Fear to Joy: A Daughter I (Never Thought I) Needed
“All our fret and worry is caused by calculating without God.”
Oswald Chambers
Two pink lines. A shocking, yet exciting, surprise as our first daughter was barely four months old. Several months later, my husband and I drove home from the anatomy scan, thrilled at the news of a second baby girl. I stopped in my tracks when the doctor called to report that the scan of the baby revealed a major heart defect, along with other abnormal findings. Fear took deep root when experts encouraged more extensive and invasive testing to identify a suspected underlying genetic condition.
They advised us to pursue immediate testing if the results would cause us to terminate the pregnancy. Our hearts shattered. As the Giver of life, we knew abortion was not God’s will. We chose to defer any invasive testing until our daughter was born. This decision meant intense wrestling with God for another six months. A life-altering genetic diagnosis—I yelled to God—was beyond what I could handle and absolutely not what I desired.
One night, with tear-soaked eyes, I begged the Lord to spare me from birthing a severely disabled child. When I envisioned my future, this was surely not a part of the picture. What would others think? Would I be embarrassed of my own child? Would life now be a constant struggle caring for her? The questions never ceased, and the fears continued to grow. But behind the scenes, God was beginning a mission of grace to transform my greatest fears into a deep source of joy.
I delivered baby girl Blair into a crowded room milling with doctors and nurses. Her heart needed repair, but mine needed something more that only the Lord could provide. They laid her on my chest as she took her first breaths. The moment is etched deep in my memory. I gazed upon her face and knew that I was staring at the one thing I told God I could not bear. I did not want this; I did not want her. These feelings loomed like dark clouds. I felt a deep shame to even voice these emotions.
For the next few weeks, Blair struggled to eat and breathe simultaneously. In despair, I finally came to grips with the reality that she was not able to breastfeed. We labored for every milliliter she consumed by bottle, only to see it come back up all over her clothes and the floor. She failed every newborn screening, and each day brought increasing discouragement.
Eight weeks later, the genetic test results returned. It felt like a death sentence: Cardiofaciocutaneous Syndrome. A rare genetic mutation. A diagnosis that we already began to realize would affect every system of Blair’s body. Our daughter faced a future full of difficulty. This devastating news mysteriously represented a turning point. Finally, an ounce of clarity amidst so much confusion.
As weeks turned into months, my heart changed. I’m not quite sure how it happened. Circumstances remained bleak, but the crippling fears I anticipated just did not take hold. The disappointment I thought would paralyze instead inclined my heart to Jesus. His Spirit brought truth to mind in hard moments. When nothing else made sense, I could trust that he knit together this precious child and knew every detail of her being. My eyes began to see his provisions and delight in her as a precious gift. I sensed his protection about me when tempted to compare Blair to other children. I felt released from basing her worth upon developmental milestones. I felt free to see her as made in the image of God. I slowly and daily learned to entrust her to him, knowing that his love and care for her infinitely surpassed my own.
The years that followed feel measured by various medical hurdles. I grew comfortable watching my daughter’s face and nail beds slowly turn blue as she held her breath for unnatural periods of time. These events led to lengthy hospital stays—a revolving door of tests to narrow in on the cause. Countless opportunities to kneel before the throne of grace and plead for wisdom and discernment. Countless opportunities to worship our faithful Father.
Blair’s needs are obvious at times—hearing aids, glasses, a wheelchair, and other adaptive equipment. She does not eat by mouth but instead receives tube feeds and medications multiple times a day. Other challenges remain unclear. She struggles to recognize faces and objects. She is non-verbal. She cannot sit on her own for more than a few minutes before her weak muscles give way. She vomits frequently and requires constant bathing and changing.
By worldly standards, Blair is little more than a burden. By God’s grace alone, Blair has become one of the greatest sources of joy in my life. With every smile and giggle, my heart bubbles. I cannot pinpoint an exact moment my heart changed—an accumulative effect of his patient commitment to my sanctification. The dark valley has made the light seem brighter. When facing my greatest fears, I learned the character of God.
What would others think? The opinion of others pales in comparison to the truth that Blair is made in the image of God.
Would I be embarrassed of my own child? When others stare at her tube during mealtime, I jump at the chance to share about Blair’s differences and teach compassion toward those with special needs.
Would life now be a constant struggle caring for her? Of course. But it transforms my perspective when I fight to remember that every long commute to the hospital, every load of laundry, and every diaper change and bath is an opportunity to bring glory to my Father in heaven.
Life with Blair is hard. Even so, my heart is soft. When I hold her, I feel the nearness of Jesus. Like a beautiful sunset or a mountaintop view, my mind is overwhelmed by his beauty. When I ponder our journey with her, I am in awe of God’s goodness. Only his grace can do this.
