just being realistic.

Part of the problem I am having in writing about my experience parenting Stella is I'm afraid the whole thing will sound like whining. I suppose in once sense it is the question that plagues all memoirists--"Am I being self-indulgent?"--and in a way memoir is inherently indulgence, but I want to make sure there is some value for the reader. That's my goal, anyway.

Evening

The child is screaming on her father's lap.
The lights are off, the rocking chair's relentless
urge impels her back and forth. She's screamed
the whole way home, the cab a mess of wrath,
the driver silent, everyone on edge,
the mother, in front, trying not to cry.
We have a little girl. She's one of "those
children," the "special" ones. "A little retarded girl."
"You know They find it hard to deal with change."
Finally,
she's quiet. Overtired, overfed, overstimulated
it's taken much too long to get her down.
Tomorrow she'll be up at six for school.
We'll put her on the bus and breathe a sigh.