death of a child Archives | Sheryl Steines

Category Archives for death of a child

The Fallacy of Normal

Fallacy of Normal

Nothing about my life as a parent has been especially easy or completely normal. Even getting pregnant came with fertility issues, morning sickness, cramping, pre term labor, multiple hospital stays and a carbon monoxide detector going off at 1am.

Once the babies came after my first pregnancy, I really believed I was done with the bad stuff, that I could go on my merry way into the normal sunset. But even that, wasn't meant to be. I gave birth to twins and even that couldn't end on the right side of happiness. Kids aren't born that way. While I had one healthy twin my other was born with a neuromuscular disorder. Her life was hard, with hospitals, multiple medical procedures and a feeding tube. I lived with nurses in the house for 8 months. If there was no nurse on duty, I was it.

My daughter Stephanie Paige died at 11 months old. It was a painful life for a small body, it was a stressful time for the family. We knew the outcome, regardless of what we did, and when she died, we thought, foolishly I might add, that we would soon be ushering in something more normal.

While children don't come with instruction manuals, they also done come without issues. My oldest, twin to Stephanie was diagnosed with ADHD, severe anxiety and OCD. Over the course of her young life, she had Theron's  Disease in her left eye, Gilbert's disease with her liver, scoliosis, torn ligaments in her right wrist. I took her to therapists, psychiatrists, the pediatrician, an orthopedic.

My youngest was happy, athletic, social, busy. While I dealt with my oldest and her issues, I relished in what appeared to be normal, easy. But at 12 she came out as gay and with it came depression, suicidal thoughts, low self-esteem. This round came with drugs and therapists. And in the end the announcement that my youngest daughter was a trans male.

It brings on sleepless nights, as I worry about an unkind world and how it will affect my children. No parenting book guides me through these issues.

We all buy into normal; we live for it on Facebook where we put our best foot forward, our pride in our families and children, in our bragging, look what I have. But that's not life, it's certainly not normal. It's a fallacy.

Life is messy and hard and sometimes it sucks beyond the telling of it. My life oftentimes feels like I'm a roller coasters as I'm up and down, upside right, and just when I see the end of the tunnel, when the ride will stop, it drags me along and pulls me upwards to the next, newest, problem, more complicated than the last.

I move forward in a fog, still hopeful that I will see the light at the end of the darkest tunnel. Right now, all I see is more dark. To keep sane, I write, and today I start draft 6 of my fourth book in The Wizard Hall Chronicles called Prophecy. It's where I can feel normal because I can write about something “normal.”

When we move past the fact that nothing in life is normal and will never be, we can strive for acceptance, act with compassion, and live as humans without labels. It's far better to live for happiness than normal. Only one is achievable.

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Hope and the Muscular Dystrophy Telethon

Hope and the Muscular Dystrophy Telethon 

Comedian Jerry Lewis offered hope to families with relatives suffering from Muscular Dystrophy. He died Saturday at the age of 91. When I was younger, I watched the telethon with rapt attention; for whatever reason, I was drawn to it and the cause. At age 9, I held my own Muscular Dystrophy carnival. In high school we watched the local fundraiser live, in a mall. I went to a college that was handicapped accessible, and one of my classmates had MD. I even saw him on the telethon my junior year of college.

When it Hits Close to Home

When I gave birth to my twins in 1998, my daughter Stephanie was born with a neuromuscular disorder, similar to MD but not, there is still to this day, no diagnosis.

As we struggled to care for her deteriorating body, the telethon held a different meaning for me. This time what they did, the research and care of those afflicted, had relevance in my life. I will never forget the first time I called during the telethon to donate; I could barely speak to make my pledge.

It's All About Hope

Though we didn't have a diagnosis of Muscular Dystrophy and was unable to utilize the facilities, I still donated, because I understood how difficult it was to care for someone whose body was dying. Physical therapy, doctor's appointments, medicine, nursing care, hospice care. I would watch the telethon, as long as I could stand it, crying because it as so close, because I felt the hope, that some day, all these undiagnosed diseases would have a name. Because with a name, there was a gene and with a gene a treatment could be researched. Hope.

Some day other parents wouldn't have to live through the pain, anger, sleepless nights, nursing shortages, as they watched their child suffer with breathing issues, oxygen shortages just before the weekend, or hospital stays.

Jerry Lewis Passes Away

Jerry was the spokesperson for the Muscular Dystrophy Association and no one knew the reason why he did this. Why he stayed up for three days over Labor Day weekend, every year. Only his first wife knew. It was a remarkable devotion to a cause and his death makes me sad. It's a reminder of my daughter and her struggle, of all the times, I searched for resources to assist with finding medical equipment or nursing help. What the MDA does for so many is make it easier for families to care for their loved ones and most importantly it offers hope that one day a cure will be found. May he rest in peace. He will be missed.

To donate –




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Life – Writing Your Own Story, Literally and Figuratively

My Life – A Raging Tornado

Life, my life has been a roller coaster, of highs and lows, some so low, I thought that there would never, ever be another problem to contend with for the rest of my life. I've struggled to get pregnant, I've gotten pregnant easily. I had a difficult pregnancy, I've had an easy one. I carried twins, I've carried a single baby. I've given birth to three children, one born with a genetic disability that took her life at 11 months old; I have a child with such severe anxiety, that it has been a struggle for her and the family to live something normal, and now I deal with a transgender child.

As soon as I think I'm coming to the end of the roller coaster, just as it's ready to pull into the station, I instead, and catapulted back to the first loop d'loop to start the journey again.

My Life – Yes, Sometimes I feel Sorry for Myself

I could have become an alcoholic, or a drug addict or harmed myself, but I didn't. I thought for a while I was handling the lows, coming through them and surviving. What I was doing was merely surviving, allowing myself to merely be a victim of my circumstances. And yes, in that I felt sorry for myself. Sometimes it's hard not to do that. After all that I've seen, all that I've lived through, after life battering me, throwing me from one situation to another, I realized, it's okay to feel this way. Sometimes you have to let it go and simply feel for the loss of what you thought life would be. But what's not okay, is wallowing for too long in the low.

My Life – At the Edge of the Abyss

I've learned a lot about myself in the 19 years of parenting. It's okay to not be perfect. And it's okay to put yourself first. I've stood at the edge of the Abyss with the universe pushing me, pressing me against the edge, laughing as I slip on the weakened earth beneath my feet. And as it pushing me toward the deep end, the my bottom, I've learned one last thing about myself. I'm stronger than I ever thought I could be. And I shouted at the universe “NO! You can't have me!”

Writing is what saved me from losing my mind, from letting the weight of the problems overwhelm me and victimize me. Twice this week I've heard myself saying or thinking, “We write our own story. ” Literally and figuratively that is. Granted life has a funny way of shoving us down certain paths, but what we do with these changes, is up to us. We write our own story.

My Life – My Passion is the Written Word

I write. It is my priority. It is my love and it is my passion. Someday I hope to do this as my living, not my “hobby” as I learn how to find a fan base big enough to allow me to live my dream. And what I've learned about that is, “You must never give up.” It's that drive, that desire that has kept me grounded, that has made me a better mom, a better person. It builds my confidence, it makes me whole. It is what keeps me from falling off the roller coaster when it whips me around.

This is my life for better or for worse. And I've made my choice on how I write it. The glass will always be half full as long as you have the confidence in yourself to make it so.

See the glass as half full and find me at the following book fairs, Summer, 2017.

Printer's Row Lit Fest

Ann Arbor Book Festival 2017




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The Art of Publicity

Publicity Isn't About the Books

I've been around for seven years, tirelessly working to bring my books to the public, share the stories I love so much. Find a platform that inspires others and garner a bit of publicity.

As I worked with a publicist to bring my new book to market, she became aware of a new angle to find an audience. I had an opportunity to write an article about one of the most difficult times in my life; the death of my daughter. It is an emotional experience that I'm willing to share with others, because I have a unique insight. It's also a form of publicity, one in which I benefit in unexpected ways.

The article really wrote itself. Words flew from my brain and out my finger tips and on to the screen. I was nervous to open up and put it all out there, but I did it and it reminded me of the struggles, of the love and of the loss.

This is about turning tragedy in light and love. I put it all out there and opened myself up, freeing myself.

I had no idea in my quest to get noticed, would be helped by writing what I knew. Faced with my past and the memories that linger was a welcome pit stop on my quest to write books for a living. I got something so much more.

It was a story that needed to be told. Memories, feelings, scents, so vivid when I retell the story. I needed to finally stand up and speak out and tell the story.

Lessons in Life

There's so much more out there, and not so much time. But on the anniversary of my daughter's death looming closely, I realize that I shouldn't hide what had happened, I should embrace this as part of my life, and yes, even use what I've experienced to help sell books.

It is what shaped me and makes me who I am. All I can do is open up and let it all hang out.

Find me in cyperspace at the following links:

Modern Mom: Of Life, Loss and Finding Joy Of Life, Loss and Finding Joy  Black Market Review


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International Women’s Day – Why it Matters

Because Women Matter

We are wives, mothers, single women, human beings. We go to college, work full-time, play sports. We're artists, CEOs, writers, maids, data entry clerks, stay at home moms. We are caring, we are strong, we are relentless, we are tough, we are soft. We are all these things because once upon a time there were others like us who could not be.

There was a time, when it was expected that we would become wives and mothers, unable to own property or get credit, or work outside the home.

But today, my friends varied in their interests. We are teachers, body guards, office workers, writers, social workers, architects, planners, thinkers. Most have children, some have chosen not to; others could not.

I've met women survivors of rape and incest, mothers who buried their children, women who rush through life involved in the constant care of children with physical limitations or mental disabilities, and women who give up everything to care for loved ones hundreds of miles away from their home and life.

Women matter, for all the contributions and sacrifices to those we love. We matter for the choices we've made and for the choices that will still need to made. Women's history month reminds us that we as a collective have power, we as individuals have strength. We have come a long way from a time when we couldn't own property, vote, get credit, go to college or play sports.

This is my remembrance of those who came before me, who fought for my right to my health, to my career. To the artists, writers, suffragettes, ordinary women who took a stand, were beaten for their beliefs, tossed in jail as punishment for speaking out. Susan B. Anthony, Sandra Day O'Connor, Sally Ride, Lucille Ball, Rosa Parks, Margaret Mead, Serena Williams, Judy Blume. So many I have no more room.

For more inspirational women see he National Women's Hall of Fame:

And lastly, this is a love letter to my girlfriends. We share our struggles, we support each other, we celebrate and cry together. For without all of my lady friends and not so lady, very salty friends. My shy gals and outgoing leaders, remembering women of the past and speaking up for the future is important to us and legacy we leave to our children and grandchildren.

Be kind, be full of love.





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Motherhood Uncensored

Written on the ink pad app on my phone, while waiting for the doctor. All that's been changed are spelling errors. It's time to say what I need to say.

tired mother

It's not a fight I wanted to get into. I didn't want to gear up for more trouble, problems, and issues. Yet somehow I am.

We can say we want healthy children, normalcy, and a happy life. Smart, productive children, good in school and we'll raise them to be self-sufficient, and confident.

Looking back on the carefully formulated plan, I offer a snort of derision. It's complete and total bullshit. Because sometimes life just doesn’t cooperate.

After 2 1/2 years of infertility, and a miserable pregnancy, I gave birth to twins. It should have been joyous, it should have been my reward for the struggle of trying to get pregnant. It was bittersweet. It was a nightmare. ‘Now what', I asked myself when baby A was born with a terminal illness. With one healthy baby and one not, I entered into motherhood under the worst conditions you could imagine.

There’s no worrying about raising confident girls, there’s only the daily struggle of keeping a child alive, of rotating nurses, doctor’s orders, do not resuscitate orders and hospice care.

When a child dies, you have 2 choices, step on the new path with your new life and the knowledge of what it is to bury an 11 month old baby, or you can lay down and die. I still had a baby to care for.

As I raised my twin less twin, I did it wracked with guilt. Did I do enough can I be enough?

I still couldn’t follow the plan because that second child had her own battle. Another fight, more advocating for my child. Debilitating anxiety, ADHD. Having to hold the hand of a child old enough to do for herself, fearful that adulthood, which one day will come, will render her incapable. A constant battle to raise her to support herself, handle a job interview, live on her own.

It’s not the usual and its exhausting, stressful and makes me numb. Joy is lost because the little things are big things and there are always issues.

My youngest daughter was my easy, happy-go-lucky kid. The one who found joy in everything. The cool kid who listened to 80s music on a record player, loved comic con, and simply allowed normalcy. Until it wasn’t normal anymore.

She came out as lesbian at 13. I told her I love her, it will be fine. If only that was the end.

There was pain behind those eyes, masked by a laugh. When you fly out of work one day because the nurse calls to tell you your daughter wants to commit suicide. The pain was there and she hides it well. The cutting up and down both arms is hidden by long sleeve sweatshirts in the middle of November. Depression drugs and outpatient programs are arranged and decided.

The storm at some point had to end.

oceanOr so we think. I’m so tired of the battles. I’m so tired of the doctors, the pills, the planning. It keeps me up at night because someone has to control it. That is me…mom.

It’s not over. It hasn’t really started. This newest battle I’m just embarking on. The one that my daughter feels, she was a boy all along.

I will never understand. All my weary brain sees is another problem. Another battle, this one, I dread. I know what’s coming and it isn’t easy.

Transgender. My kid. My world, as it implodes in on itself, I struggle to stand, to understand, to keep walking forward to the end of another tunnel.

It’s not about me, it’s never been about me and yet it is always me. What I wouldn’t give to simply raise my kids to be strong individuals, confident and happy.

Funny how somewhere in the midst of all of it, they finally are.



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Defining Moments

When my daughter died she was eleven months old. It was time for her because her tiny body was no longer able to sustain itself, to breathe, to process food, to laugh or to cry. She was born with broken muscles and for a time, she appeared to be getting stronger, but then as we knew it would happen, her muscles degenerated, weakened until they could no longer do what they were meant to do. She died at home as we wanted her to, safe and loved.

Her death didn't haunt me quite as much as the moment, that one single moment when I went from realizing that my harrowing pregnancy was over and knowing that there was something seriously wrong with my child. It was a period of time shorter than what takes me to blink or to take a single breath. But that piece of time, small and unnoticeable where I went from feeling joy to asking the question “Now what?” It was long enough.

I was defined by that moment, I obsessed about it for years after she died because I didn't understand how everything could go so wrong. It made me angry, it made me cry. I poured everything I had into remembering that moment. It was torment.

Allowing myself to become a victim of that moment effected how I conducted my life. It weakened my resolve, it made me not want to experience life, because to live and experience opens you to hurt and sometimes to hell. I didn't want to experience anything like that again. It took many years for me to realize that remembering and letting that single moment in, examining and reliving it, held me back. With time, I could see that it was a bad memory to cling to. I needed to let go.

Saturday night was the Yahrrzeit of my daughter's death. We honor that memory every year, recounting her life, ensuring that her short time on Earth mattered. I think about her every year and for the longest time, I could only dwell on that single moment thinking that would be my memory to her. But she isn't about that second of time and either am I. Now I chose to remember her.

But that’s the thing about defining moments. They will either define us or we will define them. You can either be a victim or you can take charge of that moment. I lived the last decade and a half as a victim of circumstance and let my circumstance rule me. I no longer let that happen.

I took the job that I did, this sales position that makes me uncomfortable, because the only way to battle fear is by simply overcoming it; making the phone call before you chicken out and find something else to do. I will no longer be defined by that single moment in my life. I’m far more than that moment. – Introvert to Sales Goddess

That comes from my book Introvert to Sales Goddess as I examine what I'm fearful. My fear, my lack of confidence, my inability to move forward was partially tied to that single moment and possibly other single moments in my past. We should never be defined by those moments. They are part of our make up but they aren't wholly us. I don't think about that moment the way I once did, it no longer fills several waking moments, it no longer haunts me in my sleep. I've moved on from the moment finding me in my waking life. Though it doesn't haunt my dreams, it did affect how I went about the business of my day-to-day life.

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Who I am and Why You Should Listen

My name is Sheryl Steines. I'm an introvert, I'm a mother, a wife, a friend. I'm also a survivor. I wasn't always a survivor. I used to be a victim of my circumstances. As good as my life might seem on the outside, and I'm not saying that things haven't been good, behind the scenes, well they've oftentimes been one bittersweet, emotionally devastating event after another. Failed job hunts, infertility, a hard pregnancy, caring for a terminally ill child, post-partum depression. They came at me in rapid succession. I couldn't breathe. With each new experience I would ask myself now what and blindly wind my way to the solution. I didn't survive those experiences. I merely passed from one to the other until I was an empty and all I could say was, I was a victim of my experiences.

When you feel as though you're living in a whirlpool you can't quite stop and take time to figure out what it is you really want to do with the rest of your life. Lost and confused, unable to keep a job in interior decorating, I had to look long and hard to figure out that what I really wanted was to write. From the time I was seven, that was my wish, my end goal and making that decision I made a change that changed everything.

Writing gave me a voice. Allowed me to express myself and explore what I buried deep inside. It gave me confidence, I lost weight, I straightened my hair. You get the picture. It was the single greatest decision I ever made for myself.

The writing's been wrought with challenges. It hasn't gone as I expected. But it saved me and thought I didn't sell as many books as I hoped, I had to get a job to pay for the marketing, I'm so stressed out that I fail at work and at home and with my friends, I persevere. I'm no longer a victim of those bad experiences. They shape me but they don't define me. I'm not just a mom who buried an eleven month old baby, I'm a woman who picked up the pieces and found a voice one that I can use to inspire, listen or help someone else get through their own hardships. Instead of hiding in fear of those experiences I'm choosing to grow stronger and redefine who I am. I've learned a lot about myself as I've taken on the challenge of writing a book series and I discovered that I'm so much more than I gave myself credit for. I fight and I defy odds and I move forward without apology. And I'm sharing myself, opening up and exposing everything. Because I do have a voice and I do have something to say.

That's who I am and if someone else, just one other person finds strength or acceptance, than the pain and tears will be worth the effort. Look for my new book chronically my experience as an introverted sales person called Introvert To Sales Goddess, coming soon.


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The Lost Decade

Some of my frustration with the past few months is the realization that I'm 45 years old and life didn't exactly lead me down the path I wanted. I know that life isn't fair and it doesn't always work out, but I know exactly why I was derailed and when it happened.

One think I've learned about myself since becoming a legal adult is this, I actually handle real stress, not the perceived stress, but the real kind, pretty well in the moment. I'm one of those people who can let it roll off my back and find a way to move on. Or so I thought.

My real issues stems from two lengthy stretches in my life that really beat me down. The first was four years, the second was five. They weren't of my own making but they were thrust upon me, by life, this chaotic existence that sometimes we have no control over.

Like a lot of married couples, we had a plan, five years, save a little money and try for a family. I kept up with my end, worked for a while, we bought a cute house and saved quite a bit. I even traveled and saw many places that I had always wanted to visit. I tried to get pregnant. I couldn't and so that threw me into a four-year tail spin that included infertility, a horrible pregnancy with two hospital stays and an eleven month period of caring for twin girls, one of which was terminally ill and would die.

Don't pity and don't feel sorry for me. What this became, was my first life lesson. I'm strong enough to survive it can I now thrive. I thought I had grieved and moved on, but sometimes the scars we receive from these horrendous lessons aren't visible with the naked eye, or they just don't appear until later, until long after you've had a chance to really see what had happened or you struggle with another stretch of crap.

I had a year after my daughter Stephanie died in which to pick up the pieces and move on, though any parent who has lost a child knows that you never really do either. It's always a whisper in the background and it always haunts what you do. But I did have a mourning period before the birth of my third child and with her birth, I thought I was onto the happy ending.

It comes at you all at once, a surprise that isn't a present. I had an easy pregnancy though I was nervous the whole time, nervous that she would be born with the same undiagnosed condition. It wasn't until I felt her move at 18 weeks that I relaxed, though only some. And the pregnancy was easy. I slept, I ate, I went out and I lived my life. No hospital stays and really the only time I spent at the hospital before she was born was because the carbon monoxide detector went off at 1 in the morning. All that was required was a stress test, just in case.

But I digress, into other areas, because where I really wanted to focus on was the five years after my daughter was born. The five years that I plunged into new territory. You hear about it on the news all the time, women with post partum, killing their children. I didn't realize for 17 months that was what I was feeling. It was depression, and the inability to function at daily living. I dieted and ate better, exercised six times a week, went out with friends but it wasn't enough. It was merely myself going through the motions, pretending I was still human.

They give antidepressants for post partum, which I'm not opposed to. I took them and for five years, I managed to do the laundry, grocery shopping, care for my kids, in this relative haze, not really feeling, not reacting emotionally, just existing. When I finally could stand the lack of feeling, and realizing half a mom did my children no good, I asked the doctor to take me off.

I lost weight, I straightened my hair and really what I did was wake up at the end of my thirties realizing the entire decade had been lost to the empty void. I was a shell of the person I used to be. I was afraid to take my kids to places, to go out, to speak my mind, to share my voice. It wasn't until I turned 41 that it all hit me. A vivid map of my life and the trails and stops and shortcuts, and mountains that I had to climb to get to where I was. It was long and difficult and I decided it was time to dream again.

Do something that I had always wanted to do. And that was write. I didn't want to merely survive The Lost Decade, I wanted to thrive and live and come out on the other side of the mountain as queen of the world. Bang my hands against my chest and yodel and let the world know, I'm still here and I'm fabulous.

I never sugar coat my journey as a writer. It's been hard and it sucks, but I learned the lessons from my past and what I've really learned is you can keep throwing things at me and I will remain standing. I'm still here and I'm still trying because I finally decided to believe in myself. It hasn't been easy and I've threatened to quit several times. But because of support of editors and marketers I've finally managed to find my voice and my path. I wish I didn't have a lost decade. I wish I could fondly look back on my thirties as a remarkable time in my life but it's merely a bittersweet time, a time of deep sadness, pain and joy. But it is me and it is what makes me. I couldn't imagine now, having it any other way.

So I can't reclaim that decade, but I what I always do well is move forward. So here I go. Here's me moving forward, still afraid but ignoring the fear. I'm going. See me, see me fly.

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The Bad Stuff Becomes the Good

Why do we only dwell on the bad stuff that happens rather than the good? Well in my case it’s probably because there’s been so much bad. And each one of those bad things, I seem to have ended up on my feet rather than in a pit of despair. So why can’t I concentrate on those victories, because there have been many.

Though I watched my daughter survive an undiagnosed disease which she eventually succumbed to after eleven months, I have the choice to dwell only on her death or I can bask in the success I had during her life. Organizing a large nursing staff, prescriptions for narcotics (they’re given in triplicate), dealing with insurance, coordinating hospice, taking care of a healthy twin while doing all of this and living through stress and in the end, I gave her the best life I possibly could.

The point isn’t to applaud myself but to realize that sometimes, even when things are at it’s worst there might be something to take pleasure in or to be proud of even under extreme circumstances.

I must remember that when I feel myself a failure because the books are selling at all, or I’m having difficulty managing Twitter and the blog and my author Facebook page. I can’t just congratulate myself on the fact that I’ve written two books and have two more nearly finished.

Should I do that though? Simply accept that I accomplished the minimum and move forward. Or maybe what I should do is let my frustration fuel a desire to keep pushing, keep writing, make my books the best that I can so that maybe, all the hard work will eventually pay off and I can live the dream that I set for myself.

I think that in the end that's what it’s all about. Accepting who you are and the accomplishments you have made while still striving for even more. We should always set our limits higher than we think we can go.

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