The ultrasound was our first opportunity to see our child. The discovery of our baby’s sex was a glimpse into who this person is. Then came the day when the discovery told us not only that this was our son, but his journey would take us on a path we had never experienced before.
It began with a cleft lip/palate, then he was diagnosed failure to thrive and hospitalized, then we learned his condition was genetic. The day we learned that, as another baby grew quietly inside me, we wondered how we could possibly manage. Her ultrasound arrived and our road turned again. Our daughter was growing without a brain.
For many, that day of diagnosis marks the first day of a series of crises, the first turn in a series of turns in the road. The shock and intensity might have carried me away, but there were things I practiced that grounded me, gave me focus, and helped me to embrace the present moment is a form of mindfulness uniquely Catholic. The prayers and teachings of the Church lifted me up, the psychological practices steadied me. Journey in Love: A Catholic Mother’s Prayers after Prenatal Diagnosis (Available now at Our Sunday Visitor) is the fruit of that search, a companion to walk with mothers facing the same direction, a resource for those who love them and want to support them. Continue reading for a glimpse at this journey.
How Will You Live?
Maintaining a Sense of Self Apart from the Crisis
The anger boiled up inside me to the bursting point. Sick of the heartache, sick of the tears, sick of the suffering, I felt my rage spill over. To the nurse, I proclaimed, “I’m taking a break!” Storming out of my son’s hospital room, down the elevator, and out the hospital doors into the bright, clear sunlight of a warm San Francisco day, I began to walk. In a fury, I walked and continued walking until the rhythm of the steps overcame my thoughts. The pace of my breathing outstripped the emotion surging in my heart. I kept on walking until my eyes could look outward. Buildings, the sky, came into focus. I felt the breeze again. The scene around me glowed with color. I felt curious.
In the autumn, Rebecca visited my son’s hospital room daily. She inquired after my watercolor paintings, the dabbling I had taken up to pass the time; we talked about design as I showed her tile samples; we talked about psychology; we talked about the difference between social work and psychology. She gave me something unique in those days when every- thing concerned my baby: she gave me a sense of self.
At Christmas time, my husband bought me a mat cutter, a large four-foot-long tool used to cut mats for picture framing.
As though I was playing a game of Twister, I maneuvered my pregnant body around a crowded office framing anything and everything I could. My thoughts flowed over the numbers, the mathematics, the art of color, shape, and size, the hunt for antique picture frames. Every bit of it took my mind off my present circumstances and made me feel alive again.
Pregnancy is consuming. Motherhood is consuming. Then add the complicated nature of a prenatal diagnosis: more appointments, more miles driven to see specialists, more purchases, more plans, more worries, more adapting of one’s home to accommodate needs, more adapting of one’s heart to expect the unexpected.
In the hormonal, bodily, and cognitive changes of pregnancy, as the presence of the little one inside you saturates your awareness, it is all too easy to crowd out aspects of pregnancy unrelated to little ones. Your heart is disposed to give everything you possess to your infant. Yet you also embark here on a very long road as a caregiver or as a grieving mother. The road is long and tiring. Adopting self-care routines now can buoy you up for the season when the bad days seem to outweigh the good days.
We are physical, emotional, relational, intellectual, and spiritual beings. Each of these dimensions must be fed. The pressure to care for oneself physically during pregnancy is unavoidable. But when a prenatal diagnosis is life-limiting, it can be easy to stop caring, to give in to the whims of eating or drinking, to stop exercising and start loafing. We hurt. We’re tempted to give up because the reasons not to strike us as useless. “Why not drink?” I thought. “She doesn’t have a brain.” So I drank to numb the feelings of grief.
Your emotions need to be felt, expressed, and processed according to your needs. You might need to journal, to talk to a friend, to seek out a spiritual advisor or a counselor. A counselor from our hospital’s palliative care team accompanied me through my grief process with weekly phone calls.
Relationships may mature, suffer, or fall away, but you need people in your life. You need a team behind you — with you — to help you face what lies ahead. Some fear that sharing their sorrow is simply complaining, but complaining is a distortion of the real need. Begin by sharing openly and honestly with a person you can trust, whose sympathetic responses al- low you to feel, flourish, and find grace. Lighthearted friends who were experienced in the art of nonjudgmental acceptance took me out or sent me emails, according to my need.
You are a whole person capable of learning new words and new skills. The doctors will teach you what your child will need, and you are capable of managing it. In the meantime, you can learn other things as well. A calligraphy workshop and a watercolor workshop filled my soul with light as I embraced the power of beauty and dedication to a new skill. Mat cutting, walking, and reading fed my intellectual capacity. I found myself pushing back the depressive response, alive again.
It was hard to stand in a church, to stare at the tabernacle and the other families — the places and hearts that were full — and not drop into the gulf of anger and hatred of what was happening. God reached me instead through my other human faculties, through skills, hobbies, and an appreciation of beauty.