joseph cornell in san francisco

Yesterday I went with a friend to see this amazing exhibit of the work of Joseph Cornell. http://www.sfmoma.org/exhibitions/exhib_detail.asp?id=264

I found his work, and the info about his life, to be extremely moving and inspiring. One thing I didn't know was that Cornell's brother Robert, who had severe cerebral palsy lived with him towards the end of his (Robert's) life.

If you are going to be anywhere near the Bay Area while the exhibition is on, I highly recommend it!

goin' to california

Despite fire and smoke and hot, hot winds, I am heading to the Left Coast--my first time ever in the Golden State. I'll try to post as much as I can, but I'll probably miss a couple of days this next week.

I'll miss my babies tremendously, but they will be getting some extra quality time with their beloved Dad. Whom I will also miss very very much!

In the meantime, please check out some of the blogs in the links lists.

Keep the faith!

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!

remembering Gabe

It's hard to believe it has been a year since my young brother-in-law left this earth. People still find this blog by googling his name. He is missed by many, many people. Katy and the boys are doing really well. I'm so proud of my baby sister, the strong woman she has become.

If you're a new reader and would like to know what I'm talking about, please click here.

Gabe was all about Down syndrome awareness. He was one of Stella's godparents, and his little brothers Levi and Eric were some of the first kids with Down syndrome that our family got to know. His mom called me in the hospital the day Stella was born to offer her support.

Typing through tears. Gotta go now.

poetry, a little

I've been so absorbed in the 31 for 21 posting that I haven't said much about poetry, my other great love. I've been writing some, and revising some, and reading and hearing a lot of really great stuff.

Check out my list of links to poetry goddesses--there have been some updates lately.

And read a poem today!

tired

I'm tired. I had some deadlines this week, and some family/friend events to attend today (one happy, one sad).

Stella is doing really well. So is Bobby.

I'm going to eat a little more ice cream and read a book about the brain!

Happy 100th Post, Saint Nobody!!!

Yes, it's finally happened, and how appropriate that it occurs smack in the middle of Down Syndrome Awareness Month (and could it have happened without Tricia's challenge? Prob. not.).

In honor of the Saint's centenary entry, I would like to officially announce that Saint Nobody, the poetry collection, has been accepted for publication by Red Hen Press! More details, and plenty of grateful admiration for this wonderful press, will most certainly be forthcoming. Don't change that dial!

Thanks to an anonymous tip from a Very Scholarly Blogger, I researched the medieval concept of a "Saint Nobody" and found the illustration you'll see if you scroll all the way the the very bottom of this page. The motto reads, "Nobody is my name that beyreth [beareth] every bodies blame." I'm considering asking the designer to incorporate it into the cover art.

Now it's on to revising the manuscript! Woo hoo! (or, as Tricia would say, "Woot.")

and Now We Are Six

Cake princess
Originally uploaded by saint nobody

Stellabella and her princess cake, from the family party on Saturday. It was at a local bowling alley that also has party rooms. She had a blast--while her brother and cousins were bowling, she was helping Mom set the table and "test" the cake.

beyond words

The little girl says few words that are clearly distinguishable, but boy, can she communicate. She babble and prattles but now, at age six, she is no longer just "jargoning," in speech therapy parlance. She is not just imitating the patterns of her mother tongue, she is saying words and sentences she understands--she knows what she is talking about. She approximates, and very often we can understand what she is saying. We also become accustomed to her usual approximations, familiar phrases--"Mom, could I please have some water" sounds like "Mom. Quee-eye-buppa water?"

She does have this habit, when she is denied a request, of simply repeating that request, several times if necessary. Repetition, to Stella, seems to be a mode of argument. It is frustrating sometimes, but I find that if I alter my response to avoid the actual word "No," she will capitulate and often let the issue drop. At bedtime, for example:

"Mom, can I have a book?"
"No, Stella. It's time for sleepies."
"Mom, can I have a a book?" (identical inflection)
"No, Stella. I told you. It's late, you've been put to bed, it's time to sleep."
"Mom--" pause until she has my attention again-- "Can I have a book?"
I come in close, kiss, snuggle her neck. "Nighty night."
At this point, she gives in and settles down.

---

Why do I write? I write because Stella cannot, because she may never be able to get down on paper her own experience. I write because I need to tell what it is like, what it is like to be her (I conjecture this), I write to exorcise guilt, I write to ask questions like, "Does she understand why I slapped her hands for going on the roof or slapped her bottom for pooping in her pull-up?" (Is it just about me making sure that she is properly afraid, that she learns to sense danger or at least builds a store in her memory of what things and places are dangerous? In trying to ward off danger, Mommy becomes the danger.)

I write because no one else can get to know this little girl in the way I can, because no one else is her mother. I write because I need to learn what it truly means to be her mother, I write to instruct myself in how to live this life.

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.

rude awakening, or here we go again

This morning we were awakened by a phone call--no, let me be honest, we were already awake, and it was 10:30 (one or both of us may occasionally go back to sleep after the kids get on the bus, esp. if we have been up late working the night before).

Anyway, the call was from the Office of Pupil Transportation, informing us that Stella's bus schedule/route was changing YET AGAIN. After a week and a half of a more human schedule (picked up at 7:45 a.m., dropped off at 4 p.m.), she is going back to a 6:30 a.m. pick up, the 1st of 9 kids. ???????????????

The woman on the phone could not even tell Bob the bus company, let alone the driver.

Needless to say, it felt as if we were back to the drawing board. I called to check on the medical form we submitted last week and had to leave voicemails. We finally got a response: the forms are being reviewed by their "staff pediatrician," and if our pediatrician's recommendation is approved, the information will be put in her file.

In the meantime, we have no idea who will be picking our daughter up and driving her around starting Thursday (or was it Wednesday? I am really mixed up at this point).

Hello Art McFarland? The story continues...

Meanwhile, Stella Bella is here next to me as I type on the bed, showing no signs of going to sleep. She's awfully darn cute, though!

an American Girl

Picking out a Bitty Baby at American Girl Place.
The rest of the birthday photos are on Flickr.

it's my birthday...they threw me a parade!

Christopher Columbus waves from the Santa Maria while Princess Stella looks on. (Fifth Avenue style.)
She was born on a Columbus Day six years ago...appropriately enough, since she is one-quarter Italian! This is the first year that her birthday has fallen on Columbus Day since 2001.

Go Stella, It's your birthday!

Birthday lunch with Mom: grilled cheese at Burger Heaven.

giving up, giving in, giving, giving, giving

I'm sorry I missed a post. I truly am. I started this really brilliant meditation on language, images, misinterpretation, and the semiotics of Myspace. I even saved it as a draft.

But I just couldn't finish and post it. Bob was away for this weekend playing out-of-town gigs, and had an in-town gig today, and had had recording sessions Wednesday and Thursday, so basically I was on my own with the kids for a few days. It's exhausting. It's often very demoralizing, too, since even though I've been in a much brighter frame of mind and have kept Major Funk from ruling my every move, I have my limits. (Believe me, the Major is one tough commanding officer. And he's no cartoon character.)

Yesterday I was trying to get us all downstairs, with the stroller and accoutrements, so I could work out before the child care closed at the gym. We're on the second floor of our building, so there is usually a bit of a lag before Miss Stella decides she is going to walk down the stairs. In the meantime, I carried the stroller down, set my heavy backpack in it, got the mail out of the box. Just as I was wondering what was taking our little miss so long, Bobby realized that she had gone up instead of down, and he ran up the two more flights to find that she had gone on to the roof.

Yes. You read that correctly. The roof. There is a door to the roof, and we and our neighbors will occasionally go up there to watch fireworks on 4th of July and other such things. There's a great view of the Triboro Bridge and the eastern Manhattan skyline, plus Hell's Gate Bridge and all the surrounding neighborhood.

The roof is fun, but it's not exactly high security. There's a ridge a couple feet high going around the perimeter, but that's certainly not enough to keep an active child from...well, I won't even write it.

So now we realize that Stella is not only interested in the roof, but is capable of opening the heavy door and going out there. This is the second time in about a week she's done it. The other time was when Bob and I were talking to Art McFarland after the Channel 7 interview/filming. (We thought she and Bobby were both in the apartment. Imagine our surprise when we went upstairs and found our son playing his DS, and our daughter nowhere to be seen.)

Yes, there is a "lock" on the door. It's basically a huge hook and eye, and it's really hard to secure (mainly because the door has been painted over so many times that it doesn't close tightly), so it is rarely secured. I even called the landlord last week and told him about this concern. Obviously, nothing was done about it.

So this time, Bobby (Stella's hero) ran up the stairs and grabbed her to keep her from going anywhere before I could get up there. She was sitting in the middle, nowhere near the edges, playing with her Emily Elizabeth doll. She was very upset when I grabbed her, carried her down the stairs, and strapped her into the stroller. "No roof! No roof!" I said, as she wailed.

Later, as we wheeled down the street I said to Bobby, "Remember what I was telling you about adrenaline the other day? That kind of frizzy feeling that's going through your body right now? That's from the adrenaline that was released while we were rescuing Stella. Try to breathe and relax and you'll feel better in a little while."

No, I'm not blaming the landlord, or anyone else. Yes, we are responsible for our child, but it is incredible what she can accomplish in just a few minutes out of our sight. "Constant supervision" does not even begin to describe it. Time with Stella is a joy, a series of discoveries, it's snuggly, it's lively. It's also draining after a certain period of time without a break.

I'm grateful that she has been going to sleep at a normal hour the past few nights. Let's hope her nap today will not keep that from happening again tonight. [wishful thinking]

To be clear: I love these little dudes tremendously. They enrich the world in general, and my world in particular, by their very presence. I love being their mom. But I'm not always sure I'm very good at it. I guess one is never sure of that.

let's pretend it's still October 5

...and that I have enough energy and brain cells on line to write a post right now. I had the bright idea that I needed to take the kids into the city after school today. We went to the Mid-Manhattan Library, then to Grand Central Station (yup), got some groceries at the marketplace, then back on the subway home.

It probably goes without saying that there are lots of weird and rude people out there (and lots of nice ones, too), and they all come together at rush hour.

But I'll say it anyway. Trying to marshal two active kids, one in a stroller who wants to get out when she needs to stay in, and stay in when we need her to climb stairs, is "a Challenge." Luckily, a very nice woman carried the (empty) stroller up the stairs at Fifth Avenue so I could concentrate on keeping Stella from running down 42nd Street. Other fellow humans were not as helpful, like the crazy man who decided it was his calling to tell me to "calm down, Miss" when I was holding Stella down in her stroller on the platform at Queensborough Plaza. (It took me a minute to realize he was not just a garden-variety busybody, but really did have a screw loose.)

Then there are the lovely folks who make no moves to allow room for a dazed mother with her kiddies (one of whom has a fairly obvious disability) to sit, or even stand comfortably with the stroller, and then give the lucky mum dirty looks when the stroller accidentally bumps against the foot they have so generously extended into the middle of the aisle.

I was going to post a fuzzy photo I took of the kids on the train, but I think one of my fellow new yorkers must have stolen my digital camera while I was distracted by one kid or another. [UPDATE: found the camera, obviously.]

Remind me: why did I think it was a good idea? Oh. It was "An Adventure." And I got some really good baby bok choy.

music to my ears

"You are released from telephone standby jury duty as of today. You are no longer required to call. Thank you for your service as a juror and for participating in this civic obligation. To repeat this information, press 7."

Halleluah!

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!

bus info for parents with children in the NYC special education system

NYC Public Schools Special Education Buses Busing Bus problems routes delays CSE New York City Office of Pupil Transportation OPT DOE Department of Education
We take a break from our regularly scheduled blog postings to assist other parents who may be in the same situation we just went through.

If your child is in the NYC public schools special education system and their bus schedule is not fitting his or her needs, here's what you have to do. You need to get a form entitled "Request for Medical Accommodations to be Completed by Student's Physician." You also need to complete a HIPAA form (authorization for release of health information). After the doctor completes the form, send them both to the Transporation Liaison for your the borough in which your child attends school.

The request form is not available online.

As we have learned, it is notenough to have the doctor write a letter and give it to the child's school.

If you are in Queens, contact the Transportation Liaison for CSE 4 and 5, Sharon Maynard at 718-391-8420 to receive the forms. Send completed forms to the Queens Integrated Service Center, 28-11 Queens Plaza North, Long Island City, NY 11101.

In other boroughs, contact the Parent Coordinator of your child's school for more information.

Good luck everyone!

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.

finally.... Photos!

After years of lameness, I finally figured out how to download photos from our digital camera to my computer. As I prepare for the big Get It Down post #1 (about the Buddy Walk), I'll leave you with this one, entitled "Stella Sphinx."