The Lesson My Mother Taught Me After Her Death

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I love to celebrate motherhood. Every single day. Isn’t it amazing? Aren’t our mothers just so strong and resilient and beautiful?

I’m never quite sure how to feel about the official Mother’s Day. You know, because some of us aren’t mothers. Or maybe we’re mothers who lost a child. Or children who lost our mothers. But we all have mothers or did at some point. There’s always that.

This story is about my mother.

She’s gone now. But she lived once. She was a beautiful Italian woman with long dark hair and brown eyes. She had strong tan arms and painted scenes of barns and cemeteries and cornfields. Before dying, she held me in those arms and told me I was the wonderful, beautiful girl she always dreamed I would be.

That wasn’t so long ago. I miss her so much.

In life, my mother was a nurse to the dying. She often worked the night shift and would bring me a toasted blueberry bagel with cream cheese on Saturday mornings as I sat watching cartoons. She always told interesting stories about her work. So-and-so had died that night, she’d say, and what a beautiful thing it was.

The deaths she witnessed were spiritual, tragic, often joyful, sometimes angry. Her stories would make you a believer. She wanted to believe.

My mother taught me many things in life – she taught me not to pick my nose or cheat at board games. She taught me to cook and sew and give handmade greeting cards. She taught me the meaning of unconditional love.

But she taught me the most valuable lesson after her death.

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She passed away on a Friday morning in October four years ago. Outside, piles of gold and red leaves covered the sidewalks. The sky was blue; the air was crisp and cold. Inside, she lay drowning in fear and discomfort. Her lungs paralyzed, her faith wavering. A woman sat at the foot of her bed, reading aloud from the Holy Bible. I held my mother’s hand. “What if this is all there is?” she’d said a few weeks ago, her voice weak and horse. Each word was a struggle. She’d spent too many painstaking words that day telling me she’d realized it was easier to live when she was sleeping. Life was only hard when she was awake.

As she lay dying, her eyes connected with mine. I kissed her forehead.

“This isn’t all there is,” I whispered. “I promise there’s more. Right now you have one foot in this world and one foot in the next. All you have to do is lift that foot and step over. I promise it will be there. Just let go…”

When the dying take their final breaths, shallow gasps punctuate long periods of silence. The living hold their breath for a moment, too, wondering if that gasp will be the last. And then a sigh of relief as the wait begins again. As I listened and waited, my inner eye perceived a vivid ball of light over my mother’s right shoulder. It radiated joy and peace, confirmation that the next world had been there for her. She was gone. It was done.

Minutes later, a nurse quietly jotted down the time.

I didn’t cry. I felt like I should, but the tears wouldn’t come. Everyone grieves differently, I suppose. I grieved while listening to Duane Allman’s “Goin’ Down Slow” on repeat, staring at our bedroom wall. I didn’t like to come home so I shopped for new clothes and wooden train track sets for the boys and other things we didn’t really need. I remember one afternoon begging my husband to build train tracks with me on our living room floor. I took great comfort in avoidance, distraction, denial.

The first few years after my mother died, I dreamed almost nightly that we were having lunch or sipping Dunkin Donuts coffee or cooking dinner or making soaps. Every night we melted glycerin and carefully poured it into the molds. We popped in another videotape, a comedy this time. We laughed and talked about things happening in my life. “Have you ever heard of Ghost pepper?” I asked her one night as I dreamed. “Marcus says it’s the hottest pepper in the whole world.” We tried it, and it wasn’t that bad. Can you believe that? Every night she was healthy again, in remission from a disease that in reality always kills. ALS. Every night in my dreams, she beat the odds.

Only last year, in deep meditation at a craniosacral therapy workshop, did it finally dawn on me that my mother is gone. Like gone gone. Why this realization came more than three years after her death, I don’t know. Maybe that’s how denial works. But as I entered the vast spaciousness of meditation that day, the truth came booming out of nowhere. A sudden, awful shock. I think it was meant to come gently, but it felt like a train crash. I grieved hard that day. I cried loudly and messily. I ran out of tissues and started on the toilet paper. It felt out of place and liberating to grieve after that much time. It was a good thing.

Since that day, she’s only visited me a few times in my dreams and never as the woman she once was. One night, I dreamed we were debating what it means when people say that life is a journey, not a destination. “What is that supposed to mean anyway?” I said to her in my dream. “I always took it to mean that you should stop to smell the roses and all that.”

But my mother responded that to journey means to surrender. To surrender the desire to win, to be perfect, to be the fastest or the best. “If we’re all floating in a sea of emotion,” she said, “then to journey through life means to feel all of those emotions without denying yourself the experience that each one brings. To feel pain, regret, doubt, love, joy and remorse all at once and to learn from them. To feel elated about your child’s faltering first steps in the same moment you feel heartbroken about your mother’s faltering final steps. To let yourself bob along in the gentle sea of life with trust instead of fear. To be. Only then can you reach your destination.”

“The journey matters,” I heard her say before I woke up.

Don’t deny yourself the journey.

Happy journeying.

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This post originally appeared on Team Bunz.

The Mighty is asking its readers the following: Describe a memory with a loved one that you didn’t realize meant so much to you until they passed away. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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What I Wish I Could’ve Experienced With My Little Brother

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To my dear daughter, Jillian,

I write this letter as you are about to turn 4 and a half years old. You are an amazingly spunky, fun and smart little girl who recently became a big sister. And boy, are you rockin this new role that has been handed to you.

The way you care for Jude is evident in the way you do just about everything with and for him. But it’s obvious how amazing you are when you see the way he smiles and looks at you when he sees you, each and every time.

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You and I have a lot in common, more than you realize at this time. I, too, became a big sister when I was your age, to a beautiful baby brother. A little boy who grew into the most amazing and courageous young man, whom you never had the pleasure of meeting. He was taken from you also, way too soon.

We missed out on a lot of things in life, your uncle and I. He never had the chance to roll over to me and pull my hair the way Jude does with you. He never grabbed my toys or threw things at me, he never chased me around the table, spilled milk on my art project, ate the last cookie or dated my best friend. He never hugged me, kissed me, or even said my name. No matter how much he wanted to. Or how hard he tried.

So I ask you, my sweet daughter, to keep a few things in mind.

Wherever life takes you, be Jude’s big sister. Let him be your little brother. Let him chase you, and be thankful that he can walk. Let him call you 1,000 times, and be thankful that he can speak. Let him steal your old book reports, and be thankful that he gets to go to the same school as his very smart older sister. Laugh together, cry together, let him eat the last cookie. And when you can, eat the last cookie yourself.

It’s the little things that I never had with my brother that I think I miss the most. Sadly I’m not even sure if that’s true, since I was never given the chance to experience any of them.

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I promise you will miss him pestering you one day. And I pray that I’m around long enough to see that day. It won’t always be easy, but you’ll always have each other. Cherish that. It’s an opportunity I would give anything for, even to this very day.

Love with all my heart,
Your mommy, a fellow big sister who, like you, was blessed with the most amazing little brother in the world

P.S.: Yes, by the time you read this, I would’ve written a letter to Jude as well, reminding him to cherish his older sister.

The Mighty is asking the following: What’s a memory with a loved one that you didn’t realize meant so much until they passed away? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Let’s Be Honest. Special Needs Parenting Is Hard.

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It’s hard. Let’s be honest.

People forget your child is sick; she looks normal. If her shirt isn’t off or if she isn’t breathing hard, you’d never know. You’d never know I’ve seen her d-i-e twice. I spell it out because she knows what that word means. She can tell you what d-y-i-n-g is like. She can tell you exactly what she saw when it happened.

Let’s be honest. It sucks. My marriage suffers. My freedom suffers. My dreams are all but nonexistent. I’m 28 now; I was 22 when it started. Six years ago. She’s almost 5. I hardly know how to act in social situations. No one understands the anxiety, the heartache, how hard it is every single day. Her heart could stop at any time.

Let’s be honest. It never ever for a second leaves our minds. Some days are just too hard to handle, maybe not because of an event or episode but because it’s simply just easier to throw your head in a pillow and scream or cry or take an Ambien and hope to get some sleep. Some days I can’t keep my eyes open.

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Yes, we’re grateful for every day, but every day is hard. Basically, I just want to call my mom. I want her to make it all better.

Let’s be honest. This s*** is hard. There’s basically no easy aspect of it. But she has to live with it. I want to take it from her and put it in my body. I think everyone in the special needs community can agree that the worst part is not being able to “save” our kids. We have to live with it, love them through it and do our best, but we can’t save them; we can only be there and do our best.

Let’s be honest. It’s hard. You’re all amazing. We’re in a special club, I imagine we should get membership cards that give us free massages and babysitting from a nurse at least once a week. Until then, cry when you need to, drink a lot of wine, have breakdowns that make you seem insane; who cares? I bet if you ask your special needs kiddo who the best momma/daddy is they will point to you. So keep on keeping on. There’s a force behind you, a group of people willing to help, a community of thousands who get it.

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The Mom Who Uses Pennies and Old Military Vests to Help Kids With Autism

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When John Lyons turned 3 years old, he suddenly became withdrawn and far less talkative, according to The Stir. Soon after he stopped speaking entirely, John was diagnosed with autism.

John struggled to pay attention in his sign language classes following the diagnosis. To help provide her son with a sense of security and hopefully improve his progress in school, Crystal Lyons, John’s mom, began looking for a weighted support vest, a common tactic for soothing children with autism. After learning the vests were expensive and not covered by insurance, she devised her own solution — a vest made from one of John’s dad’s old military vests, weighed down with pennies. When John began wearing the vest, his performance in school improved — within a month, he learned 50 new signs and even began talking again.

Lyons decided to make sure no child in need of a weighted vest should ever go without one. She started Vests for Visionaries, an organization based in Columbia, South Carolina, that makes vests out of military uniforms and sends them to families free of charge. Lyons began making the vests out of her husband’s numerous old uniforms, but now she receives donated military vests from all over the country.

Since the program was founded in the fall of 2014, more than 100 children with autism around the country have received a repurposed military vest, The Stir reported.

I just want people to know not to give up after diagnosis,” Lyons told The Huffington Post, “and to know there is help and there are people willing to help if you just let them know.”

Learn more about Lyons’ inspired project in the video below.

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What It’s Like to Know I Shouldn’t Be Alive

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“Before my accident”… “since my accident.” I find myself saying these words all the time. Though I’d rather not continue to look at my life that way, the truth is that the “accident” has so profoundly changed me and the way I look at the world that I can’t not see it as a sort of rebirth. The following is an essay I recently wrote for a scholarship application about challenges I’ve had and what I learned from them. I think it is fitting for the third anniversary since my accident.

It is no surprise that the biggest challenge in my life has been my accident and becoming paraplegic. I have always been an active person and lover of the outdoors. In June of 2011, I was finishing up my physical therapy school applications and traveling to Colorado to enjoy my last summer of freedom before graduate school.

In Taylor Canyon, where I fell.

On my second day there, I fell almost 300 feet in a tragic rock climbing accident.

I broke my ankles, femur, pelvis, and back in two places, leaving me paralyzed at T6. I had 6 surgeries and spent three and a half months in the hospital.

My surgeon said that this had been a record-breaking fall and I had survived the unsurvivable.

This knowledge helped me to remain largely positive after the accident. While still in the hospital, I was researching “extreme wheelchair sports.” Knowing I shouldn’t be alive, I have tremendous gratitude for what I see as an extension of my life.

From the moment I woke up in the hospital, everything was new and to be savored, like the bites of non-hospital food and the sun on my face. I have learned that even in moments when you are overwhelmed or unhappy, you can focus on these little things and feel gratitude for the miracle of being alive.

Even with this positivity, it has been a difficult transition, especially getting out of the hospital and back to normal life. Reality sets in that your life is forever changed, and you think that maybe some of the things you dreamed of will never happen. However, I have learned to challenge thoughts of “I can’t” and try anyway.

For example, six months after my accident I started sit skiing. It took at least 40 lessons over two winters to learn to be an independent monoskier. This is longer than I have tried and failed at anything! Before my accident, I would have just given up. But I knew the freedom of getting out of my chair and flying through nature again on a sit-ski was something my soul needed, and I continued. This past winter, I enjoyed an entire ski season of independent monoskiing, and it was the adventure and the therapy I knew it would be.

Before my accident, I had been plagued with concerns about my weight and appearance. It took being broken to realize how perfectly healthy and beautiful I had been! However, I could easily continue to feel shame about my new body. I constantly try to extend this awakened knowledge to my present body, knowing that I am perfect and beautiful even as I am. Getting down on yourself is a waste of precious energy.

After my accident, I decided to continue to pursue my dream of becoming a physical therapist. After all, I thought that the hardest part of my life was behind me and I had so much insight to offer to rehabilitating patients. I applied to two schools in places that I could see myself living. When I got interviews at both, I was so happy that the schools could also see what a unique asset I would be! But I got rejected from both, one of them stating that it was due to my disability and inability to do essential functions of the job.

I was distraught. Could it be that this accident had taken away from me my dream of becoming a physical therapist, a goal I had been working toward for years? I decided that physical therapy was indeed my dream and that I would not be defeated. The following year, I applied to 12 schools all over the country. I interviewed in New York, California and Colorado. One by one the rejections came back, again. What was going to become of me?

Then one evening, I received a call from the personal number of the director of the PT program at the University of Puget Sound. “We will never accept you into our PT program because of your disability,” she said. But I sensed hope in her voice, an opportunity. “We would be willing to transfer your application over to the Occupational Therapy program, who sees no limitations for you.” I suddenly saw myself in a career that recognized me as an asset, where I could apply my skills, knowledge, and experience in unlimited ways. Finally, I was accepted into the Occupational Therapy program at the University of Puget Sound!

I think one of the hardest challenges in life is knowing when to fight for what you want, and when to relax and go with the flow of where life is taking you. This is a lesson I have had to learn through the process of being injured and its repercussions.

Living in a wheelchair in Bend, Oregon and going to occupational therapy school is something I never saw for myself. However, I truly believe that my life is becoming better and better all the time, and I am happy! Without this experience, I would have never been introduced to the incredible world of adaptive sports and all of the amazing people that inhabit it, athletes and able-bodied assistants alike.

I would have never known how kind other people can be or strong I am. I am putting my trust in life to challenge me, help me grow and reward me with awesome experiences, because that is what I have known so far.

This post originally appeared on Danielle Lancelot Watson’s blog.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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What Harry Potter Had to Do With My Recovery From an Eating Disorder

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In 2010, I went to Overeater’s Anonymous (Anorexia/Bulimia) meeting in New York City. It was in a large room — fluorescent lighting, bare walls, uncomfortable plastic chairs arranged in a circle. There were more than 30 people in the room.

And as we went around and shared, “recovered” anorexics and bulimics spoke about their struggles, their relapses, and the fact that, even in recovery, this horrible disease would plague them every day for the rest of their lives.

I left and called my mom, hysterical.

If this was my fate — poor lighting, uncomfortable chairs, and daily struggle — then f*ck it. Count me out.

Recovery felt like a lot of work for nothing. Why get better if nothing gets better?

I was in an unfortunate state of mind when I went to that OA meeting so many years ago. I was deep in the thick of my depression, and I was very much locked in a dangerous embrace with ED as we danced toward the abyss…

But after I left NYC, got my job at Apple, and slowly began the long road toward discovery, things shifted, and I realized that, while I may always bear the scar from this emotional wound, a scar that sometimes causes a hot flash of pain when the right trigger is hit… this doesn’t make me broken.

You know what it makes me?

THE BOY WHO LIVED. 

Yes, I’m about to reveal my inner nerd big time, but stay with me here:

Unless you’ve been living under a rock, you are probably at least remotely familiar with Harry Potter, and his unmistakable scar that sits right in the middle of his forehead.

This scar is a reminder that Harry lived when he should have died. It is a scar that ties him to the evil that would have killed him. It is a scar that burns and gives him flashes of crippling pain when the evil begins to flare up once again.

It is healed, and it is not healed. He is free from his would-be killer, and yet he is still at its mercy. He lives a good life, but it is not without its reminder of pain.

Harry Potter is not a victim; he is a hero. He is a hero who overcomes not because he has no pain, but in spite of it. He is the boy who lived — and lived, and lived. How many times should he have been killed in the course of that series? How many times did Voldemort try to take him out?

And yet. He lived.

And so did you.

Eating disorders are deadly. 60 to 70 percent of anorexics relapse. Between 5 and 20 percent might die because of complications relating to anorexia.

But you lived. You’re still living. Yeah, you have a scar, and yeah, it hurts sometimes. There are days when the blinding white pain of weight restoration overtakes you, and you can barely breathe. There are days when all you want to do is purge (exercise or otherwise), when the compulsion to overeat or restrict is the only thing you can think about. There are days when the weight of having to be okay is so heavy that you feel like it may crush your bones.

But you lived.

You have been poisoned. You have been cursed.

But you lived.

How f*cking miraculous is that?

You are a triumph. A miracle. Your scar is just a reminder of that miracle. You’ve beaten death, even if you don’t think you ever really got that close. The pain is a blessing, a reminder that we’re all living on borrowed time.

It is horrible that you have to hurt. It is unfair that you will always bear this scar.

But.

It means that you are the hero of the story. It means that you don’t have to give in to the evil. It means that you are the boy who lived.

So go live.

This post originally appeared on In My Skinny Genes.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Photo source: Harry Potter Wiki

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