Hope,  Hydranencephaly,  Special Needs Parenting,  Unexpected

In Defense Of…

Tears slid down my cheeks in a steady flow, creating tracks through my makeup and collecting at my chin until they released in fat droplets. The grey of my dress darkened where each one splattered on the fabric. I occasionally wiped at my chin, involuntarily brushing away tears that tickled my skin. I sat with my husband and our adoption social worker, and together we faced a selection of hospital representatives. The table was large for our small group, able to fit double the amount of current occupants. I was thankful that the wide span of the table created a gap between us so that I didn’t have to sit any closer to the people who delivered the devastating news.

My sniffles interjected as the doctor spoke about our daughter’s prognosis. I halfheartedly wiped at my eyes with a proffered tissue, but the stream would not stop. My hand dropped back into my lap, wadding the tissue nervously and letting the tears fall at will. While the group was supposed to be a team, it felt like us versus them. The doctor told us the reality of what we were choosing with this adoption, and the picture she painted broke my heart. Half of me wanted to tune out of the conversation, not wanting to bear its weight, and the other half of me wanted to hang on to every bit of information presented so I could prepare myself. She spoke with confidence, a straightforward explanation of the facts. She spoke as if someone experienced with children like my daughter, and I believed her because this was the top children’s hospital in the state.

I left that conference room with the belief that my daughter would pass away within the year, and multiple doctors confirmed this idea in the months to come. Their lack of hope and my acceptance of it created a dark shadow across our lives. These experts, people in white coats whose advice I had followed, these trusted people gave me no hope, and too often callousness and misinformation as well. But I was lost in a fog of fear and grief, so I explicitly trusted them. I did not second guess these doctors, but stumbled forward, determined to love our daughter in the painfully finite time we expected.

The memory of that day, of being enveloped by fear and grief, came flooding back this week as I scrolled through social media and encountered someone who used my daughter’s condition in defense of a woman’s right to choose late-term abortion. It crushed me, and the tears slid down my cheeks again, unbidden and uncontrolled.

She didn’t know about my daughter, she and I were just two people connected by a mutual friend, respectfully sharing opposing viewpoints on social media. She didn’t name my daughter’s condition, but she described it in the same layman terms that doctors gave us. The woman described her friends, the devastated parents, and stated that ‘going full term wasn’t an option.” And I cried because I know that devastation. I know the medically presented prognosis, the hopelessness, the pain of shattered dreams. It’s heartbreaking and soul-shattering.

But now I know so much more. I know the joy that bubbles up every time I see my daughter smile. I get to celebrate each hard-earned milestone and cheer on each hard-fought therapy session. I know the weight of her in my arms, once tiny and now heavier than her big brother. I see her love of Mickey Mouse and our oldest son. I know the way her face lights up at the sound of her daddy’s voice, and the pouty lip she makes when she’s upset with me. I know that this little girl has changed everything about our lives, and I’m thankful she has. She is strong, resilient, and determined, and defies expectations. My daughter is the embodiment of hope and the beauty of life, not a case against it.