Today, a poem I wrote some years ago, about Jonah’s birth:
When finally the doctors sigh,
speaking masked amongst themselves,
and cut you
howling
out of me, I am but a writhing animal,
drugged and brazen-blind by dazzling alien lights.
Then there are pillows, and silence,
and you are sleeping on my chest
and suddenly I have a star, and the moon,
and everything else unceasingly celestial…
my view so clear I memorize the shape
of every constellation.
Posted in doctor, hospital | Tagged 2002, birth, c-section, hospital, march 7 | Leave a Comment »
There is a fine line between telling my story “sans sugar” and telling too much, or, worse, lacing it with saccharine. The truth is, the narrator is still not exactly sure where she belongs in this world, if she belongs in it at all – but also that this doesn’t matter. It’s all about Jonah.
For an only child like me it’s a tough pill to swallow sometimes. It isn’t at all about me. And yet, can I be relieved of my role in all of this? Of course not. Jonah needs his mama.
Still I sometimes think: I can’t live this life anymore
And: What a nice hot day to park the car at the top of the Rhinebeck Bridge — so perfectly inviting for suicidals – no barriers to your leap, yet reminding you every few hundred feet or so that LIFE IS WORTH LIVING. I know I have mentioned this bridge before. I’ve always wanted to fly, and that view is so spectacular, and if I ever did come to that fine line and cross it, I think that would be my place to fly-bye
And: I wonder if other people have places in their minds, like I do. My place is like the cyanide pill they ostensibly give you when you go up in the space shuttle. It is a choice you may never have to make but one that’s comfortingly there nonetheless
I still, though, think: I have to do whatever it takes to ensure Jonah’s health, education, happiness, and nurturing. I must ensure everything. Some of that everything is making sure things can stay the way the are, and it looks like things are going to need my help for that to happen
And I berate myself: You ain’t going nowhere, fool
And I can dance around things that were said this weekend, and all the millions of ways, as usual, in which I was spectacularly weak. But I’ll post pictures too, for Jonah was mostly good, albeit scattered and frenetic.
It was a sunny day, almost too hot. A beautiful Saturday, and a good portion of Jonah’s day and mood mirrored that.
Andy was kind enough to drive Jonah up to visit us at my mother’s house.
my mom’s next door neighbors kindly let jonah use their play-set and pool, once it’s opened. jonah asked for “Pool?” a dozen or so times.
At home way at the top, my climber-boo
hey mama!!! hey mama!!!
Eventually he wanted to go see train so we piled in the car, Jonah singing along to the Top-40 Andy’s got on the radio. We were relieved to see the green light down the tracks meaning a train is coming, so we pulled into a parking lot to wait and watch for it, like we’ve done hundreds and hundreds of times before.
This time, though, he got scared of the train after a few seconds.
This was the last of the pictures for the day.
Out of nowhere he grabbed for my hair. I know what to do when someone pulls your hair (grab their fist and pull it in toward your head) so it wasn’t a big deal. Andy got out of the car to let me out of the car, and then Jonah burst into tears, sobbing and upset. Within minutes, though, he was okay and we were able to say bye bye to the train (thank God it wasn’t a long one) and go back to Grandma’s for another shower. His beloved train reminded him of how much he misses home? No. Don’t invent things inside Jonah’s head, I tell myself. You’ve got enough troubles inside your own.
Today M and I went on a long Sunday ride, just like in the olden days when it was deemed neither wrong nor unusual to do so. When we got home I planted flowers in the God-awful hot for about 13 minutes until I felt I would die. I thought about Andy, and how unless I am mistaken he is working for somebody today doing some mulching under this same heat, and how under that same sun too my boy probably asked for pool ad infinitum.
Tomorrow I have to go back to producing numbers; here I can produce words. It’s a fine line, my tightrope. Sundays are difficult. And I only took 3rd place in a “query letter” contest I was hoping to win. And I’m not schooled in query letters. Looks like I have some work to do. First place was the opportunity and $500 to self-publish.
I don’t really want to self-publish anyway. Isn’t that, after all, what I’m already doing?
Anyway. Jonah has his daddy close-by. Today, after all that hot work in the sun, Andy came and got Jonah and kept him for another part of the day.
“He was fine,” Andy told me on the phone. “He had a fun day.”
For me, for now, it is enough. As usual it is still only early evening and I am bone tired. I imagine Jonah settling in to sleep. I miss watching him sleep but imagining it is sweet — I can use memories and visions and dreams. It is good.
Posted in Anderson School, autism, behavior, grandma, singing, swimming, The Anderson School for Autism, trains, Uncategorized | Tagged pool, rhinebeck bridge | 4 Comments »
“And this is why my eyes are closed
It’s just as well for all I’ve seen
And so it goes, and so it goes
And you’re the only one who knows
“So I would choose to be with you
That’s if the choice were mine to make
But you can make decisions too
And you can have this heart to break
And so it goes, and so it goes
And you’re the only one who knows…”
And So it Goes, Billy Joel
The phrase “and so it goes” appears 106 times in Kurt Vonnegut Jr’s book Slaughterhouse Five. The story continually employs the refrain “so it goes” when death, dying, and mortality occur, as a narrative transition to another subject, and to explain the unexplained. (from wikipedia)
This morning was the first of 5 doctor visits for Boo up here in Albany…and each time he’ll be escorted by his peeps, E & J. Today we saw Dr. S, the glaucoma doc who is borderline strange but quite efficient, matter of fact, businesslike, and nonplussed * unaffected by Jonah’s colorful personality.
The nurses and staff all know us by now and are very kind to Jonah. When we go there we wait in the hallway outside so Jonah can pace around, and they come out to get us when doc is ready. In the meantime Jonah frolics in the hallway, crouching and running and shouting happily. He loves E & J. I love them too.
J put gloves on Jonah, and they played high five and gimme the pound, bumping fists. Jonah’s getting to be such a good boy at his doctor appointments. He is brave and sweet and funny. Even if I’m under some sort of mother-spell skewing my perception completely, it feels good to have seen him, all lovey and silly. Precious Boo.
He’ll need another eye operation; they want to take the Reticert implant out. It’s been there 2 1/2 years now and Dr. S wants it out soon, so Jonah will have another appointment with Dr. S, but first an appointment at the pediatric rheumatologist, a pre-op appointment at the eye surgeons, then the surgery itself, then follow up appointments, etc. Can you imagine if I didn’t have E & J? Andy or I would have to pick him up and drop him back off every time. The transportation to and from doctor appointments, paired with two individuals like J & E, is an invaluable service and responsibility. I have no idea how they do it. Thank God they do.
You probably can’t tell, but he’s laughing his head off here, wearing his exam gloves and knocking on the door three times, shouting “knock knock knock!” each time. Little peanut butter, E calls him. He wanted me to give him noogie and knock knock knock lightly on his noggin, silly with giggles and ready for mischief. Wan go van? he’d ask J on occasion, and J would distract him with lists of delicious things to eat: french fries! pizza! bleu cheese! circle pepperoni!
When it was time to go I kissed Jonah soundly as he settled into his cushion-y nest they’d made for him in the back of the van. I entrust him to others.
I have to, but with E & J, I am actually glad to.
* I believe that most people misuse the word “nonplussed” – including me. I always thought it meant “unfazed.” Turns out it means exactly the opposite.
So it goes.
Posted in Anderson School, autism, doctor, Uncategorized | Tagged glaucoma, juvenile arthritis | 1 Comment »
I celebrated my Mother’s Day yesterday with my mom and Jonah and Jonah’s dad Andy. We didn’t do anything particularly special, except Jonah (read Andy) got me a lovely basket with candles and soap and lollipops in it.
Jonah (read my mother) also got me a gift card to TGIFriday’s, and a yummy box of chocolates. And Jonah (read M) got me a beautiful jewelry armoire, and Jonah (read my little “adopted daughter J”) sent me a dozen roses!
My dad sent me a simple, beautiful card that touched my heart. Friends are texting me, e-mailing me: Happy Mother’s Day!
Jonah sure is generous, through the hearts of so many who wanted to give him the voice to tell me he loves me, on this first Mother’s Day without him. Thank you, little Boo and all who speak on your behalf. I love you so. I do not want to tell you how I cried bitterly into my pillow this morning, feeling sorry for myself because my only child is far away from me. So I will tell you instead how grateful I am to have my beautiful boo, my sweet precious boy. I will tell you it is not even noon and I have wiped my tears and planted seeds in my garden — morning glory seeds to climb and wrap themselves around things. Soon I will go outside and play more in the earth and dirt, turning over soil and, without getting all weird about it, allow the sun and earth to mother me.
Yesterday was also a beautiful day for Boo to enjoy – we did all Jonah’s favorite things & haunted all his familiar spots:
Sipping on some strawberry milk…in the tub
Swinging high on his favorite swing. Luckily, no one else has ever been on it when we’ve gone to the park! There’d be trouble…
Looking longingly at the Hudson River. He’d get naked, jump in, and swim around for a long while if we let him…it was 84 degrees, too…
More longing for the water…
He finally leaned so far off the dock that he could swish his hands in the water…
…but daddy was right there. I think if they fell in Jonah would be rescuing Andy!
…and of course among the pansies Valiant Valerie whispers “Happy Mother’s Day!” to me, her adopted mommy…and to my own mom – to all mothers and not-mothers everywhere…to those who wish they could be mothers, and to mothers who have lost children…to those who have chosen not to have children, and to those who have made adoption plans for children they could not care for….for all the mothers crying today, for all the mothers laughing today…for all the children and adults who have lost their own mothers…
Have a happy, blessed day anyway, everyone.
Posted in Uncategorized | 5 Comments »
Today Jonah was a little lover, if a bit screechy and semi-hysterical. I guess the usual. Only one small glasses-snatching hair-pulling incident, but Andy pulled over and got him off me. “Daddy in backseat?” asks Jonah incessantly, but neither my mom nor I can drive Andy’s stick-shift car so Jonah’s gotta choose between grandma or momma to have in the backseat with him. “Momma in backseat?” he decides in the form of a question.
He requested “Noogie?” right away. I guess that’s how you spell it – when you rub your fist into someone’s head. He loves playing knock knock knock on his head too, and though it had fallen out of fashion, his new gimme-the-pound (where you bump your fists together) has brought back the memory of his sensory-input fiesta.
Speaking of Fiestas, it is Cinco de mayo. “Say cinco de mayo,” I told Jonah.
“Cinco tomorrow,” he answered with his big grin, shaking the maracas I’d brought him. The pictures tell the story, a good one today, thank God:
(Watchdog Wally’s holding the maraca)
He’s shaking the maracas so fast that the one is blurry…
My big Boo, watching his beloved water…
Posted in Anderson School, autism, Uncategorized | Tagged Watchdog Wally | 2 Comments »
To the best of my knowledge Jonah has been a very good, happy boy for the past 5 days or so. Why? Nice spring days again. Playing outside, swinging high in the sunshine. The right dosage of meds finally. Divine intervention. Right now I don’t care.
Yesterday when we sent to see Jonah he was a very good, happy boy – and we did the usual things but he was having so much fun, laughing and singing, giggling and lovey. I took a few great pictures that capture his joy, and the feel of the day…
My mom drops me off after the visit and we look at one another: my long, bony hand holds her long, bony hand — and we say, sometimes in tandem, “Thank God.” I remind myself not to hope. Wait, that’s not quite right. Always there is hope inside me.
It’s more like the expectation of permanence I need to dissolve. I am so grateful. Now. Now. I am grateful now. Stay in this place, Amy. It’s the only place to be, really. Anything else is an illusion, the voice inside tells me.
“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island opportunities and look toward another land. There is no other land, there is no other life but this.”
~ Henry David Thoreau
Posted in Anderson School, autism, grandma, Uncategorized | Tagged Henry Davod Thoreau | 2 Comments »
When I was 25 I applied for a job as parish secretary at St. Francis de Sales Church. The pastor was Father David E. Noone, and the staff hired me while he was away in China. He came back to the church, and to a new secretary. We clicked and hit it off right away, and my years there were so valuable. Father is a wonderful person in too many ways to get into here, but suffice it to say I’ve always looked up to and admired him.
As of April 20, he’s retired. And not just retired, but moved to the (gasp) South. Ugh.
My father and I went to his last Mass, the Sunday after Easter. I elbowed and excused my way into Father Noone’s communion line. I’ll be damned (pardon the phrase) if I was going to take communion from some layperson Eucharistic Minister – this day, this last Mass, I wanted to take communion from him. (I have no business taking communion at all, really, but I like it and I take it and I think God is okay with that). And so I did. There was a moment when Father and I locked eyes, and it was one of those rare real moments. A grace-filled moment of understanding, with a little mourning, and pure Christian love.
Father Noone married Andy-and-me (inside joke to the one who’ll “get” that), and he baptized Boo; I remember Jonah pitching a fit and fidgeting through the whole baptism Mass – until Father Noone poured the holy water on his head. Then he was fine, for a while.
Jonah’s first water fun!
I was the one who cried. I remember feeling incredibly moved…the baptism sacrament is so sacred and beautiful, and Father Noone made it special. I’ve come to appreciate Mass again, though I became a Father-Noone-Catholic, if you know what I mean. You’d have to find me another priest like him, and you’d have a big challenge ahead of you if you tried.
So the other thing is they went and changed parts of the Mass. If you haven’t been to church in a while, all ye Christmas and Easter Catholics, be warned. You don’t even get to say “and also with you” – which was one of my favorite parts. I said “and also with you” anyway, even though they’d put the new follow-along words up on a screen for the changed parts. So that was a little strange.
St. Francis de Sales isn’t St. Francis de Sales anymore, either – two parishes merged into the St. Francis de Sales building/church, and they renamed the church Christ Our Light. Sounds more Protestant than Catholic, not that there’s anything wrong with that. So Father met the challenge of merging two parishes with aplomb, and led his new flock well. He’s the kind of a humble shepherd who never holds himself above you, and he’s got this great, slightly irreverent, sense of humor. I’m going to miss him.
I’m avoiding writing of Jonah. He has not made it through many days at all lately without behavioral managements (the take downs) where he becomes suddenly and out-of-the-blue aggressive, biting and kicking and scratching oh my.
This blog is a record on skip. They can’t mess with his meds right yet because he’s going to be starting a new med to treat his juvenile arthritis. And then they need to watch to see if the meds help alleviate the pressure in his left eye from the glaucoma. And then they’re going to want to remove the implant in the eye, the one they put in two and a half years ago.
So I feel awful when they call of course and for countless reasons. There isn’t anything to say. No questions, your honor.
We can’t find a pattern, though we’ve been trying since he was six or so. Maybe before that. I’ve got it typed out somewhere in the Wayback Machine. I can’t help imagining Boo in pain. Some kind of pain. And then trying not to imagine it. Or wanting to fix it, and not knowing how. Lots and lots of theories and not much proven, or else we’d all be on board. Right? I have no idea. I really don’t. I remember Dr. Reider’s wise words: “Correlation does not necessarily imply causation.” I doubt, and look for evidence. Do I sound over-proud? – look where it’s got me.
I just want my kid to be at peace inside.
Peace be with Boo. And also with you.
Posted in Uncategorized | 3 Comments »
