Category Archives: Disabilities

For Nora, Who Gives Us Hope.

428881_3634519710730_691058417_nA few months ago  Lauren contacted me on my blog and shared her home birth story about her daughter, Nora, who had trisomy 18. When I wrote back I assumed that Nora had passed away like the other babies with this illness that I know. Nora is fifteen, Lauren replied. I was surprised and grateful that Lauren answered my questions. Yes, Nora has full trisomy 18. Yes, Nora breathes on her own. I was so touched by the story and by Lauren’s openness with me that I dedicated a blog post to Nora. “Trisomy 18: The Range of Possibilities” for Nora, who gives us hope.

Lauren wrote to me on Easter Sunday to tell me that Nora transitioned to her next life on March 16th. She passed away peacefully at home, where she was born, surrounded by her mom, dad, brother, and sister. We laid her out at home afterwards, Lauren wrote. Nora was buried in a natural wood cocoon decorated by her family and friends who visited. (See below.) I sense Nora’s gentle spirit and I love the  way that her family handled her body and burial. Soft. Holy. A gentle ritual for a beautiful daughter, sister, friend.

nora cocoon

My book about my pregnancy with Mary Rose is almost done. I hope to turn in the very final draft by the end of this week. Nora is a part of my book because her life touched my life in that special we-are-one-with-everything-in-the-universe way that the mystics speak of in different spiritual traditions. I used to be surprised by the synchronicity of my life, but now I just smile and say, Thank you. I am now friends with my Isaiah Promise mentor Cubby’s daughter, Mary Frances. I am friends with Laura, a woman I had seen at the Farmers Market when I was pregnant with Mary Rose. Everywhere I turn I am connected to others by beautiful threads of light.

It is not only the Hindus who say that life is a dream. My maternal grandmother used to say, Η ζωή είναι ένα όνειρο. Life is one dream. It won’t be long before we are all together with our loved ones on the other side of the veils. Until I meet you at the holy gate, Nora, please give Mary Rose and Cubby a hug from me and Mary Frances. Thank you for your far-reaching Light and presence in our lives.

 

Photos used with permission of Lauren Sample.

Meeting Laura: Synchronicity & the Heart

IMG_1101I see a woman in a wheelchair at the Farmers Market. She looks different. Her limbs are not like mine. Behind her walks a woman. I assume that this is her mother. I am pregnant with a baby who will die of trisomy 18 and I put my hands on my womb as I watch these two women going through the market. It is summer in Suffolk, Virginia. Could that ever be us? Would my baby live long enough to be in a wheelchair? Would I take her anywhere at all? I think about my unborn daughter’s weak muscle tone, the multiple defects in her heart and brain. No, I decide. Mary Rose and I will never share a morning like this.

Have you ever seen someone who stays on your mind or in your heart for months or years? I wanted to say something to this woman at the Farmers Market, but I was perpetually near tears. What could I say? I sent love to both women and tucked them safely into my heart. A few months ago I got a Facebook message from Laura Robb, the woman I had seen in the wheelchair that summer of 2014. I looked at her picture in disbelief as I read the message from a fellow writer. She said that she lived a block away and so we met for a walk.

Since carrying Mary Rose, I am more sensitive to people who are different. I notice children on the playground with Down Syndrome. I make eye contact and engage as best I can in each moment. But meeting Laura has shown me how judgmental I am. I made assumptions about her mobility because she uses a wheelchair. Laura is teaching me to stop my mind from categorizing everyone I meet. This is our brain’s function. We want to put people in boxes and categories so that we can make sense of the world around us.

Only I can’t make sense of why almost everyone in my circle has given birth to only healthy babies except me. I can’t understand why my former student’s brother and young niece and nephew were killed in a car crash in Connecticut. I read Mother Gavrielia again. “If God wills it or allows it,” she says, “then it is the best thing for our souls.” There are moments when I can accept her words, but not always. What I do understand is that our planet could use more compassion. I have written a lot about support for the grieving, but what about the babies, children and adults who live, look and act differently from their peers? How do we support the parents whose child screams during liturgy because of a diagnosed disability? Do we offer help or ask them to remove their child from its community?

I asked Laura to forgive me for not inviting her into my house when we walked that first time. I assumed that she could not climb the two steps into my home. I was wrong. Laura recently launched a beautiful website that says “It is time for you to live beyond your limits.” We are both writers. We both blog. We both order greens from Neighborhood Harvest and we live in the same neighborhood. To look at us, you would not think that we have so much in common. Laura is on the paleo diet and I drop off a paleo pecan cookie.

If we as humans sit with those whom we judge, the ones who make us uncomfortable, even people whom we shun or hate, we would find commonalities. Who knows what we have in common with immigrants, Muslims, disabled adults and differently-abled children? What about our neighbor whom we barely wave to as we continue on with our busy day? Opening my life and heart to include Laura blesses me with her exuberant energy and light. I am changed. We can be better together. We can grieve and love together.

Let’s start by looking into each other’s eyes. If we still the mind, then we can be guided by the heart.

 

To read more about Laura Robb please visit her website www.lauracrobb.com

Photo Credit: Jean Robb