| The moment I first saw my daughter Elizabeth, I knew | | | | no use in letting myself get overwhelmed with despair |
| we were in trouble. "Her head looks so small," I thought, | | | | over what Elizabeth might not be able to do in the |
| "so deformed." After viewing a CAT scan, the | | | | future. Today's tasks were what I needed to tackle. I |
| neonatologist said, "Your daughter has profound | | | | was told Elizabeth could die unexpectedly at any |
| microcephaly-her brain is extremely damaged and has | | | | moment. I could die at any moment for that matter. |
| calcium deposits throughout. If she lives, she will never | | | | What was the point of losing my sanity fretting about |
| roll over, sit up, or feed herself." As the weeks turned | | | | tomorrow? The Scripture that helped me stay |
| into months, the doctor was proven right. | | | | focused was "Perfect love casts out fear" (1 John |
| "My life is over," I thought after hearing his initial | | | | 4:18). Although I prayed for a miracle all the time, I |
| pronouncement. But as the months turned into years, I | | | | began thinking that I needed to concentrate on loving |
| was proven wrong. Recovering from the shock and | | | | and caring for her at that moment and not dwell on |
| horror over your child's prognosis takes | | | | what tomorrow could bring. |
| determination--but mainly, it takes love, forgiveness and | | | | Writing also gave me the courage to handle the |
| humbly accepting help from friends and strangers. | | | | realities of my life. My career as a writer began with a |
| Despite wrestling with God the first year with "Why | | | | series of form letters to my family and friends to |
| me?" (I had caught cytomegalovirus--CMV--when I | | | | update them on how Jim, my older daughter, Jackie, |
| was pregnant with her), I was often comforted by an | | | | and I were doing after Elizabeth's birth. It was much |
| act of kindness from a stranger (I always attributed | | | | easier to write about our circumstances than to wait |
| God with sending me that person) or from a particular | | | | for loved ones to ask me terribly painful questions like, |
| Scripture that seemed meant just for me and my | | | | "How are you doing emotionally?" or "What is |
| particular anguish at the moment. The first several | | | | Elizabeth's prognosis?" or "Is she sitting up yet?" I could |
| months after Elizabeth's birth and diagnosis, I wallowed | | | | not bear reflecting on those topics over and over |
| in the bitterness and suffering of others, especially in | | | | again. I preferred to let everyone know what was |
| the Bible where I found Scriptures like, "My days have | | | | going on through my letters, so that when we spoke |
| passed, my plans are shattered, and so are the | | | | by phone or face-to-face, we could speak of more |
| desires of my heart." Job 17:11 | | | | pleasant matters. My soul needed to see cheerful |
| My first prayers for Elizabeth, other than that God | | | | faces around me, not ones filled with awkwardness |
| would heal her immediately, were that I'd love her. | | | | and pity for our plight. |
| What a horrible thing for a mother to have to | | | | I sat Elizabeth on my lap while I pursued my newfound |
| admit--that she needed God's help to love her own | | | | passion. As time went by, and I began to appreciate |
| child. My husband Jim, on the other hand, loved her at | | | | Elizabeth just the way she was, I no longer focused on |
| first sight. "She needs me," he said. | | | | her doctor appointments and what the doctors had to |
| Elizabeth's nurses were to first to spark feelings of | | | | say, but on "normal" family events. Within a year after |
| love in me toward Elizabeth. "Look, she loves to have | | | | her birth, I began writing stories about the lighter side of |
| her head rubbed," one said as she held her in the | | | | our lives. |
| crook of her arm and rubbed the top of her head with | | | | Elizabeth nestled on my lap for hours watching my |
| her free hand. "Take her home and enjoy her-try not | | | | words fill the computer screen in our laundry room, |
| to worry about what her future holds. Just take it one | | | | which also served as my office. She loved the gentle |
| day at a time." | | | | movements my arms made while I typed. Since writing |
| But once home, I was so depressed I could barely | | | | soothed my soul, perhaps getting my stories published |
| function. All I could do was rock Elizabeth and listen to | | | | would soothe it even more! I bought "The Writer's |
| sad music about others who endured indescribable | | | | Market," a fat book full of publishers and "How To's" |
| suffering. I immersed myself in the Book of Psalms. | | | | and began my life as a freelance writer, getting stories |
| Before Elizabeth was born, I really couldn't relate to the | | | | published about Elizabeth and congenital CMV, as well |
| Psalmists. I thought, "Wow, those people are really | | | | as lighthearted "slice of life" stories about our family. |
| depressed!" Now, I found comfort in their bitter | | | | Little did I know that Elizabeth too would benefit from |
| questions, such as, "How long must I bear pain in my | | | | my need to share my thoughts. When my story about |
| soul, and have sorrow all the day?" | | | | her, "Elizabeth: A Christmas Blessing," appeared in |
| If I was ever to move forward and find happiness | | | | magazines and newsletters, she began receiving fan |
| again, I knew I had to stop dwelling on the | | | | mail! One young man, an inmate who was handed a |
| unanswerable questions that kept popping into my | | | | copy of Celebrate Life magazine in his jail cell, began |
| head like, "Why would God let me catch CMV?"; "Why | | | | writing to Elizabeth regularly. I had no idea if she |
| didn't my OB/GYN warn me about this?" and "Who did | | | | understood the words I read to her from her pen pal, |
| I catch it from?" (Congenital CMV, which causes more | | | | but she loved to watch me rip the envelop open and |
| disabilities than Down syndrome, can be avoided if | | | | unfold the papers in front of her. The prisoner's words |
| women of child-bearing age wash their hands often | | | | to Elizabeth were full of hope. He repeatedly told her |
| when caring for children under six and if they refrain | | | | that God loved her, and like him, she would be set free |
| from kissing them around the mouth.) | | | | one day. |
| It took Elizabeth a couple of months to figure out | | | | Sharing my feelings with the public made me feel less |
| where my face was, but then one day she looked | | | | alone in my world of raising a severely handicapped |
| directly into my eyes and smiled-we had finally | | | | child. C.S. Lewis, author of "The Lion, the Witch and the |
| connected! I gradually began to think, "If she doesn't | | | | Wardrobe," said, "We read to know we are not alone." |
| care that she's severely mentally retarded, and, apart | | | | Perhaps that was why I found writing so |
| from a miracle, will never walk or talk, why should I be | | | | therapeutic-not only did it force me to put words to my |
| so upset?" Maybe it was my prescription sedative | | | | feelings, making order out of the chaos, but when I |
| talking, but that thought stuck with me, even when I no | | | | threw my thoughts out to the public and got a |
| longer needed "mother's little helpers" to get me out of | | | | response, then I knew that I wasn't alone. And more |
| bed and into the shower. | | | | importantly, that Elizabeth, who could not reach out to |
| I decided to follow the nurse's advice and just think | | | | others through words or touch because her cerebral |
| about Elizabeth's care one day at a time. There was | | | | palsy was so severe, was not alone either. |