Thursday, June 28, 2012

Regular Kids

Masha is going to summer day camp for two weeks. And while her session is for kids with special needs, she does have to ride the big school bus there and back, and I was chastised by someone fairly high up in on school district’s special education committee as she insisted that I must have been “quite forceful” with the camp administrator to get her in because after all, ordinary kid things are “a danger to Masha”.

My two sons are also attending adventure camp and so they can watch out for Masha on the bus. (Although I am not sure how well this is working out since they both announced on their way down the bus steps today that, “Masha really needs a spanking. She was so naughty on the bus.” The bus driver sheepishly confirmed that yes, Masha was standing up on the seat. Ugh.)

Because it was insinuated that Masha is not “high-functioning” enough for this camp, I was very curious about the other kids in the special needs section. What needs do they have and what makes them special? I decided to tactfully get this information from my older son. Below is our conversation.

I started, “Soooo, Gecko, when you see Masha get off and on the bus for her camp, do you see the other kids too?”
“Yeah, they are there too.”
“Are there a lot of kids with her?” I continue.
“I don’t see her whole group. There are like ten kids with her though, not counting Masha.”
“hmm.” I spring the big question. “What are they like?”
Without hesitation he answers, “They are regular kids, just like her.”
Conversation over.

And that my friends is the beauty of true integration. My son does not see a disability. He does not see atypical facial features. He doesn’t see stereotypes. He simply sees Masha, and a bunch of other regular kids.

regularkids

Next Fall Masha will begin Kindergarten in a regular classroom with ordinary peers from our neighborhood. We pushed the district hard to make this happen for her (even though it is her legal right). We stood her ground because the more time Masha spends with typical peers the more they will see her, not her extra chromosome. And when the focus on the disability disappears, the doors of life will be wide open for Masha and all the other regular kids.

Monday, June 25, 2012

Four Years

k_born

Guess who turns four today?

The Cobra.

The Master of Disaster.

The Princess.

Kimzilla.

My Crazy Monkey.

My Jumpin’ Bean.

The Queen of my Heart, Kimani Rain.

 k_atfour

Friday, June 22, 2012

The End of Kindergarten

Today is the last day of school. That means it is the last day of Kindergarten for Jade. There isn’t much profound to say about this except that it didn’t make me sad like I expected it to. It simply reminded me that time passes too quickly.

 Here is what Day One looked like

first_day

Kindergarten Reflections Interview
What was the best thing that happened in Kindergarten?
Jade: When we had the chicks and I got to hold one.

Who was your favorite person?
Jade: Anna... who is going to a different school (big sad face).

Best school lunch?
Jade: Hotdogs. And the kiwi that I fell in love with. The kiwi is the best. The hotdog is second. Wait... hotdogs and kiwis, that’s the best lunch.

Best time of the day?
Jade: Outdoor recess!

What is the most important thing you learned in Kindergarten?
Jade: I know what 10 plus 9 is.
Mom: What is it?
Jade: Um, let me think. 19! It is 19! because 20 minus 1 is.
Mom: That’s how you figured it out?
Jade: Yup.

Any advice for a little kid going into Kindergarten next year?
Jade: Yeah, keep your hands to yourself. And I would tell them to walk inside the white lines so that they would be ready and know everything.

And this was today...

last_day

Wednesday, May 30, 2012

Heartbreak #4829

The school psychologist has a voice like a child. She sounds much too young to be telling me that the classroom teacher has asked her to do an assessment of Kimani’s mouthing behaviors so that a formal plan of action can be created to discourage such things as eating the wood chips on the playground.

It never ends... the things that don’t happen for her as they are supposed to. These things, they jump out like a springing puppet in an old-fashioned jack-in-the-box. The twisted metal handle with the wooden knob is always turning, the song of simple notes is always playing... always, always, always... and then BOING! Heartbreak #4829. (But really, who's counting?)

core

She is not delayed. She is detoured. She will not be coming back around this way. She tromps on delicate feet into uncharted territory. Her tiny fists are balled up. If you were to pry them open, you would find the hearts of her parents, crushed, one in each hand.

Wednesday, May 23, 2012

Reclaiming the Forest in Me

This week, one of my Artist Way tasks was to take a walk. Simple enough, eh? Oh yeah, and I am supposed to write a list of affirmations so I figured I would mulitask by saying positive things to myself as I walked. I did not choose to walk on my quiet dead-end street. Instead I suited up—to thwart the ticks—with white socks pulled over pant legs, old sneakers, and a long white tank shirt, and headed for the woods out back.
pineAs a child I played almost everyday in the woods that surrounded our home. I was an Indian who had a bent stick tied with string for a bow and skinny straight sticks bundled together for arrows. I led imaginary hunting parties all through those acres of forest and creek. We caught crayfish, snuck up on deer and squirrels, and fought encroaching white men. If I close my eyes I can still see each rise and fall of the forest carpet that lay next to the creek. Plush browned pine needles, years and years worth, made the path soft under my bare feet. I know where all the good stepping rocks are as far up and down that lazy bubbling creek as my territory goes. I know where there are skeletons of animals, trees, and even a mill from yesteryear. That forest is etched into my being... (I am a beautiful Eastern White Pine tree that sprouted in its shadow so many moons ago.)

The woods I enter today I am not known to. As long as we have lived here, I have never ventured back beyond our land line. It doesn’t look like the forest I grew up in. The trees are mainly tall oaks and the floor is wet with rain water that has nowhere to go and suffers a swampy existence beneath dead scalloped leaves and rotted acorn tops hidden deceptively under the Trillium and Fern that are rampant here. After wandering twenty yards or so beyond what’s mine, I am stymied and cannot see a clear path to follow. (I am brave and will go forward regardless of the obstacles.)

oak_forest
A vision of my inner self floats out over the green blanket which is also floating, a foot or so above the muck. “I am inside myself,” I think. I can see that there is a small brown knoll of pine forest across the fifty yards of skunk cabbage that indicates there is standing water out there. I have no galoshes, thus I cannot cross. Just like my writing mind... I can see the story on the other side but I am not equipped to cross the bog of my brain to get there. I am stuck creatively and I am stuck in real life at the edge of a swamp. Many great oaks have fallen here, unable to withstand the mire. (But I am a pine tree, strong and flexible.)

 berryI carry on in my efforts. Invisible and impossibly long spider web trails connect one baby oak to another, tearing and sticking to my arms and face as I pass through. One single bright red berry on the ground calls to me... an offering of hope from a tiny plant that seems barely able to hold it up. There is a long downed oak that runs far out into the expanse of giant bulging green leaves. Perhaps it can serve as a bridge. Its dark slippery bark is still soaked from days of heavy spring rains. Ten or so steps along it I realize that I do not have the balance I took for granted thirty years ago and there is no choice but to turn back. Headed toward home, I veer off to try one more way that might take me around the deeper areas. It leads to a tree that succumbed to an ice storm last winter, its roots reaching absurdly toward the sky. (I, too, will reach toward the sky.)

rootsI remember thinking when that tree fell I would take my boys on a little hike to see it after the winter passed. There could be a squirrel's nest in it—like the one I found in a fallen tree when I was a little girl—or maybe a large bird nest... that of an owl or a hawk. Today I could not even get around it’s roots without stepping in a gloppy mess, so I opted to wait for a drier period... maybe the high heat of summertime. (I am a talented writer and my time will come.)

irisThat was it. From there I headed into my neighbor’s backyard, enjoying the flowers of the season all the way home. Perhaps there should be some disappointment for not making it over to explore the other side of the woods but I don’t feel that. I simply feel a powerful urge to buy a pair of knee high water boots. (I will do what it takes to live my dream.)

Tuesday, May 15, 2012

Creative Aspirations

I like to think that I am creative and that I have some talent as a writer. (I think I am funny too, although you’d never know it from reading my blog.) For as long and as far back as my memory goes, there is an immutable urge to write something good.

For a while I worked on an adventurous tale of deception, desire, and magic set in 14th century Romania and France (though France wasn’t France back then.) The story was born on my couch just before I started grad school. After a minor surgery, I was stuck there on that couch recuperating for days. Once I ran out of magazines to read, bingo lottery scratch off tickets to scrape, and movies I’d rented... there was nothing left to do but watch t.v. Very late on one of those confinement nights, a movie started and it looked like it was going to be good... there was real potential bubbling in that cauldron and then it turned out to be The Beastmaster or something or other like that, and I was disappointed. So I asked myself, “What story would you have wanted to hear?” I scribbled the answer down in a green spiral notebook and that became my project for a time.

I never finished writing that story. Life got in the way... grad school, a husband, a bunch of kids, and then I changed. Once that happened, a magical story didn’t seem appropriate anymore.

But now that I am bored out of my mind cleaning up poop, cooking dinner, washing clothes, and reading A Mother for Chocofor the zillionth time... I find myself percolating with an itch to write. It isn’t that simple though... I mean, I can’t just sit down and do it... I feel like I need some foreplay or something.

As all this was going ‘round in my brain, I stumbled on a FB post by LL Barkat referencing an invitation to participate in a virtual book club experience where the selection is Julia Cameron’s The Artist's Way. I have that book. It was a gift from my Artist Aunt. I remember really liking the idea of the book way back when but never actually doing more than one or two of the “tasks.” I ran out to the garage and dug through five or so plastic bins of books until I located it. I am ready.

Next Wednesday I will begin a journey to “recover my creativity from a variety of blocks, including limited beliefs, fear, self-sabotage, jealousy, guilt, addictions, and other inhibiting forces, replacing them with artistic confidence and productivity.” Ok, my dear aspiring writer friends... do any of those blocks apply to you? Want to join the quest to “connect your creativity with the creative energies of the universe”? If so, check The Artist’s Way out of your local library or buy yourself a copyand meet me over at the Tweetspeak Poetry blog on May 23rd.

Monday, April 23, 2012

The Day I Dreaded

When the phone rang at 11:07 a.m. and the caller ID flashed “Private” on the screen, I was not surprised to hear the pediatrician’s voice saying hello. I had just been on the phone with her office to ask for vaccination info for camp forms. So although a call directly from the doctor herself was not necessary, it was not alarming.

“Hi there,” she said softly, “I need to talk to you about Masha’s lab results.”

Instantly I felt sick to my stomach and braced myself to hear her say that the CBC was bad and Masha has Leukemia.

“Remember I ordered an HIV screen because she is adopted? It came back positive.”

She continued on... explaining antibodies tests and actual virus tests... Masha’s blood had failed the virus test even though the antibody test came back negative. Could I take her into the hospital for further testing... here is the phone number... they have her records and they are waiting for her. My composure stayed steady on the phone as my brain repeated over and over, “It’s not a death sentence anymore, it’s not a death sentence anymore, it’s not a death sentence anymore.”

As an eighties girl, I was wide awake when AIDS made its public debut. Within a couple years the disease traveled from the drug and homosexual male communities into dentists’ offices and blood transfusions. We were all appropriately terrified of the mysterious disease that had no cure and eventually ended in death. Those who had AIDS or its precursor HIV became pariahs.

Before we hung up, our pediatrician gave me one small drop of hope in the words, false positive. Maybe, just maybe, this was all a big mistake. I pushed the call disconnect button and burst into tears.

It is doubtful my husband understood much of what I sobbed into his ear but the HIV part got through to him and he was home with me within a half hour. Together we cried and wondered how on earth this could be possible. She came from a wealthy family who had other children before and after her, so it is doubtful it was transferred to her perinatally. She had never been in surgery so a transfusion was unlikely. What other possibility was there... bad vaccination practices at the orphanage?

Jumbled. That is how the thoughts come in times like this. I remembered a bad bite on Masha’s back last year... the dental indentations had looked suspiciously like Kimani’s mouthful of teeth and now I worried if HIV could be transmitted through a human bite. Maybe it wasn’t Kimani who bit her... maybe I would have to tell the school and they would tell the other parents... and as if Down syndrome were not enough to get in the way of her up-and-coming social life, surely HIV would be. Who in their right mind invites Typhoid Mary to their kid’s birthday party? Kimani had meningitis, Masha has HIV, and what’s on the agenda for Autumn... Leukemia? WTF? This is why I avoided getting their labs done... this is the day I dreaded. The enemy I can’t see is the one who has had the most power to destroy my babies.

My best friend was at my house in a matter of moments after my call to her. She would babysit for us so that when Masha came home from school, her father and I could whisk her off to the hospital to meet with the infectious disease specialist. Putting her in her carseat I started crying all over again... she just seems so strong and healthy... She asked me if I was hurt and she leaned in to kiss me. It is ok to kiss her I reminded myself... HIV is not a booger disease and a little bit of runny nose or wet lips was not going to make me get it. Oh my god, I don’t want to be afraid to love on my daughter.

 masha1

The little old lady “bug” doctor, the same one who hovered over Kimani in PICU trying to pinpoint the force that was sickening her week after week, walked into the room and said, “Well hello. I know you but who is this little one?” Introductions and explanations were made and then she reviewed Masha’s translated medical record. There it was. Anemia. The doctor explained that in some countries blood transfusions are given to anemic children.

The needle jumped up a notch... this whole time bits and pieces of information pushed the line of fear up or down on the graph in my heart. The doctor explained all of the tests given for HIV, and that there are two different strains and that Masha had actually not yet been tested for the virus itself (the needle dropped down a notch). In fact they would be drawing blood to do that test right after our meeting. The results would take a week and she herself would call us to deliver them. She took my hands in her cool, bumpy grandmotherish hands and looked me in the eyes. “Deep in my heart I think this could be a false-positive but if it is not, you must remember that it is not the end of the world for her. This is a chronic disease and we can treat it.” I felt my cheek muscle tense up and wiggle but I did not cry. I held on to those two words that might possibly erase this whole thing... false positive.

For the next couple of days I couldn’t help but remember how I'd had a similar bit of hope while pregnant with Kimani. They didn’t know for sure if she had Down syndrome, and I had held fast to the word “maybe.” And then there was the hope that the meningitis had not caused brain damage...

On Friday, Dr. L. called with the good news that Masha is fine. Her specialized blood test for the Human Immunodeficiency virus was negative. This chapter has a happy ending.