Relativity

Reminiscent of so many other times, we parked the car down the road and started walking toward my brother-in-law’s house at the end of a cul de sac in a quiet residential neighborhood. Only this time as we walked toward the crowded driveway we heard a loud oomph-a-oomph-a.

“Is that a tuba?” I asked my husband. “Did they get a band, or is somebody just practicing?”

He shrugged and seemed to indicate the latter was of greater possibility.

As we walked in the front door we realized it was a band, a family of four, with the father as lead singer, his daughter somberly plucking a bass, an older son holding rhythm on a sousaphone, and the youngest, a boy of around 12, stretching and compressing an accordion while wailing along with his dad. They were joyful and loud. We later found out that the police had already been called by a number of close-set neighbors, and my brother-in-law had been warned to wrap it up by ten.

We congratulated the pair on their anniversary and made our rounds shaking hands and saying hello before sitting down at one of the many tables set up under undulating blue plastic tarps. I looked around. The San Antonio riverwalk had nothing on this festive backyard arrangement. Fluttering under the tarps were paper picado banners, not the plastic kind, but actual tissue paper, cut and strung crisscross across the yard. They spoke of love and attention to detail. The tables were festooned with colorful plastic tablecloths, and each table held a Corona bottle vase graced with a single bright flower.

We weren’t allowed to sit long before being ushered to the lean-to shed, where a man was expertly assembling street tacos. The smells of carne asada and pork al pastor made me remember why I could never become a vegetarian. I demurely ordered one of each of these, and my husband eagerly grabbed a plateful of strange looking tripe tacos. We piled the tacos with fixings of fragrant cilantro, homemade salsa, onions, lime, and then topped the whole plate off with a pile of cactus salad and went back to our seats. I would later go back with gusto for more. I’m a sucker for street tacos.

I set about taking Snapchat pictures to send to my eldest two who now live far from home as if to say, remember this? Remember your heritage? I snapped a picture of my mother-in-law, now in her mid-eighties. We lost my father-in-law a couple of years ago; we try not to take this time for granted. There was a slew of back and forth salutations with lots of love and hugs and well-wishes, but all over the distance that technology provides, a sanitized version of connection, life through a lens. I sent snaps of food and videos of dancing, a framework that made up much of their extended family experiences.

A few people asked where our other kids were. They got our standard answer, “Oh, they don’t want to hang out with us anymore.” In reality, one was off at a wedding at his girlfriend’s house. He had promised her mom he would help set up. The other had run off with his friends for the day. My husband hadn’t given me much of a heads-up about this party, otherwise I would have made sure they were there. Still, our answer stands. The older teens don’t want to have much to do with us anymore. Maybe it’s normal. Maybe.

My husband went off to talk to someone. I watched him gesticulating animatedly from across the yard. I saw that the man he was talking to was leaning in, so it must not have been about work this time. I sat with my mother-in-law in the silence that loud music brings. Conversation in my native language would have been hard; lip-reading in Spanish was nearly impossible. So I observed.

My youngest brother-in-law was twirling his girlfriend around the patio. They would come back sweaty only to hop up again immediately as the band started up with another favorite dance tune. I had picked the only brother out of nine who didn’t like to dance.

An older brother-in-law was holding his grandchildren as his wife talked animatedly across the table with her son’s young girlfriend. The son was busy. His seven-year-old niece was looking up at him with starry-eyed devotion as he led her around the dance floor.

I sat and watched the new generation repeating what we once did, tios dancing with their nieces, people laughing and holding babies, the older generation dancing, dancing, dancing. I thought back to a Christmas party long ago, of my brother-in-law twirling my daughter, then five, around and around the small kitchen. I felt time telescoping in with a crushing sensation and all of a sudden I was squinting back tears as I felt the all-encompassing lonliness of endings, of time past, of the things I held so dear slipping through my fingers. I bit my cheek. Hard. And again. It wouldn’t do to cry right now.

All of a sudden I felt my husband at my side again. He was cracking a lame joke, looking into my face, drawing me out of the abyss. I smiled and went willingly.

We chatted with his mom and brothers and ate cake during the band’s break. My mother-in-law tried to separate her youngest from his beloved beer. My teetotaler husband once again proclaimed his status as the perfect child, while his brother looked at me and said, “He has his vices.”

I nodded.

“Work. Work is his vice.”

I know.

The band started up again. It was 9:45.

“Are you ready to go?” my husband asked. “I don’t want to be here if and when the police show up again.”

I laughed. “I’m ready,” I said.

We rode home in silence, my ears ringing with the residual oomph-a of sousaphone and my heart pinging with the loneliness of solitude.

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Transitions

Brown eyes watch my stillness
As an ember glows brightly,
Fanned by the winds of change,
Fed by laughter and footfalls echoing through time
Off photo-plastered walls,
Into a blaze that threatens to engulf.

I am fueled by the fire within.

Photographs of frozen moments
Stand in for warm bear hugs and childish grins.
The jangle of a telephone subdues the flame, and time ticks off
Seconds, minutes, hours in a life of waiting.
Then again, silence – nothing but expectant thumping
Of a dog tail on hardwood floor.

I am fueled by the fire within.

Resigned to fate, I pull on my running shoes.
This race isn’t over yet.
“Ready, girl?” I ask both of us.
The thumping intensifies, a beating drum of anticipation.
I cup a burning ember in hardened hands and place it in my soul.
“Let’s go.”

I am fueled by the fire within.

The Call that Changed My World

I took the call in my bedroom. I had been waiting to hear back from the doctor, and my nerves had been taut since my appointment. I had had an inconclusive mammogram, followed by another, then a biopsy, and then an interminable wait for results.

My kids and their friends were playing in the living room just outside the bedroom door, kids whose lives were full of pretend play and drawing and crafts, kids who didn’t ever hear the C word.

I tried to calm myself. The doctor had assured me that this was routine, that second mammograms were sometimes required, and biopsies often came out fine. This is what I told myself while I waited.

I thought back to the biopsy I had had ten years ago. The doctor had found a lump and wanted to check it out. I delayed. Women my age didn’t get cancer. I finally came around and had the biopsy. It was benign and I was relieved. At that time I had been 30. Now I was 40. Surely it was another false alarm. I tried to calm myself.

The precursor to this call had been my most recent checkup, which just happened to be on my birthday. I had mentioned to the doctor that I was feeling some discomfort under my left arm and that I felt a lump there. He thought it would be a good idea to get it checked out and ordered a mammogram. Happy birthday to me.

It wasn’t my first mammogram. I’d had one with the previous scare. It turns out it was lucky I’d had one, because the fact that they had this to compare it to made a small, four millimeter dot stand out. It was probably a little like finding Pluto, just a little less celebratory. And it wasn’t even where I’d found the lump. It was in the other breast, hidden away where it could have just grown and grown, unbeknownst to me. But it didn’t grow. I was one of the lucky ones.

The doctor gave me the news that it was cancer over the phone as I stood alone in my bedroom, the kids playing happily in the next room. The tears came. How would I tell my husband? My parents? I allowed myself tears for mere minutes before I pulled myself together, at least temporarily, for the sake of the kids. It turns out my tears and I would become old friends.

The days and weeks that followed became a blur of doctors visits and pamphlets, assurances that I had time to make decisions and guidance not to wait too long. Get it out. Get it all out, I thought, but the doctor assured me that a lumpectomy would be enough. They advise against bilateral mastectomies these days.

I asked the big question everyone asks in this situation. Why me? I had led a good life. I didn’t drink, really. I tried to eat healthy and exercise. So why me? Breast cancer is something that happened to older women. Here I was, a forty year old mother of four young kids. This wasn’t supposed to happen.

I brought this up to the oncologist one day and asked about the possibility of genetic testing. He said he would check. I waited, and waited, and waited. The year was coming to a close. It had been a doozy, with doctor’s appointments and surgery and radiation. We were well over our deductible, and the genetics test itself was two thousand dollars. On December 29th the nurse called and asked if I could get to the lab. Insurance had approved the test, and she wanted to slide it in before the new year.

The test came back positive for hereditary breast cancer. My ordeal would not be over yet. This increased my risk of recurrence to eighty percent.I worried about my daughter, my sister, my mom, and all of the other women in my family who might share the gene. The results also meant I was at high risk for ovarian cancer. We had more discussions with more doctors, a genetics counselor, and a plastic surgeon. That bilateral mastectomy that I had been advised against was back on the table. We talked about risks. The plastic surgeon said he would go to Vegas with my odds. My breasts and ovaries were ticking time bombs.

I watched Italy win the World Cup as I recovered from a hysterectomy/oopherectomy, and my kids got to experience their mom going through rapid onset menopause. I was 42.

I got my mastectomy between stints of student teaching. I was 43.

My kids were mostly too young to understand. My eldest was an eighth grader who was scheduled to go to D.C. in a month. I worried that I’d mess up his plans. My daughter was in fifth grade. She was old enough to know why I was going into surgery and in her worried state would cling to me for years after. My younger boys were both too little to know, so we kept it from them until fairly recently.

At some point soon after that first fateful phone call, I remember distinctly being at the park with my kids. That day I watched my family as if from a distance and saw myself out of the picture. I was overwhelmed with sadness and the need to be there for them, to watch them grow up, to graduate, to get married, to have children of their own. For the first time in my life the possibility of not being around for that clung to me like an octopus.

I knew in that moment that I would do whatever it took to survive.

It will be twelve years this March.

Connection


Photo credit: hepingting via Foter.com / CC BY-SA

They occupy a corner classroom in a regular elementary school, a rag-tag group of special needs kids. Their numbers are few, but the classroom feels full – full of life, full of toys, and full of noise. Each student has an assistant, and they switch around throughout the day, helping with learning goals, sensory experiences, meals, and restroom breaks. It’s a room of diverse needs, with everyone yearning for connection.

I have been returning here since the first day I hesitantly stepped in as a sub for a teacher friend. That day I was nervous. I had not spent much time around special needs people, and I knew that some in the class, when overcome with frustration, would resort to biting. I reluctantly went, but held back and watched the assistants work their magic with these kids. Since then, I’ve discovered it’s one of my favorite classrooms.

To the outside eye, the atmosphere can occasionally seem chaotic. Special needs kids don’t often vocalize their frustration the same way we do. They may scream. They may bang their heads. They may bite and hit. They may jump up and down, waving hands. They may run away. To the outside eye, it can be very frightening.

When you spend time with these kids, however, you begin to understand the frustrations. To some kids the mere mention of a fire drill sends them into a panic as they remember the loud noises and masses of student bodies exiting the building. Earmuffs are scattered throughout the room for those occasions where screaming alarms or screaming children threaten a young student with sensory overload.

Some brains can become stuck on repeat with the desire for one particular item drowning out all other stimuli.  It’s like a record that’s skipping, and sometimes no amount of redirection can budge that needle. Pressure builds and builds in the child until he breaks down and the adults in the room converge to keep things safe and console him. It’s tough being a kid sometimes in the best of circumstances. It’s tougher when you can’t make your needs known or understand why they can’t be met.

To not be able to express what’s wrong must be very frustrating. It may seem that these kids are volatile and explosive, but when you get to know them,.you can see the signs of frustration building. Body language changes. Eyes may narrow. They may start to make growling noises. The pencil that was tracing letters starts tapping, then pounding. Assistants pull out the visual reminder of emotional levels 1, 2, and 3, with green calm and angry red. Before things blow up, they begin soothing reminders to have a calm body and calm voice, then pull out icons and ask them to use their “words.” Sometimes this works, sometimes it doesn’t, but the communication is important. Everyone gets frustrated and angry, and expressing these emotions appropriately is difficult for all of us. Sometimes just having someone understand that you are angry and you know it is enough. We all desire calm, even the kids.

Because I sub all over the building, I know how some of the other students react to the outbursts. Many shy away from these kids. They make comments when the screaming and banging start. They don’t understand, though I’m always quick to point out that we all have things we’re dealing with in life.

A couple of student ambassadors have ventured into the classroom. Often these are troubled kids who need an outlet. They are often the kindest, most understanding helpers, and they are quick to build trust and rapport. The special needs kids light up when they make an appearance, and they play and make attempts at communication before the students have to return to class and things go on as before. But these are new friends who stop and say hi in the long and lonely hallways.

screen322x572I have been in the classroom many times now. I know the kids. I know where they started and what incredible gains they’ve made. The child who wouldn’t speak to anyone, who yelled and screamed, now says hello to me in the hall and greets others in his classroom with a good morning. He still occasionally falls apart, but it’s the exception, not the rule. The child who once clung tightly to objects is now able to pass things out to his classmates. The girl who started out kicking and screaming can use an app on her thickly padded iPad to communicate her needs. She pushes the icons, the machine does the speaking, and she looks expectantly for a response. It’s magical. Trust exists here, and that’s a truly fertile ground for growth.

I sat with a student just the other day. He loves the iPad, knows how to work it, and would often get sidetracked from lesson apps to video clips. Removing him from the gadget used to be a battle. The other day he picked up another student’s iPad, one used for communication, with the intention of getting on YouTube. I explained that this belonged to someone else and started telling him how it was used to communicate. He was calm. He was listening. He pushed button after button, exploring her communication program. He didn’t once try to exit out and turn on YouTube videos, as he has been known to do. The owner of the iPad shifted position. She was happily playing on the floor, but now with an ear tuned to what we were doing. A subtle energy radiated; a tenuous connection had been established.

If you’re quiet and listen, you can hear what these kids are telling you, even if they don’t say a word. If you’re really lucky, they will include you in their world.

This corner classroom, this overlooked part of the school, has amazing things happening in it. What is the corner classroom in your life?


Disclaimer: I am not an expert in special needs. I don’t really have much more experience with these challenges than in the few classrooms I’ve been in. I don’t know what it’s like to parent a child with special needs. After working with these kids, I feel the need to share my own experiences in the hope that it will prompt people to be more understanding toward kids with special needs.

Written in response to the Daily Post’s one word prompt: Connection

House of Cards

Cool tears assuage the pain as though my feet
Have stumbled over shards of glass so fine
That you contrived to throw where we might meet,
And in your tantrum bold have drawn a line.

Your viewpoint is confirmed, my dear, not mine,
For I believe concession is an art.
In meeting of the minds we may align
To face the future tethered at the heart.

The fragile bonds of trust may tear apart
When scornful words are cast about at will.
In your defense you say we’ve pulled apart
While in my heart I know I love you still,

And wish with all my soul you’d sweep those shards
Of stubbornness and fix this house of cards.