I had another dream this weekend that I missed the birth of my baby. In this one I drank till I blacked out, like back in high school, and woke to learn I'd given birth. I didn't remember a thing and broke down in tears to Nick who tried to reassure me, "But she's OK... she's OK."
"But I don't remember anything about her birth," I sobbed.
Two similar dreams in a week.
As I get closer to Olive's arrival, I find myself reliving Elias's--and the terror and grief that still rides in my cells seeps into my sleeping stories.
As they wheeled me away from Nick, and I lay on the gurney on my way to the surgery room, my legs shook so much I could hear them bouncing off the metal frame. I couldn't control my body. Couldn't erase the image of the nurse's face when she looked inside me and saw Elias's 24 week old foot. Nor the frantic activity that followed. No time for thought. Emergency C-section. Now. I wondered how the medical staff could hear each other above the incessant drum of my heart, the shake of my legs, how would they still my body enough to save him. My body that failed my baby boy.
"We're going to put you to sleep now," the anesthesiologist said.
And then nothing.
Nothing.
Until a doctor sat by my side and told me Elias was alive but she wasn't sure if he was going to survive.
And I pause now to catch my breath.
I find my heart rate rising as I write and need to remind myself that I'm not on that gurney. Today I am 36 weeks pregnant with another child. If Olive arrived tonight, her chance of surviving without long term consequences is extremely high. You're in the clear, I've been told.
But I know too much to believe this. Or maybe my past won't let me breathe a sigh of relief. Along with my night dreams, while awake, I keep flashing on terrible outcomes. She could still die, I think. And maybe all pregnant women have these fears as the day of birth approaches but as someone whose first child wasn't expected to survive, I cant seem to shake death's shadow. Hope and Faith and Belief that I'll bring Olivia home join the Grim Reaper, making my head awfully crowded at times, with the din of their competing views. I try to give them all space without dwelling too long on any one possibility. There is no known. No guarantees in parenthood.
Even if I do bring my baby home.
The reason I haven't written a post since Thursday is I've been lost in the diverse voices collected in the anthology My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities. Two copies arrived in my mailbox Thursday afternoon, contributor's gifts, as the book includes my first published essay about Elias.
And with only a few essays left to read, I'm honored to be included in this collection of stories that captures a wide-range of voices of parents who do not easily identify with the mainstream. Parents who don't have answers. Who speak their truths, even when others want to smooth the edges of our words. Or wrap us in packages of accolades with sugar coating. As Lisa Carver writes in the introduction:
"The various authors in this anthology may not have any cures to offer, but they have something infinitely more valuable: no cures. Understanding. They, too, have experienced society's impossible-to-fulfill expectations (demands) for parents of special needs children.
1. For actions: We must do everything we can to help our children to change what is different about them, make it *undifferent*, so they can integrate, so they can be as normal as possible. (To do that *we* need to be normal first.) We must reprogram our children, go against their nature itself. Constantly. It would be considered emotional abuse to do that to a "normal" child, to tell them everyday in many ways they cannot be who they are.
2. For attitude: What can't be changed, we have to look at as a gift, God's way of teaching us patience; God gave us this child because He knew we had enough love to handle it. (To keep that positive attitude up in the midst of all this crap one would have to be a total hypocrite, or on massive amounts of Xanax.) We are not allowed to be angry.
For our child there are therapy, surgery, medication, and aides (home and school) aimed at achieving that first goal.
For our attitude, there are guidebooks and memoirs to help get that one right.
This book is not one of those."
As someone who has shared Elias's story for five years now, through the lens of my own growth as his parent, I can relate to these words. If I don't allow myself to rage against my circumstances, then I can't taste the beauty. Can't eat delight for breakfast as I sit next to by multiply disabled son. Elias: the boy I love more than chocolate, as is, which is why a part of me rails against our life of therapeutic and academic goals, just as another part of me agonizes over what more we could do to help him gain skills.
As Elias's mom I find myself walking between worlds, unsure where to land.
The editors of My Baby Rides the Short Bus, Yantra Bertelli, Jennifer Silverman, and Sarah Talbot, write in the Foreword:
"Disability forces us to reach back toward the mainstream while moving us irrevocably outside of it. We might have been planning to put our children in small alternative schools before we knew they were disabled, and now, after diagnosis, find ourselves fierce advocates of their inclusion in traditional classrooms. While we might have had home-births planned, we may spend years in hospitals praying for the success of invasive medical procedures. While we might have fantasized about anarchist communes before our disabled babies entered our lives, we find ourselves lobbying the legislature for increases in funding to state bureaucracies. We, who had previously rejected the institutional structures of mainstream culture or found ourselves on the margins to begin with, discovered that we are clinging to the slim hope that they will save us after all."
Oh yes. Can I relate. If I've learned anything over the years, as Elias's Mama, its that our grandest plans, our expectations, our resolutes, are all made of sand after all. And its up to us to rebuild our castles, with the help of our children, again and again, after every storm. After the unexpected wave destroys the structures we built to define us, we just need to start digging and remain open to what we might find.