In the nearly three years since my son Gabriel was diagnosed with anencephaly the story has become all too familiar. Like 1 in 1,000 parents Roxi Harp Shook was told that her daughter had anencephaly, and if she survived birth she would live for only minutes, possibly hours. Maybe, if she was very fortunate, she would live for a matter of days. Or she could terminate her daughter's life, no questions asked. She could extinguish this tiny, helpless child who was seemingly living only to die.
And like less than 10% of mothers do when confronted with this diagnosis, Roxi selflessly told the medical community to shove it. There wasn't a thing any doctor could tell her to make her give up on her child.
I first "met" Roxi in June 2011. My son Gabriel, born on June 10, 2011 with anencephaly, had unexpectedly survived long enough to be discharged from the hospital. We'd been released with no instruction on how to care for Gabriel's opening. A sister anencephaly mom, Nichole Simmons, recommended I contact Roxi-then-Harp. Her daughter Pearce was living miracle, then four months old after being born with anencephaly.
I can't remember much about our text message conversation. We were both so busy trying to figure out this unique situation of motherhood, trying to figure out how to care for a baby who was born to die.
Gabriel lived for ten precious days, the ten most exhausting days of my life. Without having been there, you can't imagine what it's like to know that your child's life is so very fragile, destined to be so very short, that he or she could leave you any minute, any day. My sweet little boy died at ten days old, having trampled on the odds given to us when he was diagnosed.
But on the other side of the country, Pearce Cheyenne Harp was living and thriving and causing doctors to throw their hands up without answers, the faithful to be renewed with inspiration, and the skeptical to shake their heads in wonder. Pearce celebrated a very special first birthday. . . And then a very special second birthday.
Anencephaly mommies like myself, and those who had their babies even longer, or even shorter, and those expecting their babies soon, looked to Roxi and Pearce with vicarious hope. None of us know how much time we might get. We choose to give our babies life because we don't believe for a minute that life is a choice, but a gift. It is not for us to take. Life is God's for us to place our trust in, and we do place our trust in Him. We trust Him knowing our mother's hearts will be pierced with a sword leaving a wound unlike any other - The wound of the loss of a child. We suffer the ache because we love more than we hurt and we know more than most what a blessing every breath and every moment are.
Somewhere along the line, as we watched Roxi and Pearce live and love we also witnessed the transformation of Roxi, who went from a mother who expected her child to die, to a warrior who knew her daughter would not live forever, but would not let her go without dignity, respect, and a fight. No one would treat her daughter like a lost cause. No one would treat Pearce like she was already gone. Because she was here. She was here, against all odds, for two years and ten months. In two years and ten months a little girl who couldn't walk and couldn't talk changed the way so many see life, love, and motherhood.
When Roxi asked for prayers for Pearce's relief from suffering, I knew what kind of strength that took. I know how hard it is to know that the best thing, the only thing left for you to do for your child is to let them go. I know what it's like to ask your own child to let go of your hand, and take Jesus' hand instead. My heart ached with the memory of letting my own baby boy go as I joined Roxi and Casey and Jim and the family and the world in this prayer.
On December 10, 2013 when I woke up and learned the news, that Pearce had passed after surviving exactly 2 years and ten months with anencephaly, the tears flowed knowing the pain that a family was experiencing somewhere in North Carolina. But even as I cried, my heart throbbed with gratitude for this woman and this child who by their example changed hearts and minds, and saved lives. How many women have decided to continue their pregnancy after hearing Pearce's story? How many minds have been changed to recognize the value of every life, no matter how short, no matter how small? We'll never know on this earth, but we know that this earth is a different place because Pearce Cheyenne Harp was in it for two years and ten months.
A sword has indeed Pearced Roxi's heart. She will never be the same. But I know that this precious ache she is experiencing is one she would never want to live without. That child has left an imprint on this world that will survive long after each of us are gone. I know that Roxi would never again want to live in a world that hadn't been pierced by Baby Pearce.
Powerful and amazing. Prayers continue for everyone who has an angel. <3
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