The Memory That Became Precious to Me After My Friend’s Death

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I was 38 weeks pregnant, a pumpkin with a head, achy, tired and moving slowly. I sat at my desk in my office looking at the piles of work and realizing that I no longer had the energy or brain power to focus. I waddled into my supervisor’s office.

“Sylvia, I think I need to start my leave.”

Sylvia* was a tall redhead, brilliant and kind. Her smile said that she knew this request was coming, even though I had told her earlier that I was going to wait one more week. She didn’t hesitate. “You bet,” she said, and finalized the paperwork. My leave started the next day and I was relieved. She was a good supervisor.

One November Saturday, Sylvia asked me to meet her for coffee. She loved coffee, never to be seen without a cup in her hand and I was happy to take a break from my toddler son. We sat outside Starbucks trying to enjoy the last vestiges of warm before winter started in earnest, holding our coffees closely.

“I have decided to leave my job. It is time for me to move on,” she told me. She was going to take a job in another country, one that offered a chance for growth and new challenges. I understood her decision, her need to move her career forward.

I also knew that I would miss her. Over the years we had grown to be friends, not just colleagues, and it wasn’t like she was going to be across town when she left.

The day of her departure drew near. Her office was emptied, diplomas, awards and certificates carefully boxed. I was on the road at a conference, looking forward to a farewell party in a couple of days, when I got a call. Sylvia had been in Starbucks ordering a coffee when she stopped being able to talk.

She was rushed to the hospital, where they discovered a mass in her brain the size of a fist. It was brain cancer, a horribly aggressive brain cancer.

“Don’t look it up online,” my friend Marla told me. “It is terrifying.”

But doctors were optimistic. She was young and healthy and an ideal candidate for new treatments. And they worked! Six months later, doctors declared her cancer-free. She started working again.

We attended a conference in Washington, D.C. a month later. My son was old enough to appreciate the trip, so we decided to make it a family vacation as well. He got to see the dinosaurs at the Natural History Museum and the view from the Washington Monument.  He stood in awe at the gigantic yet gentle statue of Lincoln in the Lincoln Memorial and we read the Gettysburg Address together.

On our last night there, Marla, Sylvia, my family and other friends had dinner together in Georgetown. As we walked back to our hotel afterwards, my husband and I took up the rear watching those walking ahead of us. Sylvia was chatting away with my son, the Navigator, holding his hand, and he looked up at her adoringly as they walked.

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Photo source: Thinkstock Images

I remember feeling how blessed we were. Months before, we thought we were going to lose her and here she was holding my son’s hand. I was so grateful that she was there with him, with us.

A few months later, she completed her plans to start her new job and moved away. We kept in touch as much as we could, juggling our jobs and our lives.

It was a year after that night in Georgetown when Marla called me. “Sylvia had a stroke.” The cancer was back. This time it was inoperable. It was just a matter of time.

Sylvia passed away almost four years ago. I still miss her. I miss her laugh and her wit and her brilliance. That memory of her laughing with my son has become exceedingly precious, like a beautiful gem.

I am even more grateful now that he had a chance to hold her hand.

This is what my son told me to say for him for Sylvia’s memorial:

“Dear Sylvia, Thank you for playing with me and carrying me in Washington, D.C. I will miss you. I know that God has made you at home in heaven.”

*The names in this story have been changed.

This post originally appeared on Autism-Mom.

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 [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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What It Feels Like to Live With Chronic Fatigue

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Many people have asked me what having chronic fatigue syndrome (CFS) is like or what it feels like. Sometimes, they just presume what it’s like. Sometimes people assume I must feel tired all the time and just need more sleep. However, honestly, this is far from the truth.

Deep below the relatively “normal” person you may see in front of you is a real tiredness that is so much more than you could ever imagine. Today, if you will come with me, I am going to take you on a journey through your own experiences and hope that in just a small way, it will give you a further peek into life of just one person with CFS.

I would say I want you to close your eyes and imagine, but if you do that you can’t read what I am saying. So, with your eyes wide open, take a moment to think about the times in your life when you have been the most tired.

Was it after a night when your child woke every 45 minutes without fail?

Was it the morning after an all-nighter to get a university assignment done and dusted?

Was it after a sleepover at a friend’s house when you were a teenager?

Was it after running your first half marathon, Tough Mudder or Spartan race?

Was it the evening after sitting a whole day examination?

Was it after a week of teaching a new kindergarten class, when you just got home and collapsed on the couch?

Take yourself to that time. How did you feel? Yes, you were tired, but what did tired feel like? Were you walking around in autopilot, just going through the motions of what you needed to do? Brushing your teeth and eating your breakfast (probably in that order) without the energy to lift the food or the brush to your mouth, but knowing you needed to do it? Were you eating for the sake of eating, even though you weren’t hungry and the thought of food made you nauseous? Was there a dull headache that just persisted throughout the day?

Was it not quite trusting your judgement and second-guessing yourself as you drove into university to drop the assignment off? Did you make a wrong turn on a trip you had done hundreds of times? Did it feel like your spatial awareness was kind of off as you bumped into chairs or people as you walked down the sidewalk?

Was it the feeling of being highly sensitive to any noise, smell or to the person who said or did the smallest thing wrong? Did you find yourself snapping or crying with no real reason, as those things that wouldn’t have normally annoyed or upset you became major stressors?

Was it the feeling of adrenaline after the race? The surge of breathlessness, the dizziness, the muscles beginning to cramp, the deep exhaustion slowly beginning to overtake your body as the adrenaline wore off and the pain began?

Were you completely and utterly brain dead after sitting the exam? Did you struggle to add up the correct change for the train trip home? Did people ask you what you had done that day, and all you could do was stare at them blankly?

Or were you collapsed on the couch unable to contemplate lifting your arms to reach the glass of wine on the coffee table? Did you get a deep feeling of heavy limbs that even a glass of wine after a long week can’t remove?

Fatigue is more than just tiredness.

It encompasses emotional, cognitive and physical factors. It encompasses all of your life. The combined description of the feeling of tired above would be the baseline, the everyday, for someone with chronic fatigue syndrome. It’s as if the brain has switched a switch and recreated a new normal.

A new normal where mental clarity, spatial awareness, physical wellbeing and emotional stability are out the window.

A new normal where you can feel out of breath and dizzy whilst lying in bed. A new normal where your limbs now weigh a ton.

A new normal where your body is in pain constantly. A new normal where you wished you just felt tired or that a good night’s sleep would make a difference.

This is what being tired (fatigued) means to a person with CFS.

But I have hope, a hope that is bigger than how I feel. A hope that sustains me each and every day: I lie down and sleep; I wake again, because the Lord sustains me (Psalm 3:5).

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Please Note: I have people hesitant to tell me they are tired or they are shattered after a long night, and then follow it up with, “But not as tired as you must be,” as if somehow they have no right to complain or be tired. Could I please let you know I have the upmost empathy for anyone who is tired for any reason? Please don’t feel like you are complaining, because being tired is exhausting.

A version of this originally appeared on Make It, Bake It, Fake It.

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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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