I believe words have the power to heal.
In 1954 the American poet Robert Frost responded to the question where freedom lies with: “Freedom is moving easy in harness.” I have examined what these words mean after my daughter was born.
Especially in times when my path felt anything but easy.
My daughter was born a micro-preemie. At 24 weeks gestation, she weighed only 881 grams. One pound and fifteen ounces, barely able to live through the night. Can you imagine? The picture of her fragile body in the incubator still aches my heart. Today she is twenty-eight years old.
Her birth shattered any hope I had for a happy family with four healthy children in tow. It broke that dream. I had to learn to create a new one.
Our journey together has been full of obstacles. It pierced my heart and teaches me everything I need to know.
Nothing, absolutely nothing, was or is easy. Her challenges shape my life, push my comfort zones and teach me that the tiniest steps still move us forward. And that love is at the root of everything we do.
Tiny steps are the opposite of what I was planning my life to be. I have speed in my blood. I’m energized easily, I’m full of love for life. I like to soar. I thought that’s where freedom lies.
The heartbreak humbled and softened me. It taught me the most important truth; freedom resides inside of me while I can experience any of the above.
Freedom lies right at the center of who I am, available in the depths of exhaustion and in the heights of gloriousness.
I learned to trust that life will unfold, but not only on my terms.
Sarina is on the Autism Spectrum. High functioning, smart and bright and at the same time, low functioning with no sense of time and difficulties with rote memory. She cannot memorize by repetition.
She doesn’t lack knowledge or skill. But when her brain decides to be off, or when she is in the clouds, she is not able to manage her day on her own.
Graced with a great sense of humor and an amazing vocabulary she simply says: “I’m born with hiccups.”
Ten years ago, I noticed the quote: Freedom is moving easy in harness in a small corner bookstore in Napa, California. I was on a mission to plant seeds for my daughter’s future. A future she too dreams of. To live in a community where she is loved and belongs with meaningful work. Connected to a larger village committed to the inclusion of all.
“I don’t want to live in a bubble. Floating around. Invisible,” is the painful realization Sarina shares.
Photo by Manuela
I was with my friend Michele. Endless pouring rain made us take shelter inside the store. Sarina was being interviewed at a supported living program in town. Hope was in the air.
I loved not having to do this alone. In case of a no from the owner, I would have someone to lean on. Michele is a friend who offers a slice of freedom when the harness I walk with threatens to suffocate me.
Do you know friends can do that?
“Look, how fitting,” I said pointing at the quote. “Yes,” she smiled and we both bought the card.
I gazed outside. The rain was hammering its melody against the window. Strong but comforting. Like a drummer in love with her drum, I thought. Nature a symbol of harmony and survival.
If Sarina would be accepted her dream to move toward independence and my dream of an empty nest would come within reach. My dream holds:
- Knowing if I die, I have supported Sarina to live her dream and she belongs.
- Time for passion. My marriage. To grow closer again and rest our weary hearts.
- Time for my mission. I yearn to teach. Yoga and Mindfulness retreats for parents like me fill me with joy. I’m never closer to my why.
Moving easy in harness – I let the words soak in. I took a deep breath to land in the present moment.
It wasn’t a new thought. But still, a difficult one to grasp or to accept. At its root, it holds the reality that all kinds of things happen that break our heart. It’s part of our humanness.
I still carried the definition of what freedom could be from my youth in my heart. Independence and doing what I love at any given moment at its core.
Of course, I hadn’t planned on a special needs child or the loss of three pregnancies before.
Or a move to the United States.
I moved for love, for the man I still feel deeply for. It satisfied my hunger for adventure and new beginnings.
In my twenties, anything but boring or conventional was my rule to escape from a strong Catholic upbringing, convent school torture and rules I hated. Too many musts, don’ts and no’s had suffocated me.
There was no freedom in my steps at this time.
On the inside, my life looked the opposite of what I had wanted. There was a pain and a loneliness only a few people got to see. On the outside, I managed to thrive. With live-in help, I was able to teach, which is my passion as much as the undisturbed time with my husband to be a couple for a little while. It mended what was broken inside. I felt more freedom in my steps.
And then I went to a life-changing retreat with Pema Chodron. If I’d name only one of the many people whom I deeply bow to for their wisdom it would be her.
Her teachings help me understand my struggles and my suffering on a level I didn’t know possible.
In her book When Things Fall Apart, she says:
“We think that the point is to pass the test or overcome the problem, but the truth is that things don’t really get solved. They come together, and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.”
It coined the shift in my view that freedom cannot be found anywhere on the outside. Like happiness, freedom is an inside job. We don’t own it just because we tasted it before. We have to understand that we have to cultivate it every day.
In my daily life with my daughter, I learned to pay attention to my reactions to the many stressful situations. It helped me grow my awareness. Often on a daily even hourly basis, I have the chance to notice my triggers and realize it’s possible to unhook and choose something different.
Sarina was nineteen when she was with me in Napa. She had finished high school a year ago. Her future was open. Open not in the sense of endless possibilities. Rather the opposite. Young people who are special don’t find open doors easily. It’s a shaky walk on a tightrope with most doors closed.
Her health was fragile at the time. She had battled severe pneumonia and was sick most of that year.
Haunting thoughts occupied our life: Would she learn to be able to live on her own? And if not, would we find a community for her? We were guided by her dream to build her own nest and equally strong desire to go to college one day.
Harnesses felt more like chains at times.
Ever since this part of our journey into her adulthood began freedom was harder to come by. As she got older her needs grew stronger.
Sarina realizes many of her limitations and of course, it causes great pain for her. Guiding her in times of deep frustration is difficult.
She was accepted into the program in Napa but soon after she moved there working in a sheltered workshop became her only choice for a day structure. It was the opposite of what she needs. We could not let this happen.
She moved back home again.
Until today we tried different possibilities for her to live away from home. Sarina gained a lot of independence on this journey but the support she needs must be different.
Eighteen months ago, she moved home again and together we moved to Northern California.
We had found a very promising new supported-living program to open a few months later and as if finally, all pieces of the puzzle would fall together a fantastic college program in the same town for students like her. She was accepted to college and is thriving.
Sadly, the supported living program fell apart. Sarina was devasted. I grieved this loss knowing a new home for her will not easily be found.
Frustration can run high at our home.
The harnesses are doing their job. As much as I feel them, I know she is the one feeling them most. All three of us are learning new ways to walk the path that is paved for us. Robert Frosts quote is on my desk.
Every day is a balancing act often on the tightrope.
Photo by Manuela
And every day teachings appear:
“To be fully alive, fully human, and completely awake is to be continually thrown out of the nest.” By Pema Chodron. I can only nod my head and agree.
I find freedom
- In the tiny islands I create for myself. In the early morning hours on my mat I find harmony in my breath, contentment in my body and mind.
- In nature. She is the master of balance. She honors the seasons. She blooms, and she dies and blooms again. I am a tree sister.
- In compassion for myself. When I fail, I know I can fail again with the chance to use awareness to fail better next time.
- In sharing my truth. In the vulnerable moments where the truth hurts so much, I want to hide, but I let courage win and in sharing of my story my heart leaps.
- Trusting all three of us are walking the path we are meant to walk. This path will lead to freedom.
Can you imagine the day all pieces fall together, and Sarina finds her home away from home? It’s worth every challenge we have overcome.
I believe awareness is a truth-finder. With awareness comes choice. Choice offers freedom.
I’m still full of love for life.
Today I choose freedom in my step.
Manuela Rohr is a writer and Yoga teacher/therapist BDY/EY, C-IAYT. With roots in Germany she now lives with her husband and daughter in Santa Rosa, CA. She is the mother of a micro preemie girl and shares her healing journey in her blogs and teachings. She offers her transformational Yoga and Mindfulness lessons in workshops and private sessions. Her newly developed transformational program for special moms like her now has a dedicated private Facebook group you can join: https://bit.ly/2Oa0T60
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