In part 2 of this series, we saw the unfolding of my nightmare. Join me as we continue the journey with this final installment of my 3-part series. Discover with me how to navigate the hurricanes that throw you off your path and see the silver linings in those dark clouds.
Everything becomes a challenge when a child is born with disabilities. You’re not celebrating, you’re grieving.
Do you ever feel that just when you think you got it all figured out, another crisis shows up and throws you off your path?
I have spent the last 30 years feeling exactly like that, just when I calm the waters in one area of my life, a hurricane comes out of nowhere and throws me out of the boat again.
I couldn’t process what had happened. This was not my story. I was in a foreign world with my husband by my side. Somewhere from deep inside a big fear grew by the minute. One word took up space inside my head and crept into every part of my being. It burned bold letters on my forehead:
It left me in this unmanageable chaos. We were confused, scared, and silent.
The Horrible Hours
In trauma intervention, when tragedy hits, this feeling is called “The Horrible Hours.” Only there was no intervention; no one talked to us or gave us any advice on how to be or what to do.
Today I know the deepest hours of our lives belong to us and us alone.
If I have to name one day in my life that changed everything, it would be the day I became a mother. The day I would hold my shiny diamond to the sky. Only my diamond didn’t shine, it wept.
I had a life before that day, one that was full of dreams, hopes, and possibilities. With a loving husband and at least four healthy kids in tow. Adventures, birthday parties, a house full of laughter, friends, and family celebrations. And perhaps we’d have weddings and grandkids.
But I have a different life, one that is full of pain and exhaustion. My life now is about creating new dreams, hopes, and possibilities with a loving husband and one exceptional daughter who cannot live independently.
Lessons learned from my baby
Sitting for six months by the incubator watching my daughter survive taught me everything about how to navigate the bumpy road from suffering to freedom.
Helplessly watching my daughter fight for her life was the most difficult challenge I’ve ever had to face.
I had to learn to embrace tiny steps and joys and a different life I had no guidance for.
Writing about this painful time in my life gets me in touch with my emotional memory. I’m not falling apart anymore but tears well up as I remember. My daughter’s birth is not all of who I am, but of course, her life and her challenges are part of my storyline.
I thought a lot about what healing is. To me, it means to become whole again as the opposite of being broken. To be whole again is accepting what destiny delivered, with an open mind and heart. It’s giving us the strength it takes to keep polishing that diamond. It also means that we fail and pick ourselves up, again and again!
To be whole again is the gift of profound joy in my life that I cultivate every day. And I allow for the moments where I’m exhausted, and when sorrow and sadness show up. It also means to not suffer in silence. I want to be able to express all my feelings; there’s nothing to hide in my story.
I can be a healer and grieve at the same time. It’s where I find the connection to my clients. I have walked a few miles in their shoes.
In an article about grief, Mary Lamia, Ph.D. says:
The notion that one mourns a loss and then gets over it, to the extent that emotions about the loss are not triggered in the future, is a myth. As time passes, the intensity of feelings about the loss will lessen… but you’re not going to get over it because that’s impossible: you cannot erase emotional memory.
One-hundred-and-eighty-four days passed before Sarina gained the weight and strength to be able to come home. The days in the hospital were hell and when we brought her home her nursery became an extension of the NICU with an oxygen tank, monitors, and 24-hour nurse’s care, but she was home, a place where she belonged.
My journey into living with my special child had only begun.
Little did I know how much patience I had to grow and create the resources I needed to cultivate a strong body and mind.
Sarina was later diagnosed with several disorders, including Autism. She will never be able to live independently.
Life with special needs children
The title special needs parent is every parent’s nightmare. It’s a life sentence. The day-to-day obstacles we face are excruciating. It’s a daily challenge to deal with a crisis and the unknown. They steal vacations and show up from all directions and don’t rest at night or on holidays. Our children’s limitations become ours, they will never go away. They’re here to stay and teach us something.
Special Needs Parents are hidden heroes in the community with the many other caretakers who serve behind the scenes.
Constant anxiety, feelings of hopelessness, and financial strain are daunting. This level of caretaking is never-ending, it eats up our resources and destroys relationships almost overnight.
PTSD and depression are common, so is divorce.
To find a home for my daughter has been a ten-year nightmare. It created more suffering as Sarina too is frustrated at not being able to live up to her dreams. Her hopes and dreams are like ours, “I want a career I love that loves me back. I want someone to love and a place to belong.”
She needs a village to support her, not just her parents. And the village has yet to be born.
Her diagnoses say little about who Sarina is. She simply says: “I’m born with hiccups.” She is highly verbal, charismatic, funny, and bright. She is the unforgettable kind of person you meet, a buddha nature shining her light into the dark corners of our society. Do we really open our hearts, homes, and resources to people who are born less fortunate than us? I’m sad the answer is no for my family.
Life with Sarina comes with triggers every day. Since the pandemic stopped her from having a career or moving on, we struggle more.
Do we really open our hearts, homes, and in times of financial needs, resources to people who are born less fortunate than us? I’m sad to say the answer is no for my family
On the opposite side of her brightness is a young woman who forgets to close the doors, shut the lights, flush the toilet, go to sleep when tired. She knocks on the door at night. Her “I love you” whispered into our bedroom at 2 am robs us of the energy sleep promises to deliver. Especially when she bangs the doors shut because doing things softly is not possible for her.
Sarina has no boundaries and doesn’t understand ours. She doesn’t know where she begins or ends. The incubator was no replacement for what my womb would have gifted her.
I have days I scream in unimaginable pain: “My daughter stole my life and my marriage. I can’t do this anymore.” It’s the most terrible pain to my heart only troubled parents understand.
Traveling the healing path
And I heal again by the grace of forgiveness, wrap my arms around my girl and we both march forward.
So many people ask me: “How did you survive?” I tell them that my embodied mindfulness practice rooted in Phoenix Rising Yoga is what saved me by showing me how to tap into my inner healer.
We are all born with a deep knowing, a deep sense of wisdom. When things fall apart around us, and they always do, our inner healer steps up and battles the storm to allow us to regain our sense of peace and power.
Sarina teaches me what I’m here to do. It’s to keep loving, myself included, to bring our diamond to shine, and never give up on my why.
She will always come first, but to be whole I’m also here to share my gifts as a healer with the world.
I wish for you to find the silver lining when dark storms hit your life path, as they always will, so you can recognize how to tap into your inner healer; the one who will guide you through your storms and allow you to find guidance to regain your sense of peace and freedom.
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Self-Care True Stories with guest Manuela Rohr: How a Phoenix Rises
Register here: http://bit.ly/SCTSManuelaRohr
Overcoming unimaginable challenges through self-care and transformation, wellness leaders from The Wellness Universe share their inspiring stories with you to help you live your best life.
Manuela is the caregiver to her 30-year-old autistic daughter who was born four months premature. In this episode, Manuela shares her story and how she inspires the planet to live in peace and harmony.