• Family,  Hydranencephaly,  Love,  Special Needs

    Live and Love Without Words

    We have the privilege of celebrating another birthday with our Wonder Woman, who has just turned four. Four more celebrations than she was ever supposed to have, according to a misinformed medical community. I am at a loss for words, which is inconvenient for me since this blog is specifically for writing. But when I think about how far she’s come, it doesn’t feel like the right words exist to describe her journey, her strength, or how she’s changed us, and that’s fitting since she lives and loves all without words. As a writer by trade, it’s odd for me to experience something so ineffable. I always search for the…

  • Hydranencephaly,  Special Needs,  Special Needs Parenting

    What I Wish You Knew

    When my daughter was a month old, we took her to an emergency room in Texas. Her adoption had occurred in another state, and we used the out of town opportunity to visit family. Before leaving her home state, we expressed concerns regarding her head growth and demeanor to doctors, but they told us to keep an eye on it and sent us on our way. A week later, we felt our daughter’s extreme discomfort and increasing head circumference warranted an ER visit. That night our daughter was transferred from the military hospital to the local children’s hospital. She experienced her first ambulance ride, as did I, and we found…

  • 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…

  • Depression,  Faith,  Grief,  Hope,  Life,  Special Needs,  Special Needs Parenting

    Driving in Fog

    The fog blew in gusts across the road, walls of white, stark and blinding against the black of the night. Headlights blinked into existence between patches of fog but disappeared as another cloud quickly rolled in. The field of vision was limited to a stone’s throw past the hood of the car. It felt isolating, like driving in a white bubble. In a vain attempt at better visibility, the driver turned on the brights. We were met with their blinding reflection against the fog and immediately switched them back off, a predictable outcome. Hunching over the steering wheel, squinting, the driver involuntarily tried anything and everything hoping for clarity. White…

  • Adoption,  Depression,  Faith,  Family,  Grief,  Hydranencephaly,  Life,  Love,  patience,  Special Needs,  Special Needs Parenting,  Unexpected

    National Adoption Month

    November is National Adoption Month. It’s also the month that Wonder Woman was born, and marks the day we heard those life changing words over the phone, “She is yours.” My cell reception was awful that night and the audio cut in and out as I paced across blue kitchen tile and said her name over and over to our social worker, hoping she would accurately hear it. This name was treasured by us and had been held in my heart for years as I waited for a baby girl. The most important thing—the only thing—I could do for our little girl right then was give her her name. Despite…

  • Adoption,  Faith,  Family,  Hope,  Hydranencephaly,  Life,  Special Needs,  Special Needs Parenting,  Unexpected

    Impossible

    “It’s impossible.” I told God. Well, I didn’t tell him those exact words, my actions did. I stopped praying for something that’s been heavy on my heart. I gave up hope. I know he’s the God of miracles, but I’ve been praying for years and this thing felt too far gone. I became frustrated praying for something that repeatedly went unanswered. My persistence didn’t seem to pay off, things are no better than when I started praying. It is extremely hard to have faith in God when it feels like he’s letting you down. My mind attempts mental gymnastics to not face the reality that God can simultaneously be sovereign and…

  • Adoption,  Depression,  Family,  Grief,  Hydranencephaly,  Life,  Pressure,  Special Needs,  Special Needs Parenting,  Unexpected

    Red Rover

    It was sunset, and I was driving south down a long road. Looking to the west out my passenger window I could see for miles. There was an unobstructed view of the mountains, silhouetted and backlit by a gorgeous orange glow. The sun had sunk below the peaks, its radiance shining upward, turning the sky into a stunning display of colors, blending yellows, oranges, pinks, and purples in an ombre affect only God could create. Out my driver’s side window to the east the view was dark, mixed hues of purples and blues, and lit by the bright orb of an almost full moon. Beautiful in its own right, but…

  • Adoption,  Depression,  Faith,  Family,  Grief,  Hope,  Hydranencephaly,  Life,  Pressure,  Special Needs,  Special Needs Parenting,  Unexpected

    What Happened in the Fire?

    I don’t know why it’s so easy to flippantly read about God’s miracles. Why don’t I get excited and jazzed every time I read about how he healed a blind man with spit or commanded the wind and waves to be still. Maybe it’s the unintentional byproduct of growing up in church that somehow these stories become “normal” to me. There’s nothing normal about the miraculous. You might be familiar with the story of Shadrach, Meshach, and Abednego. It’s found in the third chapter of Daniel in the Bible. It’s one many children hear growing up, which is interesting because it’s just one chapter. Their names are mentioned in the…

  • Adoption,  Hydranencephaly,  Special Needs,  Special Needs Parenting

    One Year Later: A Medical Update

    We have now had Wonder Woman in our arms for a full year. I can’t wrap my head around all that has happened, all that we have survived together. As many of you know, and we haven’t been shy to share, it was statistically unlikely that she would live for a whole year. I’d like to take this time to update you medically on where we are at, what her future holds, and answer what I can about her prognosis from this point on. To say that it was unlikely she would reach her first birthday to me rings as both true and untrue. Because her system is so fragile,…

  • Family,  Hope,  Hydranencephaly,  Life,  Love,  Special Needs,  Special Needs Parenting,  Unexpected

    Happy Birthday, Wonder Woman

    When I was a little girl, my family visited Omaha Beach in Normandy, France. Though I understood very little about the significance of the location, I have always remembered the trip. Specifically, I remember running with children of different nationalities up and down into grassy spaces that seemed like bowls carved into the ground. I remember my mother telling me that those bowls were craters caused by bombs from WWII. I didn’t understand the significance, my six year old self couldn’t imagine the type of destruction that could leave permanent marks in the earth decades later. I couldn’t comprehend the death, the grief, that each of those craters caused, rippling…