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Celebrating Youth- 9-Yr-Old with Autism Rocks Out on Drums While Rick Springfield Leads the Crowd in Singing Happy Birthday to His 7-Yr. Old Sister

IMG_4738It’s 1982. Teen and Tiger Beat posters litter the wall around my record player and the rest of my room. My friends have Ralph Macchio, Matt Dillon, and Rob Lowe (basically everyone from the cast of The Outsiders which was still to come next year).  While the rest of the girls were posting a barrage of teen heartthrobs on their walls, mine held only one:  Rick Springfield — Dr. Noah Drake on General Hospital, singer, rocker, renaissance man.

Over thirty years later, my daughter is concentrating intensely on the sign she’s making with the new markers she got for her birthday. She turned seven today. This fact leaves a lump in my throat. I’m prone to spontaneous sobbing, especially on special occasions, but I try not to cry as I watch her drawing a rainbow with the sun shining on her barely-freckled face. I want to keep her in the world that exists when you are seven, which is so completely irrational and unreasonable; its impossibility makes my head spin. In the meantime, I try not to get motion-sick. I’m still figuring out how to mother a child very much like myself, a simultaneously frightening and enlightening experience.

For birthdays it isn’t unusual for our kids to ask for live concerts instead of tangible gifts.  Last year for our daughter, it was Katy Perry and for our son, Justin Timberlake. Music has been an essential part of our daily lives so it is only natural that we have shared that love with our children. When I saw that Rick Springfield was going to be right down the street, I prayed she might want to go. The concert happened to be on her actual birthday so I couldn’t tell her I was missing her birthday to go see Rick Springfield if she didn’t want to go. She was resistant at first, but my husband assured me, “I’ve got this,” as he cranked Jessie’s Girl to full volume in the car. “This is Rick Springfield? I love this song!” she shouted as she went back to singing with the rest of us, all at the top of our lungs.

 Over the next week she proceeded to listen to Rick’s whole collection learning nearly every word. We got tickets. She was going to make a sign hoping Rick might see it and sing her Happy Birthday, like Justin Timberlake had done on her brother’s 8th birthday.  Attention always seemed to be focused on him and he had inadvertently become our autism poster child after the JT birthday video had gone viral. She had only just recently started exhibiting behaviors that made us suspect that like her brother, she too, is very likely somewhere on the spectrum. The focus has always been so much on him I knew she must often wonder why she didn’t get the same thing.

We were pretty far in the back and it was starting to get dark so I was afraid the chances of Rick seeing her sign were slim. My husband had brought his copy of Working Class Dog and I brought a copy of Shades of Blue, the anthology my friend, Amy Ferris put together last year. It’s a collection of essays, one of which I wrote, on depression and suicide. I know, sounds uplifting, right? But that is exactly what this book had become as it was compiled and I brought it because I knew it was something Rick had struggled with. He wrote openly about his depression and failed suicide attempt in his memoir, Late, Late At Night, published in 2010. I brought a copy of that as well, hoping for the chance at getting it signed which started to wane as it got darker. I knocked over the cupcakes we had carefully carried around the venue trying to not smear the one that said “Rick”. As if she wasn’t going to be heartbroken enough if he didn’t see her sign, I ruined the flipping cupcake with his name on it.

minnie and sign

While we were at the concert, we had befriended Laurie, the feature story from Rick’s documentary, An Affair of the Heart. Laurie told the story of how music had saved her, specifically, Rick’s music, while recovering from a heart surgery to correct her congenital defects that left her debilitated and disabled. Luckily, Laurie ultimately recovered after more surgeries and many years of struggle, but we could certainly relate to the saving power of music. We had witnessed it in our own lives, so when we met Laurie for the first time, it was as if we were long lost relatives that hadn’t seen each other in years. Music does that — it connects us and brings us together. It has the ability to tear down walls you thought were impenetrable. We had seen it happen very much like magic with our son, Julian.

He had come alive under the spell of music. We had witnessed his metamorphosis since it had become a larger part of his life. The experience of Justin Timberlake singing Happy Birthday to him along with 25,000 people has changed him forever. It has given him the ability to integrate into a world that had previously been uncomfortable and foreign to him. In a day and age when music programs are being cut left and right from school curricula, Julian’s video going viral propelled us forward designing music programs for autistic children that is currently in the works. I don’t think it’s an exaggeration to say music saves lives. Some might say that I’m a dreamer. My response can only be, But I’m not the only one.

Music had been one of the things that had brought my husband and I together in the first place. On paper, the likelihood that we would ever stay together was small. We met on Yahoo Personals. I was a farm-girl from Missouri, he was a Jew from New York. On our first date, he made meatballs and gravy (his Italian grandmother’s recipe, swoon). Then we sat on the floor and listened to music until 3 a.m. He introduced me to Pink Floyd and I exposed him to Radiohead.  A week later, I moved in with him. It was the most ridiculous thing we ever did, and we never looked back. But that’s for another story.

Now we had these precious children in the mix. Fragile, high-functioning autistic children (one confirmed, one suspected) entrusted to us to teach and to love. As their parents, it is our job to make a way for them to experience life at its fullest, despite any disabilities they might have. We had felt the power of music in our own lives and wanted nothing more to share that with our children. Growing up, my husband and I had both sought refuge in music. We have had many late night discussions, our first date included of how music carried us through the good and the bad. It had always an integral part of my life in both the happy times before the double-digits – and later through the depression that secretly began when I was ten.  I had forgotten so many of these things until my daughter brought the 80’s back to me. Now we are back to vinyl. Everything old is new again. Like a record, it all comes back around.

Kids have a way of bending time back on itself.  Watching her sing every word to Jessie’s Girl sends me down a wormhole where I am her age and it’s still 1981; my parents are still married and my favorite thing ever is my fuzzy blue legwarmers. She is there now, the place I once was, where hope is palpable and anything is possible. I long to keep her here where there is little pain and lots of beauty and wonder. The place that no longer exists after you discover how dark and horrible this world can be.

But tonight was for celebrating and we weren’t thinking about the horrors befalling the world outside. Rick’s guitar tech had let my husband in on a little secret that only the most hard-core Rick fans know. Apparently Rick loved children and like to get kids up on stage during his song, Don’t Talk to Strangers. I thought at the very most, Minnie might get a Happy Birthday from Rick if he could see her sign. My husband took the kids down front as soon as he heard the song begin and what happened next I’m still pinching myself to believe. Rick Springfield not only led the crowd in singing Happy Birthday to Minnie, they had a dance party, they sang, and Julian even jumped up on the drums.

And that wasn’t the end of it. We met Rick backstage after the show and Minnie gave him the cupcakes even though the icing was ruined and I gave him Shades of Blue and he signed our stuff and (breathe) he was so gracious and kind and my mind is still spinning because how do you fall sleep after Rick Springfield brings your children to the stage and sings your baby girl Happy Birthday? How do you sleep knowing the impact a single event can have on a young life? How can I sleep without shouting from the rooftops about the magic of song?  I can’t. I can’t sleep and the neighbors will likely call the cops if I start shouting from the mountain at this hour. So I write. I keep writing until it comes together like a song. It’s made of words instead of notes, but it’s my composition. A letter to my first love. Music.

Longfellow wrote, “Music is the universal language of mankind.” It’s the reason a chord progression can reduce us to tears. It’s why even when the words are vague or we can’t understand them or sometimes when there are no words at all, it can still move us in the deepest parts of our soul. I learned this language when I was young and I clung to it. I’m still holding it close and I’m still listening. I’m teaching it to my children. I find it makes it much easier to understand this difficult world.

Rick Springfield wrote, “The future of the world’s in the hands of children. So celebrate youth. Teach them right. Looking in a child’s eye, there’s no hate and there’s no lie. There’s no black and there’s no white.” I can think of no more relevant words for these times. I can think of no other words right now that give me such hope. I know there is so much to mourn these days. But for today, on this day my baby came into the world seven years ago—We’re gonna celebrate youth.

 

Celebrate Youth

by Rick Springfield

I can see the older man
Looking at the younger man
I can see the younger man
Looking at the boy

Over there the older woman
Is looking at the younger woman
I can see the younger woman
Looking at the girl

‘Cause every man sees
In the younger man the hope
And every woman sees
In the younger girl the dream

Everybody lives
The pride and passion of the young
From the womb to the tomb
We will remember what it means

So celebrate youth (celebrate)
Those who have it (young ones)
Celebrate youth (celebrate)
Give them sight

The future of the world’s in the (celebrate)
Hands of children (young ones)
So celebrate youth (celebrate)
Teach them right

Looking in a child’s eye
There’s no hate and there’s no lie
There’s no black and there’s no white

I can see the older man
Sometimes in the older man
I still see the young boy
Burning in his eye

And locked up here inside our spirit
Is the child that we are, hear it
Some of us will always fear it
And some will heed the cry

But everybody sees
In the younger one the hope
Everybody sees
In the younger one the dream

Everybody lives
The pride and passion of the young
From the womb to the tomb
We will remember what it means

Celebrate youth (celebrate)
Those who have it (young ones)
Celebrate youth (celebrate)
Give them sight

The future of the world’s in the (celebrate)
Hands of children (young ones)
So celebrate youth (celebrate)
Teach them right

Looking in a child’s face
There’s no pride and no disgrace
There’s no struggle, there’s no fight

Everybody sees
In the younger one the hope
Everybody sees
In the younger one the dream

Everybody lives
The pride and passion of the young
From the womb to the tomb
We will remember what it means

Looking in a child’s eye
There’s no hate and there’s no lie
There’s no black and there’s no white

 

 

For more information on autism or to find out about how you can get involved in our developing music program, visit Tree of Life United Ministries @ http://tolunitedministries.org/

Becoming Real

IMG_4569What?” I mouthed to my husband through the car window, pointing to the phone still up to my ear. I’d been holding for 30 minutes and cut off twice — I wasn’t hanging up without good cause. We had stopped for gas after our son’s occupational therapy. I didn’t even notice my husband had wandered inside until I saw him walking quickly back toward the car with a strange look on his face and a lottery ticket in his hand. As I am finally patched through to the nurse reviewing my long-term disability claim, he’s feverishly tapping on the closed window “An elderly woman tripped over a speed bump and hit her head. She’s saying she doesn’t need an ambulance.”

As he disappears back inside, it clicks through to voicemail. I leave a discombobulated message for the nurse and sit momentarily disoriented wondering what to do. Emergencies are not my forte and I’m out of practice, dull, medicated. I haven’t been able to work as a nurse in four years.

I ransack the glove compartment for anything absorbent and find nothing useful save a nearly empty pack of travel tissues and an unopened bottle of water. My head launches without pause into a rapid-fire assessment of my usefulness in this particular situation: I can’t leave the children in the car by themselves. Surely they called an ambulance already. I’m not even a legit nurse anymore. My nursing license lists my status as inactive. Tissues? These are going to stick in the wound. Diapers. Don’t panic. I need diapers.

One day when I was still a practicing RN, we were leaving the supermarket when an older disabled man was struck by a car crossing the street. He was still lying in the crosswalk next to his overturned scooter as we were pulling out of the parking lot — someone had called 911 but they hadn’t arrived yet and his head wound was gushing. All I had was a stash of diapers which sufficed until the paramedics arrived moments later. Despite working in the Neonatal ICU for seven years, emergency situations were out of my comfort zone. Emergencies in the ICU were usually controlled, predictable. Someone who knew exactly what the hell to do was always right there. That wasn’t me. I brought Huggies to the scene of the accident. Today I didn’t even have those. I took my pocket tissues and my water, and got out of the car.

That morning I had prayed for reassurance that I still had something useful to offer and here I didn’t even have a first aid kit. Make it clear, God, I had prayed. I’m thick sometimes. Lately I had felt useful to no one, least of all myself. All the nonsense with having to keep proving my disability to the insurance company despite my doctors repeated documentation of three unsuccessful surgeries had me feeling cynical about my chances against corporate bullies and the general goodness of humankind.

I was certain I had found my true calling in nursing and I counted on doing it until I couldn’t do it anymore. I would feel better for a while and would work as much as I was able in between surgeries, but after several months the pain always returned. Still, I held onto to my plans, clung to them really, while I tried to heal my back until my spine was finally fused. Inactive, they call it. That’s what they put on your license when you aren’t practicing anymore. Status: INACTIVE.

Inactive– adjective, not working; inoperative. Synonyms: idle, lifeless, inert, motionless.

That’s exactly what it feels like when you lose something you love, that somehow you aren’t quite real anymore. That you are inert, lifeless.

“If you could just drive me down the street to see if my friend is home,” she kept saying with her legs dangling sidesaddle out the driver’s side door next to the diesel pumps. The blood around her head wound was already coagulating but a steady stream was dripping off her brow onto her cheek, and running down her neck. She lived alone and had no family nearby, she told us. Her friend might be home though, she kept insisting, she just couldn’t remember the address. I told her I was a nurse and that an ambulance was on it’s way. She made it clear she didn’t want all this commotion when she heard the sirens approaching

I don’t need an ambulance,” she kept repeating. The assistant manager was hovering nearby, completely beside himself, trying to make himself useful. It occurred to me later I should have sent him to look for a first aid kit, but he was as clueless and unprepared as I was. Before we pulled up he was about to drive her off the premises and down the street to look for her friend’s house. Even in her fragile state, she nearly had him convinced that she didn’t need medical care. He thanked us profusely for making him call an ambulance. This was his first week at this new job and he didn’t really know what to do, he explained.

I poured the water onto my pocket tissues and wiped some of the blood from her face and where it had collected in the hollow of her neck. I looked down at her arm– both the bones were snapped in two the same way mine was the day I fell off the monkey bars in the 3rd grade. The only thing I knew to do was comfort her and it was only a few moments, because thank God the paramedics showed up and saved us all in what felt like seconds. I took a deep breath and gratefully stepped out of the way while they opened their emergency gear around the car and tended to her. I whispered a prayer for them all as I walked back to the car and gave thanks for a day of saves. We had saved the assistant managers job. The paramedics had saved the injured woman. The injured woman had saved me.

For those moments, while I was wiping blood from a stranger’s face, I forgot all about the insurance company bullshit. Serving others has that effect because sometimes it means showing up with a mostly-empty pack of pocket tissues. Sometimes it’s just holding someone’s hand or wiping blood from their face. Sometimes it’s not knowing what to do and showing up anyway.

And unfortunately my past good deeds do not protect me in any way. There are no minutes to roll over, or special passes to cash in for public service. I’ve learned bad shit still happens and the good guys don’t always win. Despite providing the insurance company again and again with what seems to me sufficient documentation, a year ago they dropped my claim. I’ve been fighting them ever since.

They don’t know every time they suggest that I would choose to not return if I were able, it’s a knife in my heart. They don’t know I had counted on nursing carrying me through the rest of my working years. They don’t consider that it not only sustained my family financially, it sustained my well-being. So I have had to seek other means in search of the wellness that comes with doing what you love. I have found writing to be one of the only things that has helped me work through such abrupt changes in my perfect plans. And for now, as long as I’m breathing, I’m going to keep doing it. It has kept me alive.

As for the insurance company, they want nothing more than to dump a drain like me. Losing one’s livelihood is hard enough and then you lose the insurance that you get in case you can’t do your job. These things did not factor in to my precious plans. And my story isn’t special, it’s one of millions. My research has revealed a treasure trove of patient stories on the internet; horror stories of big-corporate insurance companies screwing over the little guy. I’m now well versed in what happens to you when have an injury that doesn’t get better. They get tired of paying you whether you have a legitimate claim or not. They will wiggle and worm their way around every law. They will lie, cheat, trick, stalk and surveille you — anything to get out of making good on your policy, all while using Snoopy as a mascot.

They operate on the premise that I like collecting less than half my salary and assume I would pretend to be hurt while I rot away into nothingness and get paid for it. As much as I know that it isn’t personal. It is. It’s calling me a liar, a fake. It’s saying, “There’s nothing wrong with you,” when something clearly is.

That day I fell off the monkey bars in the 3rd grade and snapped both bones clean in two, I had gone to the school nurse. It’s probably just sprained, she said sending me back to class after first recess at 10 am. I went all day guarding my arm close to me and that afternoon I took the long bus ride home. We lived in the sticks and often didn’t get home until 4:30 or later. There was an older boy, Kevin, who always sat in the back. He taunted me as I got up to get off the bus when it finally stopped in front of my house. “There’s nothing wrong with you,” he said as he shoved my arm into my abdomen. I got off the bus and walked through the dirty gravel up the driveway.

When she saw my arm, we did not pass go or collect two hundred dollars — my mom took the ten-mile drive back into town straight to the emergency room. My hand was hanging at the wrist, a near-greenstick fracture where the bone comes through the skin. I hadn’t complained all day at school. I trusted that a nurse would know better than I did until it was clear she didn’t. I was eight then, but the fact is, I’m still figuring out how to be heard at forty-one. It has taken me all the time in between to figure out that some of us just speak more clearly in the written word.

Who knows if the insurance company has a chance at redemption, or if the nurse I was on hold with that day will have mercy on me; they are, after all corporate machines. I was not silent this time, I appealed their decision. I didn’t let them push me and tell me I wasn’t hurt. And Kevin? Sometimes I think about him and hope he got his redemption via a nurse-given enema. No, not really. Ok, maybe a little bit. But more than that, I pray he grew up and learned how to treat a human being. He taught me what it felt like to not be seen or heard and I carried it through my nursing career and carry it still today. It made me a better person, a better nurse, so thanks, Kevin, and by the way, I forgive you. Everyone is an asshole sometimes.

I still feel like a nurse as I keep learning to be a writer. It’s not something that leaves you. It’s a difficult transition and at times I am utterly lacking confidence in my ability or potential with a pen. In order to do it well, you have to make yourself vulnerable, and maybe being hurt has provided me that vulnerability. But the solace offered me by writing has also kept me isolated and inside my head, which has made me slow, off my game. That was clear to me when the only thing I could offer the poor lady at the gas station was comfort and an almost empty pack of pocket tissues. But what she gave me was priceless. I need blatant reminders despite my purest intentions. Nursing kept me grounded, reminded me that being alive means that you bleed. It’s why I miss it like a lost limb. To see the truth about what it is to be born, to live, to get sick, hurt, to die — those experiences keep us honest, humble, real.

And being real means my joints are loose and shabby and yes sometimes (almost always) it hurts. It means changes happen midstream and there is not a damn thing you can do about it. Being real means losing your job and being on hold for 30 minutes with insurance company. And sometimes, being real means bleeding from the head at the gas station. I know that being alive means it can be no other way. For me, it has meant getting down to the truth of things, even when it isn’t pretty. Writing has served me well to sift through the insecurities and fears I mistakenly thought were behind me. Getting it out on paper has been a safe-haven while I have mourned the loss of my best-laid plans and tried to forge new ones.

I’ve long since lost my sharp edge, dulled by unrelenting pain and mind-numbing medications. I had no supplies at the gas station and had forgotten all the things you do in emergencies because writers aren’t required to know these things. Lucky for me they don’t need strong backs and quick feet are not a prerequisite. Writing has expanded my awareness in ways that otherwise might have escaped me, but it also comes with a heaping dose of self-doubt. For me, sacred as it is, holding a pen is not the same as holding someone’s hand. I’m still learning how words can save us. I’m still learning how to let them.

This morning as I sit at the kitchen counter while my coffee drips and try to make heads or tails of this essay, my phone rings. It’s 5:30 am. I haven’t been up this early in a while, but pain woke me and it’s my favorite time to write. It’s staffing on the phone. My number is still in the system. They need nurses to work 0700-1900. And though I know I can’t, somehow that comforts me—to know I’m still needed. It tells me, just keep going. It says, this is where you are right now. It gives me just enough to endure when I want to give up.

So I will keep writing about this journey, unexpected as it is. I know it doesn’t happen all at once; that becoming Real takes a long time. And even though I can’t do what I once could, the important stuff I learned not from a science degree or nursing school or even writing. The really good stuff I learned from a beloved children’s book because the stories we’re told when we’re kids are the ones we never forget:

“Real isn’t how you are made,’ said the Skin Horse. ‘It’s a thing that happens to you.’

‘Does it hurt?’ asked the Rabbit.

‘Sometimes,’ said the Skin Horse, for he was always truthful. ‘When you are Real you don’t mind being hurt.’

‘Does it happen all at once, like being wound up,’ he asked, ‘or bit by bit?’

‘It doesn’t happen all at once,’ said the Skin Horse. ‘You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand….”

Margery Willliams,
The Velveteen Rabbit

This is for us….

IMG_4541“… so this is for us.
This is for us who sing, write, dance, act, study, run and love
and this is for doing it even if no one will ever know
because the beauty is in the act of doing it.
Not what it can lead to.
This is for the times I lose myself while writing, singing, playing
and no one is around and they will never know
but I will forever remember
and that shines brighter than any praise or fame or glory I will ever have,
and this is for you who write or play or read or sing
by yourself with the light off and door closed
when the world is asleep and the stars are aligned
and maybe no one will ever hear it
or read your words
or know your thoughts
but it doesn’t make it less glorious.
It makes it ethereal. Mysterious.
Infinite.
For it belongs to you and whatever God or spirit you believe in
and only you can decide how much it meant
and means
and will forever mean
and other people will experience it too
through you.
Through your spirit. Through the way you talk.
Through the way you walk and love and laugh and care
and I never meant to write this long
but what I want to say is:
Don’t try to present your art by making other people read or hear or see or touch it; make them feel it. Wear your art like your heart on your sleeve and keep it alive by making people feel a little better. Feel a little lighter. Create art in order for yourself to become yourself
and let your very existence be your song, your poem, your story.
Let your very identity be your book.
Let the way people say your name sound like the sweetest melody.

So go create. Take photographs in the wood, run alone in the rain and sing your heart out high up on a mountain
where no one will ever hear
and your very existence will be the most hypnotising scar.
Make your life be your art
and you will never be forgotten.”

― Charlotte Eriksson

If Poems Come

DSC_0841“And if out of this turning-within, out of this immersion in your own world, poems come, then you will not think of asking anyone whether they are good or not. Nor will you try to interest magazines in these works: for you will see them as your dear natural possession, a piece of your life, a voice from it. A work of art is good if it has arisen out of necessity. That is the only way one can judge it.”
― Rainer Maria Rilke

Poetic DNA

IMG_1210

If words could become part of our DNA (they can), then these must be part of my genetic code by now. Words I’ve read so many times they’ve no doubt been translated into corresponding base pairs and amino acids, ones that have become rungs in the ladder of my double-helices. Maybe that is why sometimes they are the only thing I can find sense in, as if my very cells recognize their song from memory. These are words that always feel like home…

Living In the Shimmer

IMG_7482“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this.”
Henry David Thoreau

When we first moved to the valley, watching the lights from the summit of our new home was unsettling to me. Mesmerized by the orange urban glow, I was left with an uneasiness watching the shimmer of the lights although I couldn’t place why. When anyone visits for the first time, they nearly always go to the windows and comment on the view- it is truly stunning. But the lights that I had expected to be still, were in fact,

Shades of Blue

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“The silent epidemic of depression affects millions of people and takes dozens of lives everyday, while our culture grapples with a stigma against open discussion of mental health issues.

Editor Amy Ferris has collected these stories to illuminate the truth behind that stigma and offer compassion, solidarity, and hope for all those who have struggled with depression.

Shades of Blue brings the conversation around depression and sadness into the open with real, first-hand accounts of depression and mental health issues, offering empathy to all those who have been affected by these issues. It’s time to scream out loud against this silent annihilator: We are not alone.

Shades of Blue,  edited by Amy Ferris, now available from Seal Press Order it here

It’s one of the scariest things I’ve ever done- telling the world my secret. But in preparation for the release of Shades of Blue, Amy Ferris asked us to think about why we began writing about our depression in the first place. She wanted us to share what it feels like to share our deepest darkest secrets with the world.

I had been working on this piece for over a year, this essay that would somehow miraculously work its way into Shades of Blue. I had stumbled upon Jen Pastiloff on Facebook and her writing blew me away. Her honesty and authenticity awakened something in me that said, “Hey, You! Yeah, you…..You know you don’t have to hide anymore, right?”=

She inspired me in a way that made me think I could do anything and so I started writing in attempt to bring myself up to snuff with “becoming a writer”– but mostly it involved, “becoming human” as Jen calls it. She held my hand as I ventured out into uncharted waters with a pencil as my oar. She showed me the meaning of the word sister. She showed me the meaning of the word “tribe.”