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.Continue reading
Anxiety isn't just something you can “Get over,” or outgrow. It's fear of the unknown, it can create low self-confidence and the fear grows more fear. It's just that … anxiety and if you don't have it, you just don't get it.
Though there's medicine that can reduce the stress, and therapy that can teach how to live with anxiety, what I've learned from raising a child with severe anxiety is, it just doesn't go away. No amount of yelling, screaming, or rationalizing with your child will accomplish anything. And trust me, I've done it all when dealing with my kid, because my stress level grows when I can't get her to do simple things, like be outside in the wind, or ordering a sandwich at the local Subway.
My daughter became a legal adult at 18, that was 1 1/2 years ago. I didn't expect the anxiety to go away, but I was hoping with some maturity, she would be more willing to help herself learn how to live with it. But now what I'm dealing with an adult who has anxiety. She's just as stubborn about what she won't do as she was before, but now I have some loss of control over certain situations.
Have you ever tried to talk to the doctor on behalf of your child and you can't because guess what? They're now an adult and the doctor legally can't tell me anything without permission from my kid. It's like beating my head against the wall.
It really wouldn't be an issue if said child felt comfortable speaking to others on the phone, which she doesn't, because you know why, anxiety. So what do you do when one doctor wants to sent your child to a specialist for a suspected issue and the billing office of another doctor needs to speak to your child and they won't even hint as to why. .
AS with everything with my child with anxiety, I'm looking for answers to help assist without completely letting her get away with not advocating for herself. I'm looking to create a legal document that gives me permission to speak with doctor's offices. If anything it should alleviate some of my stress. When possible, I do make her call and give permission, but sometimes, when I'm not there, she choose to be obstinate.
Yeah, its frustrating, annoying, drives me crazy but this is who my child is. I can only do the best I can to make her and my life easier.
It takes a lot of compassion and understanding to deal with what you don't understand. Some day I hope she remembers all I did to give her a good and full life, not defined by anxiety. One day I hope she finds a way to live with the anxiety so it doesn't rule her.
We picked all these items before school started in hopes they would ease my daughter's anxiety about going away to school. And now her dorm room full of crap sits in my dining room, scattered across the floor and table where it was carelessly placed after unloading the SUV. The piles of junk spilled into the living room, the final car load needed a place to be stored. A final piece never left the kitchen where it takes up valuable walking space between the island and the refrigerator. If I don't break soon, it may stay there the entire summer. Probably not…but you never know.
I've raised a highly anxious child for 19 years. I've dealt with a child who was barely able to talk to her teachers, who suffered from ADD, who was severely fearful of the wind and felt anxiety that was blinding and debilitating. She's endured therapists, bad teachers, social workers, psychiatrists, all in the attempt to help her achieve some sort of normalcy, so that she could at some point in her life, live as a functioning adult.
Three weeks before school started, she endured wrist surgery, an injury sustained during Tae Kwon Do testing when she broke several boards at the same time. After x-rays and physical therapy, there was no relief and surgery was the next option. My daughter's first test as a functioning adult would be physical therapy on her own while away at school.
I worried when the first night away ended with an upsetting text and a phone call with my child on the end of the phone line crying, already not liking college, and it was still only Freshman orientation. I could feel the anxiety through the phone.
She wasn't talking to her group, she wasn't speaking to her roommate.
I sighed. It would be soon. She'll get the hang of it.
I helped her through her first physical therapy appointment and held my breath when she went on her own. And each time, it got easier, not just for her but for me as I slowly let go. It could only get better.
I could only hope with a little time, with a little patience and experience my daughter would realize how far she had come. She was for the most part, living on her own, she handled physical therapy like a pro, she even drove herself home on several occasions, making her way through unfamiliar territory. I was proud of the challenges she overcame all the while, the anxiety still present and real. She couldn't see past it.
But it didn't last.
Her roommate was mean. Complained of a weird smell, blamed my child as if she wasn't showering. My kid who took 30 minute showers on a regular basis, began to doubt herself. People would comment about her behind her back while she could hear. The roommate moved out.
It shattered my kid. She never ever had anything quite like this happen to her. My heart broke for her as she called me crying, others in the hallway were making nasty comments.
But she persisted, she didn't give up and continued on with the second semester, reveled in good grades and was invited to the smart kids fraternity.
There was so much to be proud of.
She has severe anxiety and possibly OCD, issues that can hinder if you're not willing to do something about them. She saw a therapist at school to help with the roommate issue, I reminded her several times how far she had come. And in the end, she was willing to make things better, try to overcome the OCD and ADD and make an effort. She joined several clubs and even forced herself to go to meetings.
She started to think about a major, a minor, a possible career. But she still has anxiety. And as much as I want to toss the little chick out of the nest, I can only do it in small increments. She's just not quite ready.
And that's my job. Continual support of my child as she continues to grow and change and adapt. She will always have a home to feel safe in. A place to hide from the world, to soak in as much love as she can in order to face the harsh realities outside the front door.
I have high hopes for next year. She has clubs to join and will be rooming with a good friend who will be attending the college with her in the fall.
It's never easy, but each step is confirmation that we're in the right direction and someday, the little chick will be tossed out without realizing she had been.
On March 29, 1999, I watched my daughter Stephanie Paige Steines take her last breath. She was born with a neuromuscular disease of unknown origin. It is something that stays with you the rest of your life, only time makes it hurt less; I no longer cry starting a month before her death, and that day, sometimes it passes without recognition. I always remember though.
While her health deteriorated, her muscles became weak, her breathing difficult, her eating nearly impossible, I had a weird dichotomy of experiencing the other side, the wonder of her twin, my daughter Kayla, as she grew stronger, hit her milestones, thrive.
But with each milestone achieved, there was something not completely right, there should have been two reaching these ‘normal' goals.
There was always a whisper of sadness through everything that Kayla did and though I promised myself that Kayla would never have to live her life because her sister died, she'd only have to live her life because Kayla was, the whisper, the hint, a piece of the whole was always there.
I hadn't realized Kayla experienced that emptiness until almost 17 years later. Seeing other twins at school hurt, she wanted to scream out, “I'm a twin too!” I will never forget the time I was in a room with four other adults, and three of us gave birth to twins. As the two moms spoke of their twin issues, I wanted more than anything to chime in. But to talk of the loss carries a dark cloud over the conversation and it's not always the right time or place.
The loss is not just my loss, it's also Kayla's. Even though she were 11 months old when Stephanie died, we both feel it especially during great achievements, a great moving forward, always knowing, someone else should be there too.
I feel it now as Kayla is ready to graduate high school, as she's ready to enter college. I'm not just sad because my baby is all grown up. I'm sad because we are missing someone.
There is so much pride for all Kayla has been able to accomplish. Overcoming crippling anxiety, scoliosis, ADHD. She's graduating with amazing grades, a high ACT score and was accepted into three colleges. She'll be attending this fall on her way to full adulthood.
Time makes it less difficult and there are less tears, but it can never wipe away the sadness. I only hope I can make through graduation without the ugly cry.
The high cliff overlooks a river that snakes through the countryside. It’s nestled into the valley, covered in trees and the water, it beats roughly against the rocky coast. I stand on the highest hill, a silent observer to the water as it splashes and swirls before dropping several feet into that whirlpool at the bottom of the waterfall.
The water churns, and undulates, alive with pain, anger, love and loss. Each harsh wave erodes the rocks, removing a piece forever. Mom she’s gone. I hear myself say that over and over again in my head, on a loop that I can’t shut off. My voice lacks all feeling, a reflection of my true self, because it was one more piece of news than I can’t absorb, interpret or accept.
WIP 2016, Sheryl Steines
I've been afraid of deep water, (I'm 5'3″ so it doesn't take much), since I was six years old. Before six, I had no issue with the water, stick me in a blow up ring and let me float on by. At six, I took swim lessons, in a lake. I will never forget the day we jumped from the floating dock into the water, water that was definitely deeper than the top of my head.
Not the first one in; I watched others jump in; it seemed that the others before me, were immediately lifted out of the water to sun dry on the wooden dock. When it was my turn, I jumped and stared up and through the greenish, cloudy lake water, I could see the sun in the sky and I remember thinking, “When am I going to be lifted out of the water?” I panicked, the panic seeped inside and from that time, water was the enemy.
I've taken swim lessons at an adult, trying to allay those fears, not wanting to pass them to my children, but the fear and anxiety is so deep within me, I've given up hope that I will ever enjoy the water.
I've been writing poetry and essays of late, writing my memoirs in a way that's pure emotion as I discuss the life I've led so far and why it might be important to another person. My theme for the bad times seems to be the churning water. How it pulses, undulates and suffocates, much like I feel when I'm in a large body of water.
JK Rowling wrote about her depression in Harry Potter through the dementors, the life sucking creatures that ate your souls and left you as merely a shell, much like depression does in real life. She didn't write a literal interpretation, choosing instead to give you the image, in a beautiful, grotesque way.
Water, for me, is the perfect representation for the emotions that envelope me through several past life experiences. It swirls and comes alive and batters me against the edge of the lake.
Eventually the water will flow down river into a quiet pond, but right now, it undulates, rumbles and terrorizes.
I work on my autobiography because I hope, someday, somewhere, someone will read it and gain perspective and a sense that in the end, it will get better. The river eventually ends.Continue reading
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.
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.
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.
Paralyzing fear and anxiety is when you are so overwhelmed, so terrified by something that you run and hide. I suppose this isn't such a bad decision say if you wanted to climb Mt. Everest in the middle of winter. But it does become a problem when you refuse to hang out with friends because you're worried.
We take it for granted the ability to call our friends on the phone, to text them, make plans with them and just hang out. But there are fears of being embarrassed, saying the wrong thing or not having anything to say. Ironically this shy child can stand in a room with hundreds of strangers and deliver a speech without stumbling and with correct inflection in her voice. Go figure.
Fear is about preconceived beliefs we have about ourselves. The key is breaking them apart, learning that they're false and recreating our ideas about ourselves. You can convince yourself all you like that you are happy being alone, but if fear and anxiety is the real reason you are alone, then you're lying to yourself. And the journey is far more fun when you can share with someone you care about.
For my daughter to overcome her fears we work on something called Exposures. They are opportunities to put her in the middle of what frightens her in order to grow comfortable in the experience. Whether that be driving, ordering a meal at a restaurant, or making plans with friends, we try to put her in uncomfortable positions in order for her to learn how to navigate through them.
We do this with all things that cause her to be uncomfortable. Every experience that she will have to live through as an adult, we put on a list so that we can give her the experience and grow comfortable with every day tasks and functions. Driving becomes easier and less scary, ordering food at the sub shop second nature. It's hard to walk beside her making things difficult for her but in the end we know she'll be far better at dealing with her life than if we didn't.
She understands now why we are doing what we are doing. She has become a less reluctant participant in the therapy because she knows someday she'll be going to college and getting a job. But she still has those fears of not knowing what to do. It's blinding and scary and she still believes she'll be okay without friends. It's the hardest lie she tells herself for us to break down. She's convinced herself she doesn't need friends, doesn't need to spend time with them and that she's okay. I worried me because what I know about human nature, what I've learned is people need other people. We need a good support system, people who care about us, people we can care about. People who are the happiest have a good social network. And as I keep saying it's not about having fifty friends and going out every weekend, it's about having friends you feel comfortable and share things with.
It's been a long struggle to get to where we are with our daughter. One day I hope that she will be able to initiate even just a text and invite a friend to go out, to a movie, to the mall or just to hang out laugh and share. One more small step towards a life without debilitating anxiety and fear. That's what I wish for my daughter.
She no longer throws temper tantrums when we hand her the keys to the car. Her voice is clear and thoughtful during sessions with the therapist, as if a light bulb clicked on inside her head. There's now a comfort and understanding that comes from the therapy and with time and practice it lessens the anxiety.
The anxiety, I'm sure, will always be there. That's not the goal of the sessions. The goal is to give her the opportunity to live her life as fully as possible. She's understanding how to recognize the unrealistic fears and to accept her homework, exposing herself to what frightens her.
There are no easy fixes, no cure-all pill. There's only a lot of little steps, tweaks to behavior that reduce the stress associated with the things that we take for granted. Will she be able to grocery shop and ask for help, explain to her doctor what hurts, ask her professor for clarification, find someone to have lunch with?
Taking in the whole picture is like eating an elephant in one bite. It's too big. But by breaking down the problem into manageable pieces to work through, with consistent practice, is the only way to break down the walls.
One problem at a time, whether it be driving, we make her do it more often, or order her sandwich at Subway, I always make her go in by herself. Because practice breeds familiarity which lessens the anxiety.
I hear in my daughter's voice it's stronger, less tearful, honest, with me, her father, her therapist. She understands why we're doing this, this intense training to overcome certain anxiety. She's no longer a reluctant participant. Though it's still not easy, it's manageable and that makes it worthwhile.
As parents we live with guilt, we wonder if what we do for our kids is the right thing to do. When our kids are struggling it pains us, we put a protective arm around them and try to make the pain go away. But what if we hold on too tight, if protecting them stunts their growth as they near adulthood?
I had thought about that, about my daughter's crippling anxiety. We held her hand, we protected and kept from certain experiences that made it difficult for her. Over the course of the years we added anxiety medicine, ADHD medicine and therapy but what about really putting her out there so completely that she has to feel the fear in order to overcome it.
It came about when I realized she had two years left of high school. I thought, will she be able to talk to her professors, her boss, other classmates. After realizing she had convinced herself it was okay to be alone, she'd be okay, we took the drastic action to reprogram how she thought about herself and the life that was possible for herself.
They're called exposures opportunities to fear safely. We started this on our own though we didn't know it. She wanted tuna from her favorite sub store, she had to go in to the store and ask on her own. But with the bigger things, we were stumped. How to make her drive, how to convince her that not going to college is wasting amazing grades and experiences. But after a few sessions with the therapist, someone other than her parents to fret, cajole, yell and scream, we had a breakthrough of sorts.
For the first time, she could put her fear aside for just a moment and realize that college, she could do it. There are options, she doesn't have to leave home. She could start small at the community college and work her way in. There are possibilities and the world is too big to not experience it. I could have cried, gathered her in my arms and kiss her, but I didn't. I knew then that pushing her out of her small comfort zone will wield benefits that neither of us can forsee. And as she gets older and more mature, maybe someday she'll thank us for not giving up on her.
She makes faces when we ask her to drive, she runs and hides if its time to text a friend. I worry about the future of my daughter, the smart and funny girl who no one realizes is smart and funny. It's because of crippling social anxiety. It occurred to me this summer that she only had two years left of high school and then it would be college and job interviews and moving away. I began to wonder, had we held her hand too long? Is it time to push her out of the nest, let her stumble and fall with our open arms waiting to catch her?
My goal isn't to have a child with 50 close friends. My objective is to make sure she's able to speak with her teachers and professors if she has an issue, to be able to walk into a class and find someone to sit and chat with, to go on a job interview and deal with her boss should something come up. Sometimes we're programmed to be able to handle these relatively mundane activities and sometimes, fear grips us and we're frozen.
Whether she admits it or not, she needs to be pushed. She needs to not make any more excuses as to why she can't do something. And she should no longer be able to tell herself she's fine the way the situation is, she doesn't need any friends. I know she's lying. There are those times she's upset she wasn't included. She gets angry when she thinks she should be in Honors classes and isn't. Deep down its there. And as a parent I know what's coming.
It boils down to the desire to not grow up. To remain a kid forever. But we all know that's simply not possible. The kid gets great grades, works two jobs, is a black belt in Tae Kwon Do. She's almost already there and yet her preconceived ideas block her from moving forward.
Medicine isn't the only therapy for someone with severe anxiety. We learned that pills can only do so much. There's a rewiring that needs to go on, and learning and understanding that fear is nothing but the lies we tell ourselves. She tells herself plenty. And that's why I've chosen to be the mean mom, force her out of her comfort zone and make her face the things that scare her. She will learn one of two things: the first is, that wasn't as bad as I thought and I was being really goofy or she'll learn how to live with the anxiety and learn to maneuver through it so that she doesn't end up alone and hiding in her house with twenty cats.
I keep telling her life is more fun if you share with friends, if you go out and experience anything. She still doesn't believe me. I hope someday she'll understand. Reluctantly she's been trying. She's been texting, we've had her driving. It's a struggle, its work, but in the end, my goal is to raise a child who can live in the world, understand what frightens her and hopefully she'll have those magical tools in which to pull from to help her through what's hard.
It breaks my heart to throw the kid out of the nest, to watch her tear up when it becomes uncomfortable, but after some time, I know, I'm not here to be her friend. I'm here to be her parent. I still know what's best for her. And whether she likes it or not, adulthood is looming around the corner. If I dig my heals in a little deeper than her, she'll be alright.
I’m an introvert; the type of person who if I have more than one scheduled event in a day, I’m not happy. It’s not because I hate doing things, it has to do with needing down time; time to recharge, to refresh and to get away from people.
As an adult I realized that I’m responsible for adjusting to situations that render me anxious. I can either hide from those experiences, or I can face them head on. Knowing this, I recently took a job at a small firm in which I was to sell a service to members. It was such a departure from the types of jobs I normally take that I wasn’t sure it was the right path for me. I’ve always hated speaking on the phone, I need visual cues to adapt my conversation, but this job, I lost that and talking on the phone is generally stressful for me. But I’m adult and I realized that the only way I can gain experience and feel comfortable was to make myself uncomfortable.
I took the job against my better judgment because I’m 46 years old. I have more experience, more live behind me and most importantly, the desire to make a change. But what I really have is a 16 year old daughter who I recognize in her, all of my struggles. And as I live through them once again and for my daughter, it breaks my heart.
Over the next few weeks, I’ll be sharing her struggles as she works through her fear and anxiety. The goal is to help her grow into a functioning adult and learn to enjoy her life, not hide from it. I recognize me in her and as a parent; I want her struggle to not be as hard as mine was. But when is the right to let go of our children and push them out of the nest?
We decided it was time to make her uncomfortable, to bring the fear to the surface and retrain her thought process on anxiety and fear, reconditioning her to learn what she needs to take a step toward what makes her scared. She doesn’t like it; it’s hard to watch her cry and fight it, but in the end, it’s my job to help her reach adulthood as happy and healthy as I can.
She may not like me now, but I’m hoping by the time she reaches adulthood, she will at least see that the emotional pain was all worth it. We aren’t always able to go against are basic personality. My daughter and I will always be introverts. All we can do is find a ways to deal with it so that life is better, more rewarding and fulfilling.
Sometimes raising kids is really hard and we have to do things that break our hearts, but in the end I know for my daughter, she will come out on the other side stronger than she started.Continue reading