Posted in doctor, hospital, tagged 2002, birth, c-section, hospital, march 7 on May 21, 2012| 2 Comments »
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 autism, behavior, doctor, hospital, Uncategorized, tagged Albany Medical Center South Clinical Campus, eye operation, glaucoma, sleep on March 20, 2012| 4 Comments »
Monday morning, and it was so early. 6am, which meant E & J & Jonah had been on the road since 4, up since, what, 2:30am? 3? J stayed with Jonah, cat-napping in the van. E & I signed paperwork and I gulped coffee. When they brought Boo in we went over to the toys in the children’s area.
He played a little…
… but was mostly very tired. Yawning...
I suited up and held his hand as they wheeled him into the operating room for his exploratory procedure. His eyes grew big and frightened. “Just like when you were born,” I whispered, looking around at all the metal instruments, tables, and lights everywhere. “It’s okay angel. Mommy’s here,” I said. The part where they put the gas mask on your child is the hardest. Jonah struggled, scared, then a little bit of spittle appeared at his lips and he went to sleep. It’s hard not to panic. A nurse kindly ushered me out and I joined E in the cafeteria while J napped in the surgical waiting room.
When Jonah was brought into post-op, they called me in first. Jonah tossed back and forth and I kept repeating “mama’s here, angel. mama’s here,” until his eyes focused on me. I gave him kisses, brushed his damp hair back. Then I saw he was gonna puke so I got one of those puke dishes, guided him up, and held it under his mouth, not a moment too soon. He puked and puked and puked again, before laying back, exhausted. A kind nurse brought him a popsicle, which I assumed was really some flavored electrolyte-replacer, and Jonah ate a few nibbles. I put balm on his chapped lips. After a few minutes he asked for J, then repeatedly, so J and E both came in to see us. J lay right down with Jonah, almost, cradling him. This big, muscular, scarred, toothpick-chewing boxer turns softie with my little broken boy.
Then Jonah pukes all over himself. We replace the robe. I catch the puke in another basin. The room is full of puke trays and washcloths and tissues. Suddenly Jonah says “go baffroom?” and tries to get up, quickly. “K, homie, let’s go,” J said, expertly guiding both Jonah and his IV pole into the restroom. Here I am, all proud that Jonah asked when he needed to go to the bathroom, reveling in that pride, and as I stare at the restroom door I see a red light flash above it, accompanied by an alarm. “They need help,” I called out automatically. Someone opened the bathroom door and went in, and I caught a quick glimpse of the chaos within. Puke and pee and poop, all over the place.
When they finally came out and Jonah came back to the room, dressed in a hospital gown, J excused himself to go wash up. He’d been, um, spray-splattered. He was exhausted, nearly gagging, and went off to clean and go outside to get some air and Jonah’s change of clothes.
This man is probably paid twelve dollars an hour. I might be shooting high on that guess.
When he came back in, he was himself again. “Me and homie on a whole new level now,” he joked, putting his arms around my boy as E figured out all the appointments, coordinating it all.
When we loaded Jonah back in the van, a comfy pillow and blanket set up for him, I watched my boy settle into the soft nest, put his thumb in his mouth, and sigh.
I started crying in gratitude and frustration. It’s not fair that Jonah has to have autism and have operations and other things wrong with him he can’t even understand, and it’s not fair that people like J and E, and all the caregivers — these amazing, wonderful, patient people who literally care for and watch over our children — are paid so little. Why? I am not pointing a finger at my son’s school. It’s like this everywhere. They don’t have the funding? Who decides who makes what kind of money?
For that matter, why can’t they institute a sliding-scale tuition based on the parents’ income, and put that money toward salary hikes? I’d gladly get on board and pay my share. Not all disabled kids are from poor families. So the rich disabled kid gets exactly the same free services as the poor one? It doesn’t seem right. When the kids become adults I can see the equality, but until then I say the parents who are able to should work together to raise the salaries of people we are counting on and grateful for.
Somehow I got on a rant. I really didn’t mean to. Basically his eyes looked good. Jonah’s left eye had high pressure, but that could have been because he didn’t have his eye drops that morning… so they’ll take a measure in the regular office next week, then see what’s what.
They called me today to tell me Jonah had a one-person takedown (a wrap) to keep him under control. I was at my doctor’s office when my cell-phone rang, which was weird. And it’s always a strange conversation, because it’s almost always bad news and so I find myself hoping for news which isn’t that bad. And there isn’t anything to say – they’re required to call a parent when there is a takedown. Okay then, thanks for calling. I’m really sorry. I hope nobody is hurt. (I know someone is hurt, of course). Sometimes I don’t even want to know these things.
Sometimes I want to know nothing at all.
Posted in autism, doctor, grandma, hospital, singing, tagged car ride, eye operation, glaucoma on March 18, 2012| 4 Comments »
I’m tired, and a little sick to my stomach from thinking about the pain my boo will be in – again. After the first eye surgery was the first time in his little life that he’d verbally expressed pain. “Eye hurt!?” he cried, more beg than announcement. Help me. Do something. Why do I feel this way? And we, helpless, holding him, rocking him, offering him pain meds that obviously weren’t working well enough.
Yesterday my mom and I drove down to see Jonah. We cycled through our routine – sandwich, bath, barbecue potato chips, black soda (or sometimes, now, cranberry juice), cookie. Jump jump jump on the bed. Car ride. “Daddy in backseat?” asked Jonah, but I can’t drive a stick and I wasn’t about to put my mom in arm’s reach of my volatile son, so Jonah had to settle for mama. On the ride he sang with me and then stared out the window, sucking his thumb two different ways:
Then we drove to the park, and visited the ducks
and he got to swing on his favorite swing
then on we drove, down to the river, where the train tracks run
Jonah and his dad watching the waves from the wake of a ship
When we were done there Jonah wanted another bath and The Wiggles, so we drove back to the apartment…
And all the while he seemed fine –but then he puked. My mom and I cleaned it up while Andy did the bath part. I am going to talk to the nutritionist ab0ut the possibility of stomach troubles with Jonah. He’s been throwing up kind of a lot.
He did very well for his rheumatologist appointment on Friday. Thank God it was indeed E and J again who drove him up to Albany; I guess it will pretty much always be them. You don’t know what it means to me to have them. I will never forget their kindness, to me and to my boo. Their ability to keep track of everything, keep Jonah busy, keep everything together –it’s all so awesome. I know I say this over and over but I can’t say it enough.
Still, I’m not at all looking forward to tomorrow.
Posted in Anderson School, autism, behavior, grandma, hospital, snow day, The Anderson School for Autism, Uncategorized, tagged Anderson Center for Autism, Fearless Fred, flash mob, Guster, Scare-Me-Nots, snow, there's always tomorrow on January 21, 2012| 1 Comment »
It was crappy, very cold, fine-snowy weather when my mom and I left early this morning to meet Andy at his apartment and then collect Jonah. The kind of weather where if you just avoid the first few hours of driving in it, you’ll be fine. Well we were the ones on the road during the slippery beginning of the storm. My mother wanted to drive us down in her car so that’s what we did.
Nothing can stop her from visiting her grandson. Nothing.
I believe she’d trudge through a blizzard in boots all 90 miles if she had to. I was laughing to M about how this would be my death day, walking around the house singing “and when I die…and when I’m gone, there’ll be one child gone in this world, to carry on, to carry on…”
“Stop that,” said M.
But we survived the small storm and got our visit with Jonah. I brought Fearless Fred, one of my Scare-Me-Nots, down with me. He wanted to serve and protect us on our slippery way – I imagine because he’s not afraid of anything; he really is aptly named.
Here are some pictures from our adventures today:
First Jonah got his boots and coat off, and jumped on daddy’s bed. When he’d calmed down enough to sit, I brought in Fearless Fred.
I handed him to Jonah. Jonah pulled Fearless Fred’s face in to his own and gave him kisses!
Jonah and Fearless Fred, making friends…
Then it was — you guessed it –bath time!
…and more fun with Fearless Fred
Then lunchtime. (Fearless Fred tries hard to look busy while stealing a wedge of orange with his tail).
Jonah wanted to take Fearless Fred on our snowy walk.
Then Jonah and Daddy started to run ahead, but Fearless Fred didn’t mind so much. He wanted to play in the snow,
and hang from branches…
and climb twisty vine-embraced trees.
Show off!
I love my boy so much. I just want to turn the heated blanket up and crawl into bed. I have all my adopted Scare-Me-Not “kids” to tend to (only someone as kooky as I could pretend to believe that I mother plush monsters).
No, there is work to do. And I’m fighting the urge to completely abandon reason, geek out, and send a care package to Guster.
Then again, there’s always tomorrow.
So anyway once again I ask you to make Fearless Fred and his friends go viral by LIKING the Scare-Me-Nots’ facebook page. I am the cartoon Mommy cyclops monster with dual-lensed glasses, who administers the page and occasionally holds contests with cool prizes.
Should I organize a Scare-Me-Not flash mob?
Posted in Anderson School, autism, hospital, The Anderson School for Autism, Uncategorized, tagged Frances Hodgson Burnett, hospital, Pa, St. Francis de Sales, Susan Sowerby, swings, The Secret Garden, wringer on September 12, 2011| 4 Comments »
On Sunday, the 10th anniversary of 911, my dad and I drove down to visit Jonah.
Ten years ago, September 11th was a Tuesday. I worked part time for St. Francis de Sales Church and I was pregnant with Boo. I had just started feeling him move around inside me – a tiny, timid mouse nibbling at my insides. Wow. I’d been so excited the day I learned I was pregnant – June 14th, 2001.
Then, just 3 months later, September 11th. As I learned of one catastrophe after the next, everything went into slow motion. All action ground to a halt. Like everyone else, I was in shock. I felt grief and anger, terror and outrage. I felt the eerie silence of the skies when all commercial planes were grounded. And when planes did begin to fly again, nobody could look at them without remembering 911.
What shitty timing we have, bringing a baby into this brave new world of terror & fear, I thought.
As it turned out, growing a baby inside me and taking care of that teeny baby gave me hope again. Of course, after 911, things were never the same. But I’d hold Jonah in my arms and wish a mother’s wish: maybe he’ll be the one to change the world.
On the drive down to visit him yesterday, I asked my father all about politics and presidents. My dad’s a history buff and I like listening to his perspective, especially about things and people who made history happen before I was born. My dad’s got quite the objective viewpoint, lending his ear to Bill O’ Reilly and Michael Moore alike before forming an opinion. So I listened, and we talked, and it rained, and I thought oh shit, we’re not going to even be able to take Jonah to the playground – but we were lucky. It stopped raining and by the time we got to the school, the ground was dry. At first Jonah backed off, but then walked toward us, asking car ride? I told him we were going to the playground instead.
He was a good boy, little Boo. He and my dad (Jonah calls him Pa) went on the swings.
Already, Jonah has a favorite swing and goes to it every time.
Jonah laughed and sailed through the air, asking mama push?
I pushed him and pushed him. On and on he sailed on his chosen swing. Back home he was never all that interested in swings. I watched him and wondered why, and I pushed him, and he let Pa push him, and I pushed him some more until it felt like a workout (which is lame, I know). Then we walked up to the visitor’s center, where we gave yummy grapes and contraband black soda to a joyful Jonah.
Oh yeah!
In Francis Hodgson Burnett’s book The Secret Garden, wise Susan Sowerby says, “the two worst things that can happen to a child are to always get what he wants, or to never get it.” So he gets his black soda once in a while.
After our impromptu picnic we walked down to the pond and back up to the swings. “Who’s that?” I asked Jonah, pointing to my dad.
“Pa,” he said in his small, sweet voice, smiling. He was good, little Boo, if a little hesitant. We brought him back to the visitor’s center where he used the potty like a pro, and back again to his beloved friend, Swing. But eventually it was time to go. I prayed he’d let us go without a care, which I knew was a longshot at best. Of course Jonah panicked. Home? he cried. Home?
I told him daddy was coming later (he was, thank God) and both my dad and I kissed him goodbye, but when a care worker started to guide him toward the house, he bolted after me and clung to my side, wailing. Twice more we got him back to his house and twice more he squirmed away, running fast after us, now openly crying. Oh, sweetheart, I told him. It’s okay. Snack is soon, and daddy’s coming.
Finally he was inside his house, and my father and I walked away faster, not looking back. Faster.
I’m grateful my dad let me weep and feel sorry for myself for as long as I needed. He took a slower route home – hurting more than I know he let on.
I spent the rest of the night unpacking and putting clothes away in a sad daze, and when I fell asleep I had foggy, uncomfortable dreams.
This morning I wanted to turn over and go back to sleep, but I knew I couldn’t. If you lose a Monday in my job, it makes Tuesday ridiculously hard.
Mid-morning my cell phone rang; it was the nurse at Jonah’s school. She told me Jonah was okay, but he was taken by ambulance to the hospital because he had a bump on his head and then he threw up, and they wanted to make sure he didn’t have a head injury. Then, not 15 minutes later, she calls again to tell me he’s being transferred to a larger hospital in Poughkeepsie. At this point I really started to worry. I’m glad they were over-cautious but the two-hospital gig was unnerving.
Andy went to see him and turns out he was okay – they think he maybe had an allergic reaction to mosquito bites. (He did have 4 or 5 bites on his forehead when I visited him with my dad). They brought him back to his house and he rested for a while.
So for a few hours today I was trying not to panic, but inside I was terrified. Heart through the wringer, two days in a row.
When I called his house around 8pm to see how the rest of his day was, they assured me he was fine. He played on his scooter, ate well, and went to bed just a little early. I called Andy and my mom to relay this latest news.
Now I’m sitting in a rocking chair and half-watching All in the Family as I type. I’m breathing deep, in and out, smiling over at cat Almanzo on his scratching-post perch:
His paws make a heart when he puts them together, sweet thing…
…and dog Jack is hanging out looking cute:
M and I are both typing. I’m thinking of Boo, grateful he is okay.
There are boxes and bags everywhere, but we’re ignoring that because we feel like it. I’m exhausted and I’m writing like it. I’d like a day where not much of anything happens.
The Never Normal 