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!