I had a radical conversion at the age of 19. I spent my college years earnestly seeking after God in a Christian community and praying very, very bold prayers.
“God, use me!”
“God, bring your fire, burn up whatever is not of you!”
“Jesus, take all of me!”
Pause for a moment and consider the lyrics of worship songs, sung so fervently and with passion – – these are no mere trifles we are asking of our God.
I had no sense of the gravity of those prayers. I was earnest but ill-informed about the cost of such requests. Someone once came to me and asked, “Can you drink the cup?” And I said, “Oh yes, I can.” We prayed together and she symbolically held a “cup” to my lips for me to drink from.
And then I graduated from college, got married, bought a house, adopted some dogs, worked in ministry and later, started a family.
When I had my first child I was still “going for it” as they might say. Jesus had saved me from a useless existence and I, in turn, had given my life to Him. This life was my reward. Surely bad things do not happen to people who obey the Lord. Cringe-worthy? I would never have said that out loud but it was a false belief system that took residence in my heart.
Marriage was harder than I thought it would be. Transitioning to adulthood brought challenges. I had stresses at work and in ministry and in relationships. Becoming a parent was life-altering. I lost my first child to miscarriage before I delivered a healthy baby girl the very next year. This life, these hardships, are God’s refining fire, thank you God.
And then my baby girl forgot how to use her hands one day. She had been picking up Cheerios since 6 months of age and at 10 months she began raking them with an open hand. She had carefully and purposely turned the pages of her board books and suddenly, truly, seemingly overnight, she was slapping the page, unable to turn it on her own.
Oh, my Child Development degreed mind kicked in, sometimes babies go back a little before they move forward.Maybe she doesn’t want to turn those pages.
She wasn’t crawling until 10 months. Babies develop at their own rate. She wasn’t saying more than four words, “Mama, Dada, dog, arf” and soon she stopped saying those at all. Well maybe she is just going to listen and take it all in for awhile. I began to run out of excuses. She continued to slip away.
By 15 months the pediatrician said we should get her evaluated. She wasn’t walking. Or talking. Or using her hands. I put it off – I had a second baby due any day. By 18 months he said it needed to be done NOW. Just shy of her 2nd birthday, after months of tests, evaluations, and finally genetic testing, she was diagnosed with a debilitating neurological condition called Rett Syndrome.
It sounds so cliche but, my world was shattered. Wanna know a secret? This doesn’t happen to everyone. It happens to many but there are some who move forward, who exhibit a resiliency in the face of heartache and struggle, and whose hearts melt when they realize the gift and honor they have been given in raising a child with special needs. I respect and admire this immensely.
I was not one of those people. My heart went cold with grief. I crumpled to the floor in a heap and stood up as a ghost of my former self. On the outside I rallied the troops and started a prayer group called “Queen Bee’s Warriors”. I researched all of the symptoms of Rett Syndrome and assigned them out for prayer: one prayed against constipation, another against seizures, another for her speech and development, yet another for her to walk – – we prayed against scoliosis, her inability to speak, and the terrible screaming and pain she experienced as she lost skills and disappeared into a world of limitations.
We prayed hard. We prayed in faith. I would not accept anything less than complete healing. And when, within a years time, it did not come; things did not get better they got worse; the prognosis was pronounced grimly at each Dr. visit, my heart became angry and cold.
I felt very, very sorry for myself. I detached from my child emotionally though I never stopped coordinating her medical and therapeutic visits, advocating for her, or caring for her needs.
It took me many years to face but in hindsight it is clear: God failed me. I had given my life to Him and he had thrown it back into my face. First with a miscarriage and then with a child who had life-long, regressive special needs. I had written in my journal during the first week of my first pregnancy, “God, my greatest fears are that I will lose the baby or have a child with special needs”.
He not only failed me, he betrayed me. Was I not His child, had I not dedicated my life to his service, was I not full of faith that He could heal?
During this time, I lived a life “for Him” on the outside while slipping into an inner dark world. At my best I was full of external faith and wisdom and passion. At my worst I was cranky, depressed, and mean.
Here I was, prayers answered left and right (for God to refine me, take all of me, let me do His will) and I was pouting. Can you drink the cup? No, I cannot. I WILL NOT.
So God broke me. He answered my prayers in another way. It got so bad I couldn’t fake it. My children suffered. My marriage suffered. My life fell apart. My faith was in the toilet. There is not enough room here to tell you all that God did to strip me bare.
But strip away the old me He did. He allowed me to repent from fighting Him on living the life of a parent of a child with special needs. And He restored me to a new faith and to my family.
Is my daughter healed? No. Many of those things we prayed against have come to pass. She is recovering after aggressive spinal surgery to correct scoliosis. She does not speak, cannot use her hands, struggles with severe GI problems, and faces a lifetime of 100% dependency on others to care for her needs.
The other day she was crying. I could not figure out what she needed (was it physical? emotional? what??). I cried desperately, out loud, in front of her, with her, “Jesus, please meet Queen Bee! I don’t know what she needs right now but you do! Please come and comfort her.”
And in His grace, he did – – almost instantaneously. That doesn’t always happen. But it did that time. He has not healed her in the way I would have liked in the beginning. He has healed our family from the fracture of grief caused by misperceptions of the kind of life God should give me since I was such a dedicated disciple. And we still have much to learn.
Can I drink the cup?
Dear Jesus, help me sip, day by day, with grace and courage.
Courtney Crow Wyrtzen discovered at an early age the power of words to inform, educate, inspire, and persuade. She lives in Austin with her husband and three children; two of them are typically developing and one of them has been diagnosed with Rett Syndrome. She occasionally blogs at www.one-row.com | Contact Courtney at firstname.lastname@example.org.