Written by Jessica Patay, Founder/Executive Director, We Are Brave Together
Do you see us?
We are the parents who have always parented in an altered universe, and now we are being asked to live in yet another altered universe with no end in sight.
Do you see us?
We are the parents whose children highly depend on structure and routine to feel secure and safe and less anxious.
We are the ones who need a multitude of people to support our child’s ability to learn, to play, to speak, to toilet, to eat, to walk, and to participate in the school day.
We are the ones who have NOT been trained in special education, occupational therapy, physical therapy, feeding therapy, sensory therapy, equine therapy, speech therapy, art therapy, and music therapy. Nor do we have degrees in behavior modification or applied behavior analysis.
Do you see us?
We are the parents who rely on others to help keep our children stable, secure and safe; not running away, or harming themselves or others.
We are the ones who rely on specialists to teach our children how to talk, behave, how to be in community with others, how to take turns and play appropriately.
Do you see us?
We are the ones whose children have been made to feel as if they are not a priority in our school systems, state systems, and in our culture and society.
We are the parents who are not worried about threats to our child’s education because we want them to get into college. This may never be an option. We simply want them to be happy, learning, growing, and around patient and compassionate peers.
We are the parents who watch the neurotypical children in the family suffer because of the overwhelming needs of their siblings with disabilities, as 24/7 life at home is suffocating and exhausting.
Do you see us?
We are the ones who make 100 decisions every day. Because our children cannot.
We are the ones whose children will not grow up and move away and live fully independent lives. Ever.
We are the ones who are desperate for breaks from caregiving. Desperate.
Do you see us?
written by Susanna Peace Lovell
It’s funny how the universe works. You think you’ve finally mastered the spiritual practice of knowing (like, really knowing) that you are worthy and enough, exactly as you are. You’ve invested in myriad forms of healing and self-care: meditation, yoga, reiki, crystal work, body and breath sequences, sound bowls, mirror work, daily morning prayer rituals, intensive spiritual counseling, traditional therapy and more. You spend hours journaling about your feelings and insights. You participate in workshops and retreats on how to become your best self. The amount of self-help and spiritual wellness books on your shelf are enviable. You’ve subscribed to the Oprah magazine since its first season. YOU’VE GOT THIS.
And then. Then you become a mother! You’re prepared for this day, as it’s the biggest dream you’ve had for yourself since you were a little girl. You have lots of siblings and tons of practice. Kids have always naturally gravitated to your nurturing energy and you have a lovely babysitting side hustle as a teen. You know you’ll be the best mom with the most amazingly well-behaved little mini me – in fact, you’ll have a version of your very best self on your very best day! You can’t wait to feel the impact of your amazing parenthood as your child shines while you nod your head proudly in her direction. You can’t wait to pat yourself on the back for creating this angel. YOU’VE GOT THIS.
Well. Adjusting to new motherhood is a little more challenging than you thought. Baby Arizona cries. And cries. All day, every day, her piercing cries filled every lonely moment. A nagging feeling starts to creep in as the months crawl by. “Maybe it isn’t just colic?” you think out loud to yourself. Surely things will change soon. The pediatrician says so.
Sleepless nights become more prevalent for you, even as Arizona learns how to sleep through the night. You’re puzzled by heightened anxiety that won’t allow your mind to settle. “What’s wrong with me?” you think. “Isn’t this what I’ve always wanted?”
What you come to realize in these early days is that, YES, motherhood is absolutely what you always wanted, but you also recognize your desire is for it to look and feel a very specific way. Your vision is shattered by this unexpected child. Your days became consumed with specialists that can help unlock the mysteries surrounding gastrointestinal issues, severe food allergies, asthmatic episodes and intense skin reactions. Most importantly, you find yourself spiraling into the debilitating abyss of post-partum depression hell. You are drowning, but don’t mind the thought of being swept away into the deep, dark sea – far away from this unkind motherhood.
Yet and still, you somehow keep moving forward. Arizona’s medical issues remain, but slowly, ever so slowly, you come to understand that you have a different kind of child. She just needs attention in a way that you didn’t plan for.
“It will be okay,” you tell yourself, “I can handle allergies and asthma.”
Due to all of the aforementioned health crises, experts note that your child’s inability to connect with the outside world (a new and growing concern) is absolutely due to her specific medical issues. “Don’t worry,” they all say, “Your child is developing normally, and just needs to catch up.”
Except the experts aren’t right. And just as the fog begins to lift on how to manage everything else, you get a call from your sister. “Something’s different about Arizona,” she says. You feel an immediate punch to your gut. You know she is right.
The next year brings out your warrior side. You focus on fixing this child, by any means necessary. You cart her from developmental pediatrician and neuro-psychologist visits to assessments of all kinds. A flurry of therapists become your second family. Sometimes you hear words of hope, but what sticks with you most are the words and descriptors about what your child will / can never do, and who she will / can never become.
These words resonate with your own childhood feelings of inadequacy, unworthiness, and imperfection. You were a girl who tried so hard to be loved by everyone, but continued to be met with rejection. You changed your behavior and outward appearance, away from your true self, to feel accepted and included. You swore to yourself that you would one day fit in and be admired by all. And you also made a promise to yourself that you would raise your children to also: fit in, exercise exquisite manners, present as perfect little humans to everyone around them. You had a specific mission and failure wasn’t an option.
Year Three – Year 5
The “A” diagnoses start piling in. On top of the ever present and dominating allergies, you learn that you also have a child inflicted with Asthma, Auditory processing disorder, Atypical development disorder, Autism spectrum disorder, Attention deficit hyperactivity disorder, and last but not least, Anxiety disorder.
The access to joy in your life? Gone for a long time now. Perhaps gone forever. “Sacrifice” becomes your daily mantra. What’s best for Arizona will just have to be good enough for you. Trudging forward, in the most epic storm of your life, you surrender to the notion that your dreams no longer count.
Year 6 and beyond
And then, a diamond in the rough presents itself. Fate intervenes as you stumble upon one of the biggest miracles of your life: a small and cozy therapeutic school that heals the child by treating the entire family. You are finally able to unleash your pent up sadness as tears gush freely down your face, fiercely and daily. You began to learn a new way to be with your child. Simply, to just be with your child. You learn an emotional language to help support your child, but soon realize, you are on a parallel learning journey with her. The words you learn to lean into communication with your daughter are words you also learn to use on yourself.
You begin to understand what spiritual teachers and wisdom leaders mean when they say, “Everything will be okay, because everything is okay.” It finally starts to click, that all of the years of trying to fix your child are not going to make things okay. No, things are finally okay when you realize that your child is okay. Exactly as she is, a perfectly intact soul, brought into this beautiful world to share her full unique expression and truth. All of the facades you create about yourself, to present yourself a certain way to the world, are fading away because of your child. Unfiltered and raw, truth serum flowing 24/7 – this is the child that chose you, to be her mother. This is the child who becomes your biggest teacher.
You’re here now, with a teenager in the midst of a pandemic. Life has turned upside down within the past 6 months. There are glimpses of normalcy, but life as you know it is over. Perhaps it’s a temporary situation, but you don’t want to sit around aimlessly, waiting for “life” to start back up again.
In the hardest moments, you find gratitude for all of the learnings Arizona has bestowed upon you. In your weakest hour, your child reminds you that she is a beacon of light, exactly as she is. You acknowledge yourself for creating a safety bubble of love and understanding around a child who has the tools and permission to express herself without an ounce of editing.
It is when you finally lean into the understanding that your child is not broken (and therefore doesn’t need to be fixed), that you find this truth for yourself, also. You have a child who is WHOLE, COMPLETE and PERFECT. She is worthy simply because she was born. She came into this world exactly as she was meant to. You are entrusted to be this child’s caregiver and guide in this one life. You learn to fall in love with your child, exactly as she is.
An awakening, beyond crystals and rituals and magic, has found its way into your being. You’ve had access to this healing your entire life yet it is only activated through your journey of accepting and loving your child, unconditionally. You make a choice to start the deeper and on-going work of also loving yourself, equally and enthusiastically, without conditions. You realize that you are also WHOLE, COMPLETE and PERFECT.
You are grateful for this and so much more. You vow to lean into continue loving yourself more deeply and thoroughly, spreading to all the nooks and crannies of your fragile and delicate spirit, soul, and body. You let love flow through the neglected crevices of your entire being. You wake up with purpose and connection.
And you finally find yourself tapping into the exquisite and never ending supply of JOY. You exhale. Everything is absolutely okay.
Susanna Peace Lovell is a life coach and advocate dedicated to the health and wellness of special needs families, specifically. She is also the mother of a teenage daughter with autism spectrum disorder, ADHD, anxiety and more. It is her life’s calling to help special needs families find joy and balance in their own lives. It is one thing for us to support and honor our children with special needs, but it is equally important for us to honor our own calling and purpose in this lifetime. When we thrive, our families thrive! Yes, even during a pandemic!
Once upon a time, there was a little baby girl who was born 17 years ago. The beauty in her pure innocence took her mom’s breath away. She was perfect. Her mom knew that coming home from the hospital (without that instruction book) would bring some fears of raising a firstborn, but, with lots of family support, she knew that it could be done. This child was an angel; she met her milestones, was a happy baby, playful and engaging.
As the little girl grew, her family began to crack open. By two and a half, her daddy was in his addiction and her mom was just trying to survive and “could not do it anymore.” Because of this, they left and her daddy went to treatment for some help. Over the next few years, Mommy and Daddy worked hard to put their marriage back together again, like Humpty Dumpty. When this little girl hit grade school, she was having some trouble. She could not concentrate, she was having a hard time making friends and the onset of anxiety had come into play.
On the day of her 12th birthday, her grandmother died of addiction. The little girl loved her grandmother and felt very close to her. Mom could never make sense of it because her relationship with her mother had been so toxic and painful and was now so severed and broken. But, the closeness was real and the little girl was devastated. After her grandmother’s death, this preteen was showered with gifts and anything that would make her happy. She was not allowed to grieve properly , because her mom didn’t know how to grieve either. And stuffed-down grief is not resolved grief. Stuffed grief will make you sick, and eventually rise to the surface sooner or later to be healed.
By junior high, the signs started to show: the signs of mental illness. The binging, picking, isolation, suicidal ideation, increased anxiety and bouts of depression. As she finished the end of ninth grade, she had been to treatment twice and was hopefully headed down a different road...a road of healing and recovery. By this point, her mom had recognized that her own unresolved childhood trauma had put her life in just as much jeopardy as her daughter’s. She had been living in chaos since the day that she was born, enmeshed with her daughter and could not find peace within herself. A childhood of appeasing others to stay safe caused her to constantly look to others for validation and purpose. The time had come to find herself and begin her own healing journey alongside her daughter.
Last summer, the 16-year-old young woman advocated for herself and asked to go to boarding school. The public school system just wasn’t a fit and the private school was not what she needed either. So, her mom called an educational consultant and they set out to visit four schools up north. Having lived in the South, they knew this would be quite the transition! She picked the last school on her mom’s list. But, her mom trusted her daughter and wanted her to take ownership in her decision. The school year went great! She made friends, experienced joy, struggled and matured. On March 9th, she came home for what was thought to be a two-week spring break. It could not have been predicted that spring break would continue on until she completed her junior year online. Unknown is never easy.
Her senior year was still up in the air until just a few days ago. Her family had been back and forth of what the right decision is to ensure their daughter’s safety (physically and emotionally). The anxiety of making this decision had affected the entire family.
There is still so much uncertainty in the world right now and the feeling of wanting to be in control seems to be so far out of reach. At the end of the day, all we can believe is that the trust is there and that “whatever happens is what is supposed to happen” and that they will be prepared.
OUR journey is far from over and we do not know what the future holds for any of us. As I wrote this life story about my daughter, I realize that she did not ask to be diagnosed with mental illness. She did not choose this life, but it is hers. I did not ask for mine either, but it is mine. We both have experienced some immense pain and neither of us have asked for that either. Her behaviors were telling signs that something was wrong, that she was in pain and that she needed help, but didn’t know how to ask for it. She was never a “bad kid”; she was just a kid who was hurting and I didn’t know how to read the signs.
What do I know to be true? This 17-year-old daughter of mine makes me laugh every day. She can simultaneously warm my heart and drive me crazy with teenager sass! But now I know that she gets to be who she is meant to be. And I am working on who I am meant to be in my own authentic way.
As we continue to work on this, it definitely feels a little messy right now, messier than usual. We are all navigating unfamiliar territory right now and it is extremely difficult. We are doing the best we can to advocate for our kids. Some of us don’t have the choices to make, and, for some, the choices are being made for us. My daughter’s anxiety is on the rise with all of the restrictions and altered class schedules that are being put in place at her school due to COVID. My daughter (as most of our kids do) needs structure and socialization with peers. Every time we think the decision has been made, the schools create another shift. She struggles with change. It is hard for her. As her mom, I have learned to sit with her, validate her feelings and then help her with the tools to bring that anxiety down. The most healing part for me is to be able to sit with my own discomfort and anxiety. Because if I cannot sit with my own, I cannot sit with hers.
Whether your “messiness” comes from your own childhood or being a parent right now or a combination of both (like me), it is so important that we find someone to hold us in our messiness. There is hope for all of us. We have to dig deep and find the courage to reach out for support when we need it.
If you are a mom of a special needs child or a child that suffers from mental illness, search for that “someone.” That someone is there, available to you. It’s not easy, I know. It’s extremely hard to show some vulnerability and share our stories. But sharing our stories is where the healing and connection begins. And, we all deserve that new beginning.
Joye Madden is a parent coach and consultant dedicated to guiding others on a journey of personal and family growth, insight and healing profound happiness. This dedication stems from her own personal healing story—Joye had to dig into the darkness of her childhood plagued with her parent’s mental health and addiction. These issues followed her into her marriage and family. She courageously embraced the need for therapy, rehab and therapeutic boarding schools as part of her family story. Watching her loved ones and children struggle with mental health disorders only strengthened Joye’s desire to fight against the stigma of mental illness.
Joye’s long and arduous journey led to the discovery of her own light and she is now devoted to walking with clients alone a similar path of healing. Her practice in the field of recovery began at Bradford Health Services, an addiction recovery program. She assisted in their family program, by welcoming the family members and sharing her story. She was the first face they saw, as they entered the doors to become educated on addiction and mental illness. She was always there to greet them with a huge southern smile and a big hug. She then moved on to The Bridge to Recovery, a trauma treatment center, where she sat as an active board member. Before that, she assisted in their family program and their Adult Professional Program. After countless coach trainings, conducting research and learning from mentors, Joye went out on her own to become a true advocate for families struggling with mental illness and addiction. She is now a certified Conscious Parenting Coach (by Dr. Tsbary Shefali), specializing in working with parents or caregivers who have children suffering from mental health challenges.
Joye lives in Birmingham, Alabama. When she is not working with families, you can find her knitting, baking, playing with her pups, and enjoying time with her family!
by Laura Lee
The parallels I’m witnessing between this time in history -- what it is asking of you and bringing up in you -- is not very different, perhaps, from what you already know and have experienced as a mother of a child with exceptional needs.
Most recently, I’ve seen this time of living through a global pandemic as a giant magnifying glass. It’s magnifying all the challenges, joys and pain. It even feels as though it’s multiplying them, adding on an extra layer to all we’re experiencing.
Perhaps this feels deeply kindred to how it felt when you became a mother, or a mother of a child with exceptional needs. I define exceptional needs as “anything above and beyond the typical emotional, spiritual or physical needs, or the requiring of an extra layer of care, time, emotional support or resources.”
This pandemic has also presented us with an extra layer of sorts. An extra layer of fear and pain. We’ve felt the sorrow, the anger. But we’ve also been offered beautiful moments of creativity, ingenuity, determination and found gratitude.
When life hands you a challenge outside of your comfort zone or beyond what you ever expected or thought you could handle, you are given a choice. Rarely do you ask for these things to happen or plan for them. Yet here they are. They bring great challenges and if you decide to meet those challenges, it is also an opportunity for massive growth and transformation.
You may enter these challenging new soul assignments with great sorrow, shock, dismay, or even anger. You might scream and rail against the "too muchness" of it all. There is no judgement in that process. However, after a time, you realize you can no longer go on this way. You must find peace in yourself and in this new life experience you have been given.
As a mother, there are important truths that I’ve come to know deeply and intimately in my own life and the lives of countless mothers I’ve coached on their own healing journeys.
I share these today in hopes they will guide you back to your truth when staying at home another day during quarantine feels like it will break you. I share these for those of us who are done struggling with the same sadness, grief and anger that keeps us stuck. There is so much freedom to be found here.
I once had a client that opened up about her experience with her exceptional needs child. After a bit, I mentioned the idea that if her child had exceptional needs, that meant that she now had exceptional needs. Not that she was “needy,” but in fact, the “guardian of her needs.”
She stopped and took this in. She realized that underneath it all, she believed that since her child had exceptional needs this meant that she had to sacrifice more. She was stunned by this realization. She had felt it but had not let it be consciously known.
To sacrifice more of herself -- to fully focus on keeping her child safe, healthy and cared for -- wasn’t actually serving the family in the way she believed. Did her child though, not need less of her, but all of her? While she shared, she began to realize her precious child needed was her whole self. That child needed her feelings felt, her body rested, her mind clear of damaging guilt and judgement, her joy, her dreams and passions realized and acknowledged.
You may be thinking, how in the world is this possible? I don’t have the time or resources to give myself these things. I would say, if God has given you the needs and desires, you do have within you what you need, you just need to be willing to journey through the uncovering process.
This is where the inner work comes in. You can’t skip it. It’s worth every uncomfortable moment of feeling and letting go. The alternative is half-living, or living to sacrifice. That will always leave you vacant and depleted. Spirit desires for you to be fully realized, fully awake and fully alive!
There is a caveat here. You have to be willing to ask for help, for support and then actively receive it. You must be willing to step into acceptance. This is what allows the creative parts of you to mobilize.
This mama and client unearthed a pattern and several untruths of limiting beliefs around her experience with her son, where she felt drained and left with no energy. Because she believed she had to sacrifice more of herself, she kept finding proof that this was true. She was in a pattern of relinquishing her own self-care in times of distress. She would become sick, and only then would she get back to taking care of herself.
This had become an exhausting cycle. It wasn’t healthy for she or her child. This mama finally became aware of the pattern and began to do the inner work to transform. She became aware that it was at odds with her core values of Connection, Stillness and Acceptance. Then we created a roadmap that would lead her back to those values. She put in place practices for preventative emotional, physical and spiritual care.
When she took on the new awareness -- yes, she had a son with exceptional needs, therefore she also had exceptional needs -- she was able to create time and space for healing herself, holding her desires as sacred.
This was the greatest gift she could ever give herself, as well as her son.
This became her prayer and truth:
It is safe and holy to hold my needs as sacred, as I hold space for the needs of my child and all those that I nurture.
Dear mama, you are precious and worthy of your own healing. Whatever is coming up for you now is coming up to be healed. Will you answer that call for healing? You are so very worth it.
Here is a simple process for you to dig into as you begin this in your own life. To stop sacrificing yourself and start nourishing yourself for your highest good and the good of all.
What am I struggling with most?
What do I desire most to be experiencing instead?
What am I believing about myself amidst the struggle? What am I believing about the world? About others?
What would I need to let go of to allow a new way of being and experiencing my life? A way through the struggle to the transformation on the other side?
What new belief would I need to take on in order to move towards this new way?
What is one action I can take to set this new belief in motion?
What support and accountability do I have in place to help me set this sacred new boundary?
A Plan of Loving Action:
When I feel weary, I will:
When I want to give up, I will:
When I feel shame, I will:
When I go into blame, I will:
When I want to rage, I will:
What would your life be like if you begin to write a new story? Not a story devoid of struggle, but a story of beauty and of transformation within and alongside the struggles. A story that includes ALL of you, your heart’s desires, courage, vulnerability, imperfection, joy, bravery and all of your exceptional beautiful needs?
Join me here @lifewithlauralee
written by Laurie Hall
PARENTING IS A TIMELESS TEST OF COURAGE
Do you too, struggle sometimes while standing in trepidation at the door of what might be next?
Taking a different form than the mold of our motherly and fatherly hopes, NO IMAGINING COULD HAVE SHAPED ME for the LOVE I would feel, or the FEAR I would experience in raising our sons. I am constantly asked to watch their ascent into difficult territory; TO LET GO of the rope between us that exists like a living bond.
Do you wonder as I do,
How do I PREPARE THEM for this life that will be shaped by their experiences of growing into a future uncradled by me?
Typically developing, or otherwise, while I would walk across a desert however dangerous, to take their hand in mine to guide them, as HELPING OUR KIDS TO FLY INDEPENDENTLY, WAS ALWAYS THE GOAL.
I wish I had a dollar for every time I was afraid and said to myself, ALL YOU CAN DO in this moment IS THE NEXT RIGHT THING. Twenty-five plus years in, I am sure, it is the DEEP ABIDING LOVE for my children that has sustained me. (To be completely transparent, a good cry now and then, hasn’t hurt either!)
And my special young man…
NO ONE TOLD ME how to feel; how to sit with the full terror, and the full gift of his love. The first time I heard the words, “No one wants to sit by me” I felt my heart implode. I WAS CRUSHED.
NO ONE TOLD ME… how to feel my way along the sharp edge of his disappointments.
No one told me…The blade of his loneliness, and the rejections of his otherness, would be so sharp, and cut so deeply. You know what I mean?
Even though intuitively, we want to protect our children, GROWTH and HONESTY are reached through the doorway of struggle.
Disappointments are inescapable.
Heartbreak is unpreventable.
Crisis, from time to time is unavoidable.
WE DON’T ALWAYS HAVE IT ALL FIGURED OUT, and that’s okay – I rarely do. Humbled daily, there is no way to prepare for every unknown that is sure to come. Just when I think I’ve found my footing, I am asked to take another giant LEAP of FAITH.
Remember, wherever you are, it’s called HERE.
The CHALLENGES CAN BE PLENTIFUL. I know.
As with many life experiences, the pain from the struggle, is often A WAY IN.
All we are, we are, and every day is the start of something new and different. (I KNOW this “new” can also sometimes, be a double-edged sword.) These years have taught me, it is often about adjusting the lens from which I see, rather than shutting down, or REINVENTING the wheel.
HERE FOR YOU, are my most sincere heartfelt WORDS OF WISDOM.
In that first peaceful, hardly noticed moment when you wake, and the thirst for everything finds its true form, TAKE A DEEP BREATH. The act of parenting, is a HUMBLE apprenticeship. Grab your coffee, feel the fear, and trust YOU WILL greet, gather and sift through, whatever washes ashore with determination and love.
Feel the fear and LEAP anyway.
Please reach out with any comments, or to let me know if this post touched your heart via Laurie.email@example.com
or private message me @lightwecreate on instagram
written by Megan Dolan
“Hadley, where is your Invisalign?”
My 8-year-old daughter shrugs. “It’s in the case.”
That’s good. At least it’s not wedged somewhere -- naked and afraid -- see through plastic molds of my daughter’s teeth crammed in between the seats of the car or couch cushions. It is safely tucked inside the groovy purple case with her name and address neatly printed on the front.
When she first got the Invisalign, a few months ago, she’d wear the trays at night and take them out to eat breakfast, put them back in to go to school, take them out at snack time, then in until lunch, then out, in out, in out. There was a rhythm, a structure, but now she’s home ALL THE TIME and asking for snacks ALL THE TIME and the Invisalign is invisible in a whole new way.
“Well, we need to find it.” I say this with authority. Or at least what I think authority sounds like. At this point, I’ve lost all authority and we both know it.
We are a few weeks into the COVID-19 lockdown and I have regressed into a former version of myself—volatile, moody, depressed. I’ve spent the better part of my adulthood integrating these shadow qualities into a fairly healthy and functional person, but weeks of home school, plus providing all food and necessities for my aging parents, as well as the complete annihilation of any shred of my autonomy has sent me into some kind of emotional development wormhole. I’ve been spit back out as surly 19 year old me who only wants to eat , sleep, and binge watch Netflix. For the record, there was no Netflix when I was 19. The only way to binge watch anything was to get off the couch and drive to Blockbuster and if you had the platinum membership you could rent up to 5 videos.
But I am the mom, and if I check out, nothing gets done.
I’m lying on the floor of my daughter’s room, it’s been a rough morning. We’re taking a break from distance learning and playing a new board game called Super Secret Stealthy Spies. I’m holding the directions over my head, reluctantly reading them aloud and secretly hoping that the kids will just start playing without me so I can take a nap.
“How do you play, Mommy?”
“Well, it says the youngest player goes first.”
Already, we have a problem.
“Why does she get to go first? That’s not fair!” My ten-year-old son chimes in.
I lay blame on the game manufacturer—“It says it right here in the rules, Tyler.”
My son, a stringent rule follower, grabs the printed rule sheet, reads, then sighs and hands my daughter the die.
She rolls—“Six! One, two, three…can we go diagonal?”
“No!” he yells.
The game inches forward. The objective is becoming clear. After my turn I sense a small window--
“I’ll be right back.”
I slip out and head to the kitchen for some “breakfast chocolate. That’s right, just a small square or six of Trader Joe’s Chocolate Lover’s 85% dark chocolate bar. Shit, I ran out yesterday. There’s no popping out to grab a bar of breakfast chocolate right now, not when I have to suit up, wait in line and don my mask, making sure to smile with my eyes to prove that the virus hasn’t won.
I choose instead a pink grapefruit; a sad substitute for breakfast chocolate but sacrifices must be made.
I hear a loud thud and muffled crying. I race back to my daughter’s room balancing the grapefruit on a small plate.
“Tyler got mad because I won and he pushed the gymnastics mat on top of the game and crushed it,” she says between convulsive sobs.
“She did not win!!!” My son’s disembodied voice screams from where he has barricaded himself in the closet.
It will take at least 30 minutes to get everyone calmed down and able to get back to work.
I enter the room and wade through the carnage, taking a seat on the floor. I dig into the grapefruit, and put a fleshy chunk in my mouth, tasting its sweetness and noticing the clenched feeling in my chest. I breathe; trying to stay in my body instead of rushing to blame myself, the kids, my husband—who’s blissfully cocooned in the home office 6 feet away--carrying about his workday with other rational adults.
As I go in for my second wedge, I notice a small flash of purple under my daughter’s bed. I lean, reach, and grab her Invisalign case and give it a shake. The light rattle confirms that the trays are indeed inside.
It’s a small victory but I’ll take it.
Megan is a mom, wife, writer, actor, and storyteller. She has written for L.A. Parent Magazine and been a guest speaker at the TEDx Pasadena Women's conference. Her successful solo show, Lemur Mom (because we can't all be tiger moms): one mother's adventures in autisim had sold-out performances in seven cities in Southern California and Arizona. She was recently a contributor to the first ever virtual Expressing Motherhood storytelling show.
Written and edited by Abby Khou
The COVID-19 outbreak and subsequent lockdown orders were unexpected for most of us. All of a sudden, we were thrown into this topsy-turvy world where most business are closed, we can’t take our children to the parks or beaches, Friday nights consisted solely of delivery or rushing off to the grocery store, and school, the layer of security that we depend on for our special needs children, is closed. Our kids’ special needs are intensified in a quarantine like this. Kids are not able to get the outlet and release from outdoor recreation, moms and dads are now forced to homeschool on top of working from home, and to top it all, there is the anxiety and worry for our health that COVID-19 causes.
Being active in a few special needs social media forums, I have noticed one emerging emotion from special needs moms right now. Mom guilt. Feeling like we’re not doing a good job homeschooling or we’re not doing enough. Looking at other moms’ photos of doing arts and crafts with kids and other creatively fun activities and thinking, “why can’t I do that?” Social media intensifies the feeling that “I should be doing that,” or “I’m the only one who doesn’t have this all together.” Feeling that we’re not making the healthiest choices when it comes to feeding our children and giving them way too much screen time. In the make-believe world of social media, everybody is in control and everybody has it together. Yet sometimes we forget because the content is so compelling and we have emotional reactions.
In this blog, with the help of Samantha Morey, LMFT, and Ingrid Hicks, LMFT, we will explore the phenomenon of mom guilt. What is it? Why do we experience this? How do we cope with it? It is our hope that through the words of these wise women, we may get some relief from the completely undeserved mom guilt that we sometimes experience and learn some strategies in managing or alleviating it altogether.
Q. Can you describe the phenomenon of mom guilt?
Ingrid: I think all moms struggle with mom guilt during different seasons of raising their children. We always want to give our children all the best of ourselves, and either repeat our positive memories we had as children or try to heal our wounds by doing better for our own children. We place a lot of expectations on our own shoulders.
Samantha: Often mothers who feel often and intense mom guilt already possess a "I am not enough" narrative way before motherhood. This is about understanding the origin of that decision (that they or someone else put on them) and tending to that, choosing a different narrative for themselves.
Q. What causes mothers to feel inadequate and that they are not doing enough for their children?
Ingrid: We have so much internal and external pressure to provide our children with a safe, loving upbringing, and feel so responsible for their happiness. We compare our mothering with an external image of a “good enough mother,” that we take on standards that don’t fit who we really are. The most important task of being a good mother, is finding an approach that embraces who we are as a unique person, with all our strengths and weaknesses. When we find our voice from deep down inside that comes from self-love, we can find our true voice as a mother, and we will unlock the key to freedom!
Q. What are ways that mothers can cope with mom guilt?
Ingrid: Our children absorb how we feel, so the best thing we can do for our children is to help ourselves feel comfortable in our own skin, especially when we feel inadequate. Our children’s memories will be influenced more by how they felt with us, than any lessons we teach them. If only we can practice a mantra, “I’m a good mother, even when I’m imperfect, because I have the best intention in my heart.” Then maybe we can model self-compassion and acceptance before our children, which will give them the best advantage in life. If we can handle our own perceived mistakes with grace, gentleness, and compassion, we create an environment of kindness for ourselves and our kids.
Q. How can we replace this self-defeating state of mind with more positive, self-affirming emotions?
Ingrid: Let’s redefine our job description as a mom. We are a source of happiness to our children, just by being present, in all our raw emotions. They need us, in our vulnerable, real, human state. When we accept ourselves completely, we give our children permission to feel everything, and not judge themselves. Let’s practice being non-judgmental, of ourselves, and each other.
Samantha: It's about deciding who you ARE and who you AREN'T as a mother... not what SHE is, but who YOU are. You have been specifically chosen to be YOUR KID'S MOM, no one else, period. Find the qualities you possess and make them bloom... not the qualities you don't.
Q. How can being in quarantine contribute to feelings of mom guilt?
Ingrid: First of all, we were completely unprepared. Secondly, none of us have chosen this life we are living right now. Lastly, we don’t know when things will go back to “normal”. So we are learning to accept circumstances we haven’t chosen, with so many worries, other than just our children’s education. We have so many reasons to be anxious, uncertain, and lonely. This is trauma on so many levels, we need to walk gently, and practice speaking to ourselves with a calm soothing voice.
Q. Can you leave some words of wisdom to mothers right now who might be feeling that they are not homeschooling the right way, that other mothers are doing way more than them, unable to regulate their children’s behavior or feel undeserving when they take time out for self-care while in quarantine? Thank you so much for your help and participation.
Ingrid: We must start with self-compassion. Take a journal out and write down all your worries. Make a list of them, don’t hold back. Then take a moment of quiet, place your hands on your heart, and say out loud, “my feelings make sense,” and “it is perfectly understandable I would feel all these feelings.” We need to recognize we are operating with half a tank, with fear and panic all around us, and we are working so hard to protect our home as a safe haven for our family. Your heart also must be protected. You must be kind to your own heart so that those around you feel safe. Change your vision of what a successful day looks like. Put your own joy and comfort as top priority for the day. Plan to do what brings you joy. Don’t worry so much about your usual rules, or routine. It’s okay if the kids are getting more screen time than usual, just so you can get some time out for yourself. It’s okay if dinner is not as well rounded as usual. It’s okay because your own well-being is your tool. Your own balance is what you can control during this uncertain time and will allow you to handle this very challenging task with grace, and gentleness. You being okay is the most important factor in how your children will experience this quarantine. Take care of you, be gentle with yourself, and your kids will feel safe.
Samantha: This quarantine experience is going to be bumpy. Your kids will not remember the fancy Pinterest craft you laid out for them... but they WILL remember the laughter, the mealtimes, the general tone of calm and trust that YOU created for them during this time of uncertainty. They will more than survive with a school semester full of holes, unfinished assignments, awkward art projects and questionable Living Room PE classes, ridiculous amounts of TV and electronic devices, but they won't survive well without your choosing to just do your best and be a "good enough" mom.
written by Amy Neyer
Being a special needs mom, I often hear cliché compliments such as, “you’re a superhero,” “I don’t know how you do it,” and the ever popular, “I couldn’t do it if I were you.”
While these well-meaning statements are meant as forms of praise, they are misguided, and end up further isolating me and reminding me of my “otherness” in the parenting world. By placing me on a pedestal as a “super mom,” I am now automatically on a different playing field. Not accessible. Not equal.
Most of the time, I do not feel like a superhero. Some days, I feel like utter crap because I cannot figure out, despite all of my efforts, why my son is in pain, or why he is upset. Or maybe in my sleep-deprived state, I mess up one of his medications. I’ve experienced more lows than highs some months, and it can really wear on me, physically and emotionally. So when people say, “I don’t know how you do it,” instead of my usual, simple “thank you,” I feel like my response should be, “I’m barely doing it. I’m smelly, and tired, and feel like I’m failing and floundering. But since you see me as a ‘super mom,’ I cannot be honest about my troubles with you. They are apparently out of your league.” Feeling so low and being placed so high really drives it home that you are not truly being seen.
And then there are the times when I definitely am kicking ass at this parenting thing, and I know it, and totally deserve a medal. Five medical appointments, no childcare, and now I have the flu? Handled it. My son managed a haircut without vomiting? Boom. We finally got out to a family gathering (even if it was only for 15 minutes)? Where is my cape?! But again, because of my “otherness,” most people will not know just how much of an accomplishment it is to leave the house in the morning without my child having a meltdown. They cannot possibly know what it is like to have five appointments in the same week, not including PT, OT, and speech. Even in my times of accomplishment, I do not feel like I can celebrate with others in the way I need. My wins are so foreign, they are not seen as wins by others.
What this all boils down to is “otherness.” Not being truly seen or understood by others. It takes the normal, day-to-day isolation (that is, pre-COVID isolation, which was still ridiculously isolating), and it amplifies it. I don’t want to be seen as a superhero when I feel like I am drowning. But I do want my friends to share in my celebrations over the small wins that mean so much.
It seems like too tall an order, like I’m asking for a superhuman friend.
Someone I don’t have to explain anything to, because they get it.
Someone I don’t have justify anything to, because they live it.
Someone who enthusiastically celebrates with me over the tiny wins that make my whole week, because they feel it too.
Clearly, if you’re reading this, it means that you are also a special needs mom, and likely fit the exact description I’ve depicted above. Fellow special needs moms share the deep understanding that basic, day-to-day moments for “typical” families are often out of reach for us, and when they do occur, it feels like a huge victory. There is a felt appreciation for the loneliness, the isolation, and the otherness.
Special needs moms are the perfect friends for other special needs moms.
But merely knowing that similar moms are out there sharing my truth is only half the battle.
When I’m fully consumed with a child who needs me 24/7, I do not have the time or energy necessary to foster and maintain these perfectly-aligned relationships. It’s a huge obstacle to overcome, and sometimes feels even more challenging due to the current COVID-19 quarantining measures.
And yet, I feel hopeful.
This COVID-19 self-distancing situation, while painful and difficult in so many ways, is exactly what will bring us special needs moms closer together, more than before.
As special needs moms, we are kind of superheroes at this social distancing thing. We are already ten steps ahead of every other mom out there. We know how to adapt to being isolated, because we already are isolated! Only now, with all of our appointments, therapies, and outside responsibilities on hold, or significantly reduced, we have an opportunity to create space and connect in a way that simply wasn’t even considered before.
For example, I have had multiple opportunities to join WABT support groups on Zoom in the past few weeks – many more than I would have been able to attend in a typical month. I have tried connecting with friends online for joint workouts, when I would have often exercised on my own. There are opportunities to join in for birthday celebrations, holidays, happy hours, and more, now that it’s the norm that no one can show up in-person. These bite-sized, virtual moments of connection provide us opportunities throughout the week to feel less isolated during the COVID-19 pandemic, and, I would argue, less isolated than we would have felt before the pandemic.
Of course, I hope that in a few short months, we will be safe to leave our homes again, to embrace our family and friends, to enjoy face-to-face interactions, and to resume therapies and doctor appointments in-person.
While the world may eventually go back to “normal,” our normal is anything but. We will be left with continued isolation, as that is our baseline. Yes, we will have more opportunities to leave our house, and I am certain my son will be thrilled to go back to his favorite activity (riding elevators at hotels), but ultimately, our isolation will continue.
But I choose to remain hopeful. I hope that some of the practices developed during this time, like virtual support groups and happy hours, will continue, and that our shift to virtual connection will continue providing relief from the isolation and otherness experienced before COVID-19. Even when the world goes back to in-person meetups, I hope that the precedent will be set to include those of us stuck at home who want to socialize but are unable to leave the house because of our children’s needs. I hope that there will be greater empathy for the social distancing required of special needs moms on a normal basis, and that the mundane, day-to-day tasks, which everyone took for granted previously, will be celebrated for the special needs moms who can never take them for granted.
And, if after all of this, everything returns to the way things were before, I hope, at the very least, that at the next WABT virtual happy hour or support group, we all show up wearing our capes. Because, let’s be honest, we are definitely all superheroes.
Amy Neyer is a mom to a medically complex little boy in Torrance, CA. Besides being a full-time mom and caregiver for her son, she is a neurologic physical therapist and a writer. She writes to advocate and educate about her son’s rare conditions and connect with other special needs moms.
written by Lora Ackermann, WABT board member
Self-care. Two small words.
An enormous multitude of meanings and attached emotions.
Needed and desired daily.
Yet a great cause of overwhelm; also daily.
How is it these two itty bitty, innocent words can cause such unimaginable distress?
Because we make it SO INCREDIBLY HUGE and time-consuming in our minds. We add ‘self-care’ to our mental to-do list, then, typically, at the end of that day….that one that has us barely crawling, if that, into bed, brain still spinning on any number of challenges great, small, imagined, real, extra real, that we’ve either overcome or, more-than-too-often, barely scratched the surface of; body beyond exhausted from managing everyone else’s crap (I mean lives….), not because we choose to, but because being a mom, well, it just comes with the job; inner voice (or voices) that barrage our final thoughts with all that we didn’t accomplish and/or all that we failed at…..that day that feels a bit like the movie, “Groundhog Day” as it keeps repeating itself over and over and over and…you get the picture….
Yes, at the end of THAT day, we lay our weary head gently on the pillow and just before the final day’s flutter, we think, “Sh*t! I forgot to do that self-care thing!” And just like that, it becomes ONE MORE THING we’ve failed at.
This self-care overwhelm happens, in part, owing to the following myths (in no particular order):
1. Self-care, to be successful and effective, has to take a long time.
2. If I stop to practice self-care, I am taking time away from (insert any of many here: my kids, my spouse, my job, my family, making breakfast, lunch, dinner, getting the laundry done, etc.)
3. Self-care is selfish.
4. Self-care is a nice thing to do if you can make the time, but it’s not a necessary part of life.
5. Self-care costs money.
Let’s tackle these myths head-on:
1. Self-care, to be successful and effective, has to take a long time. No, no it really doesn’t. I promise you. Self-care can take as little as five minutes or as much time as you’d like it to. Part of this depends entirely on what you are expecting from the self-care. If you’re expecting that one self-care experience, no matter the length of time, is going to change your life in a day, well, then you’re right…..it won’t work. If, however, you’re in it for the long haul, then I invite you to try what I like to call “Bite-size self-care.”
Here’s how “Bite-size self-care” works:
A. Choose something you can do in, say, 15 minutes or less. Start small. With just a bite. It could be that you hide for an extra five minutes in the bathroom (or closet, or car, or…..wherever you need to….) and literally just take five deep breaths, or sit outside and breathe in the fresh air for five minutes, or read something funny for that five minutes…..or listen to a favorite song, dance like no one is watching for five minutes (don’t hurt yourself, please), have a glass of wine…. Go for a walk for 15 minutes, you get the idea. I’m not talking about going to get that massage, or grabbing a Zoom happy hour with the gals, nothing wrong with these at all….we will get there, I promise.
B. Next, start with making it happen ONCE a week, not every day. Every day is your ultimate goal, but it’s not your starting point. You have to start somewhere and build upon each success. IF you tell yourself you HAVE to do this every day, you are setting yourself up for failure. So, don’t. If you can ramp up to more often quickly, great; if not, no problem. If weekly is too hard, try starting with once a month. One bite-size step at a time.
C. Add some variety when you can. Self-care comes in all different shapes and sizes and attends to different needs in our lives: creative, family, personal, health and well-being, professional, etc. So, mix it up a bit. If you need ideas on what to do, reach out and/or research. We are here to help!
D. Celebrate only your successes; never your failures. (We learn from our failures, but we celebrate our self-care successes.) Realize that each time you DO accomplish this bite-size self-care, you are making progress—no matter how long or how often. Feel good about what you’ve done. Period. There’s plenty we don’t feel good about; self-care shouldn’t be one of them.
E. Rinse and repeat, that’s right. Do it again the next week. And the next. When you feel you can, add another time, or add a few extra minutes. Or both. Either way, just keep moving forward. Bite-size. One small bite at a time.
There are a plethora of books and articles out there on success, personal growth, leadership that will tell you that success comes from small habits, practiced daily (ultimate goal, remember) more so than one big, long push every once-in-a-while. There, I just saved you about 100 hours in reading all of that material….so put it to good use. Heehee!
2. If I stop to practice self-care, I am taking time away from (insert any of many here: my kids, my spouse, my job, my family, making breakfast, lunch, dinner, getting the laundry done, etc.)
There’s a story of a man…he’s in his yard chopping down a tree with a dull ax. His neighbor walks by, asks what the man is doing. The man says, grunting as he continues to try to chop unsuccessfully, “I’m cutting down this tree.” His neighbor, seeing that the ax being used is dull, asks, “Well, why don’t you stop and sharpen your ax so you can chop better?” The man says, still grunting, “I can’t; I have no time.”
YOU, amazing warrior mama. YOU are the glue that holds your family together. Sorry; it’s just the truth. For this reason, you NEED to take the time to practice self-care. You need to stop and sharpen your proverbial ax or your efforts may become increasingly fruitless. In addition, our children are not only watching what we do, but what we don’t do. They learn from both.
For many years, my daughter watched as I ran around like a crazy woman trying to serve everyone, to take care of everyone, to make everyone else’s lives my personal responsibility, to stuff away any feelings that arose, rarely, if ever, taking any sort of a break. This is what she began to copy, to my horror. It’s taken me over eight years to reverse that learning and we are still working on it, daily. Our children NEED to see us practicing self-care so that they, too, don’t fall into the same “THAT-day, dull-ax” trap above.
3. Self-care is selfish. The bottom line here is one we’ve heard before. If mama ain’t happy, ain’t no one happy. So, warrior mama, take care of yourself and I promise you, your family, your job, your spouse. They WILL be happier. By taking care of YOU, first, you ARE taking better care of all of these areas, all of those whom you care so deeply about. AND, you will be more effective at it as well.
4. Self-care is a nice thing to do if you can make the time, but it’s not a necessary part of life.
Article after article from moms, medical doctors, therapists…they all say it in one way or another: Consistent self-care, be it daily, weekly, or monthly, can help prevent burnout, fatigue, increased anxiety and depression, and other physical and mental ailments.
Self-care is not only a nice thing to do, it’s a requirement in order to extend the quantity, and deepen the quality, of the life you have been given.
5. Self-care costs money. Okay, so, self-care CAN cost money, but it doesn’t HAVE to. If money is an issue that keeps you from stepping into the world of practicing self-care, I encourage you to re-read the answer to the first myth. Make it simple; make it bite-size. There are hundreds of things you can do to practice self-care that cost little-to-no money, yet, are still effective.
Have I convinced you, yet? To try a bite-size self-care approach? To drop the excuses (a.k.a. myths) and start, today, to take your life back? Even if only for a few minutes a few times a month. You will find, in time, with each additional bite, renewed strength, increased energy, an even happier home/spouse/work situation, and a healthier, longer-living YOU. Just for starters.
Still feel hesitant or don’t know where to start? Reach out. Reach out via the WABT website, the private Facebook group, or feel free to shoot me an email at firstname.lastname@example.org. I’ll help you start on the path of bite-size self-care (no charge) and soon you’ll be enjoying your just desserts of life. Go on. Take a bite. You’ll be glad you did. It’s calorie-free and simply delicious.
Lora Ackermann is a single mom who hails from the whole west coast having lived in Oregon, Washington, and now California (for the past 12 years). Her WABT journey began when her daughter, now 15, was diagnosed at age seven with several ‘hidden’ special needs, including OCD, ADD, GAD, and recently Cyclothymia, and her son, now 13, was diagnosed with ADHD at age six. Lora has authored several printed articles, a blog, and is currently working on two book projects. She is a stress-management specialist, author, artist, mom and all-around-life-goof. Lora has a passion for empowering people through the written word, connection, art and interactive experiences and she is truly honored to be a part of this WABT community.
by Rory Hunter, Founding Board Member of WABT
Life can be overwhelming. Balancing and juggling everything on your plate can seem like an impossible task at times. An overwhelming feeling can lead to stress, anxiety, fear and a sense of paralysis, like being frozen in place and unable to string thoughts or actions together, much less think coherently or rationally. Overwhelmed is defined as being buried or drowned under a huge mass, to be completely defeated.
I have lived with and through some overwhelming situations in my own life: the cancer diagnosis of an infant child, his subsequent neurologic issues and special needs, and my husband’s battle with brain cancer and his death, leaving me a widow with three young children at the age of 41. Yet, I have survived to tell the tale. Here are five tips I have used when dealing with life trying to bury and drown me.
Yes, I know it is a bit cliché and overused when people say to “just breathe” during difficult situations, but I am not referring to a stubbed toe or a bad grade. I am talking about the point when you literally cannot breathe because the situation you are in has paralyzed you so completely, your mind has gone blank and your fight or flight reflexes have left your body. I can remember two times in my life when my blood ran cold, I heard ringing in my ears and my body was in shock not from what was happening to me, but as a physical response to a situation I was in or news I was given. The only thing I could control and concentrate on in that instant was my breath. According to a paper published in Science, researchers led by Mark Krasnow, a professor of biochemistry at Stanford University, have been studying the effect of breathing patterns on a group of neurons in the brain stem. Their findings state that “this liaison to the rest of the brain means that if we can slow breathing down, as we can do by deep breathing or slow controlled breaths, the idea would be that these neurons then don’t signal the arousal center, and don’t hyper-activate the brain. So you can calm your breathing and also calm your mind.”
When you can think of nothing else to do, sit and focus on your breath. My go-to breathing pattern, when I feel overwhelmed, which manifests itself in me as a pressure like a boulder sitting on my chest, is to do a 4 count square breath. I imagine tracing a square with my breath, and I breath 4 counts up one side, hold my breath 4 counts across the top side, exhale 4 counts down a side, and hold 4 counts across the bottom of the square. I repeat this pattern until I feel calm and the pressure has lessened. Another breathing pattern that others have used that seems helpful is the 4-7-8 breathing pattern. Inhale four counts, hold breath for 7 counts and exhale for 8 counts.
Inventory and prioritize:
I distinctly remember sitting in the surgery waiting room at UCLA Medical Center listening to the surgeon recap my husband’s brain surgery. When he said the words “stage 4 Glioblastoma Multiforme” and “6 months to a year to live” my brain immediately started taking inventory and categorizing things that were essential and nonessential in my life. Unfortunately, it usually takes a crisis to get our priorities straight. That PTA president position I had just committed to for the year instantly seemed irrelevant. The “to-do” list of home repairs could definitely wait. The multitude of activities, sports, classes had to be minimized. It was time to round the wagons and focus on family, treatments and survival. Nothing else mattered.
Practice the art of saying “No.” My grandmother always told me that I needed to use the word “No” more, but I felt a great sense of guilt whenever I told someone “No”. I felt like no one could do the job like I could, or that no one would step up to do it. Guess what? No one is a superwoman. There will be someone else who will say “Yes”, and it doesn’t matter if someone does it differently than you. Experiencing a crisis in your life forces you to practice the art of saying “No,” and it is unexpectedly freeing. I have found some very gracious ways of turning down a social engagement, volunteer opportunity or even a family obligation. Try some of these on for size…”Bummer, I wish I could but …” “That sounds awesome, unfortunately…” “I would have loved to, however…”
Ask and accept help:
I was raised to be strong, suck it up, and carry on. Don’t share your burdens, do not show vulnerability, and my goodness, never ask for help. What I have found both during my son’s cancer diagnosis and my husband’s is that there is beauty and strength in a supportive community. Think about how it makes you feel when you help someone. That warm, loving feeling you get when you have done a good deed for a fellow human. Receiving help is not only about you. When you open yourself up to receive help, you provide others the opportunity to give. It is not a sign of weakness to ask for or receive help. It is promoting the flow of love.
Accepting help has made me more empathetic and better equipped to care for others. During the early days of my son’s diagnosis, hospitalizations and treatments, a friend of the family had set up a meal train for us. Knowing that we were in a very emotionally and medically delicate stage, she placed a cooler outside our front door in which people had been instructed to leave food as to not disturb us. I used this same idea of a meal train cooler delivery system several years later when a young mother at our school suddenly lost her husband. The act of giving care is contagious. The more you receive the more you want to give to others.
Take one thing at a time:
During the past 7 years as a widow and the past 16 years as a mom of a child with special needs, I have spoken to, encouraged, and given support to many moms, wives, cancer patients, and widows. My message usually begins with “Take one day at a time, one moment at a time, one step at a time, and one breath at a time.” Don’t project into the future, try your best to stay in the present. Look at the task in front of you. Complete that task and then move on to the next one. Choose something that seems manageable and do that. If things get too overwhelming, just focus on taking one breath at a time (see #1). By doing this you keep yourself moving forward. You prevent yourself from getting stuck on the would haves, could haves, should haves and the what ifs.
Some people are motivated by a to-do list. If you are one of those people, bravo and keep checking off your list. I am not one of those people. A list gives me heart palpitations and increases the likelihood that I will freeze up and get nothing done. Instead, I make a game plan for the day and sometimes the week. For example, last week I knew I needed to get my paperwork organized and sent off to the accountant for taxes. So, I set aside Sunday afternoon in my schedule to get it done. Yes, it was on a mental “to do” list, but I didn’t have to look at it and get stressed out every day. I had planned on when I would tackle the task, which to me feels more manageable. I do the same with mundane tasks like laundry, grocery shopping, bill paying, etc. I have a scheduled time for each, so I know that I am only focusing on that task at the moment and not worrying about the million other things that need to get done.
Let go of what you cannot control:
My aforementioned and very wise grandmother had a favorite quote: “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.” Whether you have a particular faith or belief system or a general belief in the universe, utilize that spiritual outlet. I remember posting a comment on social media regarding a negative incident that happened during a charity walk, when my husband was in the middle of massive chemo and radiation treatments. A friend responded encouragingly that I should “release it into the universe.” I am not condoning the use of Facebook to vent our frustrations, but my friend's comment made me realize how liberating it was to release the feelings I had bottled up inside. There are so many things in life that we have no control over, yet we hold on to them and ruminate over them. These thoughts overwhelm us and add to our anxiety and stress.
Spending time in prayer or meditation provides that outlet to unburden my fears and worries that are out of my control. I can release them into the universe and practice replacing those thoughts with gratitude, refocusing my mind on the good and positive in my life. The practice of reframing your thoughts does not need to take up much time, but it does take persistence and habit to make it effective. I usually find that my best prayer time is in the shower or in the car, which some days are the only time I have to myself.
I love this quote from the book Rising Strong by Brene Brown: “We don’t have to do it alone. We were never meant to.” There is power, healing, and comfort in reaching out to God, a friend, or a community. Sometimes it is scary and difficult to be vulnerable. I hesitate to speak or write about my life experiences and the fact that life can be overwhelming, because putting my voice out into the universe is a risk. Yet, we may miss the profound love, strength and support that is a result when We Are Brave Together.