"every journey is more fun if you can laugh along the way..."

There is A Light That Never Goes Out

Posted by on May 12, 2018 | 0 comments

There is A Light That Never Goes Out

I was fifteen years old when Meagan was born.

At the time, she was just another cousin, one of ten (plus a niece and two nephews) who came one after the other, in rapid succession, over a few short years. Several more cousins followed later, but the mid-1980’s was our family’s baby boom. Meagan, another cousin, and my first niece were born just months apart in 1984-85.

My mother was the oldest of four girls by eleven years, so I was twelve when the first cousin made her entrance. I went from two brothers to a whole lot of little girls (and a couple of boys) in an instant. I loved it. I loved them all. Every single one of them.

Family get-togethers took place at my grandparents’ home in Indianapolis. Thanksgiving, Christmas, Mother’s Day, Indy 500 Day… upwards of 40-50 people would show up to celebrate, eat, and just be together.

Family. A wonderful, loving, huge family.

My mother was the only daughter to leave Indianapolis. She, my father, and my eldest brother moved to Michigan, just before I was born. My big family lived close to each other, something I never had. When other kids went to Florida on spring break, we went to Indianapolis. And I loved it. I couldn’t get enough of my aunts and uncles and brother and sister-in-law and nieces and nephews. And cousins. So many cousins. I reveled in every year of their lives and loved watching them grow into individuals.

They talked to me. They told me things they couldn’t/wouldn’t tell their parents. I was the cool older cousin who they could confide in and would call them on their shit when they were being idiots.

I thought of them more as nieces and nephews than cousins, because I was so much older. I still do.

I used to stay with Meagan’s parents, my aunt and uncle, on their property south of Indianapolis. They let me smoke. They were cool. Their kids were cool. he rest of my family was cool in their own ways, but this family and I jibed, really well. They’re my speed. They got me.

The children had the run of a forest, and took full advantage. Meagan had the spark of adventure from early on, a pure blend of her older sister and brother. She was her own person.

When I graduated from college, I moved from Michigan to Georgia, and only saw my family once or twice a year. Meagan actually came to visit me once there (mostly for a place to stay while she and her friend went to some concerts).

She was nineteen.

Twelve years after I left Michigan, I moved to Los Angeles, and saw them even less. And then, in 2010, my young family and I moved to British Columbia.

The last time I went home to Indianapolis was April of 2009. Meagan wasn’t there; she had moved to Austin, TX.

We’re planning a trip home in August for a family reunion. I had hoped she and her husband would make the trip as well.

A curious thing about my family: my mother moved away from the homestead, but my two brothers moved back (one a couple of hours away, but still Indiana). Everyone else stayed close. Except four of us. One child from each sister’s family moved away: me, a cousin who moved to LA before I did, a cousin who is now in Pennsylvania, and Meagan, who went from Austin to Seattle.

Over the years, I’ve seen a few family members who have ventured West. Mostly those coming out to visit Meagan or my oldest nephew, who had also moved to Seattle around the same time we came north.

Two years ago, I took my four boys down just across the border into Washington, for a picnic at my (second) cousin’s house. Meagan would be there with her mom and stepdad, my aunt and uncle, who had come to visit.

I was beside myself. It had been seven years since I’d seen any of them, and I was craving family time in a desperate way.

I pulled into the drive, and barely got the door open before Meagan was dragging me out of the van, yelling “WENDY! I LOVE YOU!!” She gave me one of the biggest hugs of my life. It felt like home.

My cousins and I all look pretty much alike. It’s obvious we’re related. My aunt looks like my mother, who passed in 2000. Sitting there with them, I was home, if only for an afternoon.

Over the following months, Meagan and I talked more, and, last summer, we finally got a chance to hang out and talk and just be together for a few hours.

Home.

She took me to her restaurant and proudly announced to anyone who would listen, “this is WENDY!! She’s my COUSIN!!”

She also picked up my son from SeaTac when I couldn’t get down from Vancouver in time.

“How will I know who she is, Mama?”
“She looks like me, baby. You’ll know her.”

And he did.

The three of us went to her restaurant for lunch and laughed and ate too much. I hated leaving.

I texted with her a lot, mostly about when/if we could actually get together. A lot of “I love you’s” on both ends.

If Meagan loved you, you knew it. You felt it down into your soul.

A few weeks ago, my nephew got married in Seattle. My husband and I got a sitter and went down for the weekend alone. I was beside myself with excitement, for so many reasons. I was finally getting to meet my two-year-old grand nephew for the very first time. I was finally getting to see my niece for the first time since 2009. I was seeing my big brother and sister (in-law only as a technicality), her mother, and my younger nephew again. And, I was finally going to meet Meagan’s husband of nine years, Nik.

The weekend did not disappoint.

Friday night we had no plans and the others were getting ready for the morning wedding, so we met up with Meagan for drinks.

Sitting at the busy bar where Nik works (trying to figure out which employee was him), David asked about her. He hadn’t seen her since probably 2006 and didn’t really remember her all that well.

“You’ll know her. She looks like me.”

And he did.

“WENDY!!!” came booming through the bar.

“MEAGGIE MAY!!” I boomed back.

To her husband: “See, she called me Meaggie May! She’s family!”

Nik knew who I was, too.

Meagan and I look so much alike.

We drank and laughed and were loud.

We moved on to the next bar, a Buffalo Wild Wings. The place was pretty empty, but the booze flowed and that was good with us.

We talked about restaurants. Both of us finished college, got real jobs, and quit them in favour of working in bars.

We talked about life. We talked about family.

So much about family. We laughed about her and her siblings as children and my adventures with her parents. We cried about losing my mom. We shared silly stories about our lives together. And we sang songs. Loudly.

Everything we did that night was loud.

I could be loud with Meagan. She got me.

Out of all of my cousins, Meagan got me. We were kindred spirits with no fucks to give.

She accepted me for my loud and crazy and emotional self. It was easy – Meagan, too, was loud and crazy and emotional.

Two peas in a pod.

We sat together at the wedding, had drinks together between the ceremony and brunch, then drank more together at the “after party” that night in Seattle.

When the party was over, we all moved elsewhere. She knew where to go; she knew the people working there.

She was me when I lived in Atlanta, hooked in to the bar scene. I relived a little bit of my rowdy youth (my early 30’s) through her.

The next day we were supposed to meet up again. I had a box of canned goods in my car for them. I can everything in sight; it’s one of the things I love to do nowadays. Every chance I get, I take them food. I feed them. I brought a ton of stuff that weekend.

We got caught up visiting with my brother’s family (and my sweet grand-baby), then had to get home to relieve the sitter. We missed seeing Nik and Meagan one last time.

I’ve been texting with her for a couple of weeks now, trying to figure out where we could meet so I could get the jars to her. We finally decided to meet up in the middle – the beach at Deception Pass – so we could spend the day playing with the kids instead of just handing off a box of canned goods in the parking lot of Target.

The box is still in my van.

Her last text is still on my phone.

She’s gone.

Three days ago (has it been that long?) Meagan passed away suddenly.

We still don’t know why.

But it doesn’t matter.

She’s gone.

She was 33.

The beautiful girl whose diapers I changed when she was a baby, and played with as she grew. The beautiful woman who had become not just family, but my friend.

She was my friend.

She got me.

She loved me.

Meagan had a smile that absolutely radiated. A lot of people say that about smiles, but Meagan’s smile was bigger than life.

She was alive on a level most people only wish for.

She was vibrantly present, and when she was near, you knew it. She focused on people like a laser beam. Her joy of life and love for everyone in it was palpable.

The loss of her is palpable.

The pain is unbearable.

The hole in the world is cavernous.

But I will gather myself together, take the love she gave me, and put it out into the world.

Meagan was the brightest light, and she will shine on through everyone she loved and who loved her.

And every time I see her picture, I will smile.

And be loud.

**********************

Meagan was the breadwinner in her family while Nik finished college. Her coworkers have started a GoFundMe to help him get though this difficult time. If you’d like to contribute, here is the link.

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Be The Village

Posted by on Mar 6, 2018 | 0 comments

Be The Village

Autism parents. Autistic adults.

Two communities that have the same essential goals, but are rarely able to meet on common ground.

One point of contention is the internet, and how autistic people are portrayed.

The latest flame on that fire is a video by Kate Swenson of Finding Cooper’s Voice, wherein she talks about her son Cooper’s nonverbal autism.

Kate’s website, Finding Cooper’s Voice, rose in visibility last year, when her video about an altercation at a special needs playground went viral. Then, in October, Kate and Cooper’s video submission to Jimmy Fallon and Today’s “Everything is Mama” contest took the top prize.

Kate makes a lot of videos about her family, and Cooper, in particular.

Kate’s latest video

This latest video, posted via Today.com, as caught a lot of attention, both good and bad. Parents of nonverbal children understand and sympathize, and a lot of autistic people are very, very upset.

The main concerns I’ve seen are that the video is “ableist,” “exploitative,” and essentially a Mommy Blog pity party.

And they’re right, to a point.

People have been arguing since the invention of the internet whether or not posting videos/photos of their children is acceptable. Some think it’s absolutely abhorrent, while others embrace the platform with abandon.

There is a lot of concern about Cooper’s right to privacy, and future humiliation he may suffer because of his mother’s posts and videos. I, myself, have faced similar scrutiny, particularly when I started this site, eight years ago. I take care not to post anything that disrespects or would embarrass my children, and from what I’ve seen of Kate’s work, she does the same.

My opinion. Yours may vary.

I think the situation here is a little more serious than whether or not Kate is indulging in self-pity at Cooper’s expense.

This is also about more than Cooper’s right to privacy.

This is about his life.

People like to say that special needs parents are “picked” for their children, or that “God never gives them more than they can handle.”

Those are nice tropes, but in reality, parents of special needs children are no different or better or more special than any other parent. Every parent wants the best for their child, and sometimes that journey is a lot harder and full of stress.

A kind of stress you can’t explain to someone not in it.

Even another autistic person.

I am autistic, and I am also a parent. A parent with four children, three of whom have special diagnoses, two of whom are on the spectrum, too.

I understand that to an autistic person, hearing a parent say “horrible things” about their autistic child is “ableist” and offensive.

I also understand, as a parent to autistic children, that hearing a parent describe their reality is hard to hear, but necessary.

This is a cry for help. For her, for her child.

Instead of vilifying her, let’s recognize that and be her village.

Kelly Stapleton was an integral part of the autism blogosphere. She was a bright and shining light, while simultaneously sharing her struggles with her daughter Izzy.

Her life was hard. Really, really hard. And when Kelli thought she had nowhere left to turn, and nobody left to help her family, she made a desperate decision that changed her family’s lives forever.

She tried to kill Izzy, and herself.

Kelli and Izzy

Kelli got to the point where that action seemed like a logical ending to their pain. To her pain.

I am in no way condoning her actions. Not at all.

However, I think we need to learn from them. There has been an epidemic of caregivers taking the lives of their autistic children/wards, most because they can’t find a way out of their world.

The autism world can be one of utter isolation. Family and friends back off; total strangers judge silently.

As autistic adults, we purport to want the very best for our fellow autistics of all ages. It’s time to put some walk to that talk. It’s time to reach across the table with an olive branch and a life jacket.

We simply cannot have it both ways. If we do not reach out and support parents who are desperate and in pain, they may break. Supporting these parents, instead of ridiculing and criticizing them, IS supporting autistic people.

How can we possibly insist on putting the health and welfare of autistic people first, if we are not willing to help their caregivers?

We know best. We are their children, grown up. We know what our parents went through, and it wasn’t always easy. Would you have wished them to suffer in silence, or to reach out for a hand to hold or shoulder to cry on or simply a sympathetic ear?

We can do better. For Cooper. For Izzy. For every autistic child. They need our village.

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Twinkle While You Shake It

Posted by on Dec 6, 2016 | 1 comment

Twinkle While You Shake It

“Twinkle while you shake it.” 
“Ya Gotta Have A Gimmick,” from the musical Gypsy, engraved on my mother’s tombstone

“One never knows, does one?”
Fats Waller, one of my mother’s favourite quotes

 

A few days before my mother died, we went to the grocery store. The Giant Eagle, to be exact. My mother did not have the strength to walk, so we rented a wheelchair. The company providing the chair took their sweet time delivering, and my mother sat in the living room, on the couch, waiting.

She waited while I went to the gym to lift weights. To build my strength, mostly in spirit. My body was already strong from weeks of daily workouts, lifting and pushing and running away from the thing I couldn’t elude. I needed to be strong. I didn’t think I’d ever be strong enough.

She waited, and thought I’d forgotten.

She waited for the wheelchair, and thought they’d forgotten.

She thought we’d all forgotten.

We didn’t, we couldn’t.

Our adventure began at Skyline Chili, an Ohio institution. The food was terrible. She didn’t care. She didn’t even really eat anything, but eating wasn’t the reason she was there.

Then to the Giant Eagle. Like she and I did with her grandmother before, I pushed her up and down every single aisle. But my great-grandmother walked – tiny, frail, and stooped in her old age – and pushed her own cart.

My great-grandmother also lived past 100 years old. “All of the women in our family live really long lives,” we always said. Everyone always said. It was understood. A given.

My mother was 57 years old when I pushed her wheelchair through the Giant Eagle, touching things on shelves, discussing produce. We bought acorn squash.

No one really talked about the fact that 57 is not 100. No one talked about the fact that her parents were still alive. Her father’s brain had begun to succumb to Alzheimer’s, but still, he knew. “You were always the best shopper,” my grandmother said to my mother, on their last visit. Their last time together on Earth.

I watched my grandmother try and reconcile the situation before her. She wrung her hands as she sat next to my mother’s hospital bed, set up in the den. Her daughter’s deathbed. “You were always the best shopper.”

There is no higher praise in my family. My clan of women who take bargain shopping as seriously as some take final exams. My mother was the oldest of four daughters, who mostly had daughters. Except my mother. She had but one daughter, and two sons. The oldest son married his high school sweetheart, so she quickly became indoctrinated into the family obsession. Shopping is serious business. The biggest bargain is worn like a crown, wielded as a trophy.

My mother once bought me an Armani dress for 99% off. $5. We joked about framing the tag and receipt. I wish we had.

My grandmother didn’t know what else to say. I didn’t know what else to say.

My aunts, my mother’s three sisters, came with their parents on that visit. To say goodbye. I have no idea how they got there, or how they got home. They drove almost four hours, from Indianapolis to Columbus, and I still don’t know how they did it. They came in a vehicle that my mother’s cousin (essentially a fifth sister) drove. But when I think of being inside that van on the trip to and the trip from visiting my mother, their big sister, their firstborn… my mind breaks.

That was the worst day of my life. Not the day my mother passed; that day ranks second. I am empathic.  The sorrow was too much to process.

My mother somehow rallied, and lived for two more weeks. I’m looking at the calendar now, not believing what it’s telling me. I thought it was three weeks. It felt like three weeks. It was two. Eleven days.

Eleven of the longest days of my life. Eleven of the shortest.

Eleven days spent with my brothers. With my mother’s partner, David. Her love. With my mother and David’s dog. With my mother.

We watched movies. We watched family slideshows. We ate a lot of bagels, drank a lot of beer and gin & tonics. We celebrated life and dreaded death. We slipped into a temporary normal. I tried not to cry too much; I didn’t want to upset my mother. I screamed into a washcloth in the shower.

She knew she was dying. She talked to us about dying things: her will, her belongings, her wishes. Her fears. She decided she wasn’t going to die until my younger brother turned 30. In two more years. She eventually accepted that it wasn’t going to happen. She rejected any moves to make her a victim, a patient. She remained my mother, our mother, until the end. That was important, that was her job. Our mother.

The night before my mother died, we knew it was coming. I don’t know how we slept. I don’t know how I slept. The sound of her body dying filled the house, filled my brain. I took xanax. I read Harry Potter. I waited.

The morning my mother died, we took turns sitting with her, having our last moments, not leaving her alone. We didn’t want her to be alone. Eventually, we all ended up at the kitchen table, talking about breakfast. Death stops for nothing as mundane as hunger. We joked about how we had nothing to eat, how when someone is dying, people are supposed to bring food. We had overflowing amounts of food for the previous few weeks, but on this day, this most important of days, we had none.

It was 9am.

We were all at the table, out of her room, for about five minutes. Five minutes.

In that five minutes, my mother died.

She did not want us there as she left. She wanted to remain my mother, our mother. She took the last bit of control she had, and exercised it.

She left on her own terms.

In the silence that followed, I looked around.

On the kitchen counter sat three acorn squash.

 

my mama as Roxy in the musical Chicago

my mama as Roxy in the musical Chicago

Judith “Judi” Lyons Kremer, 5 August 1943 ~ 6 December 2000

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