Ramona Richards

A Child of Salt and Light

Ah, Rachel.

When I decided to include this page, I asked one of Rachel’s main caregivers, Phyllis, what she’d say.

She took a deep breath. “Well, the trick with Rachel is not how to start but where to stop! She’s wonderful! We can say all kinds of things about her, but the truth is, most people won’t believe them until they meet her. Everyone who meets her falls immediately and hopelessly in love. She’s always loving, and no matter how horrid your day is, how rotten your life, 15 minutes with Rachel will start turning things around.”

Rachel started turning things around – or at least topsy turvy – in my life about 20 years ago. In 1987, she was born 10 weeks early, arriving at 14 inches and just over 2 pounds. For perspective, think about the size of a one-pound ketchup bottle. She stayed at the hospital two months and we brought her home in a Cabbage Patch doll outfit. At one year old, she was not much bigger than her cake, still wearing a “6 months” size dress.

Truth is, she wouldn’t gain much size or weight until she hit puberty. But by one year, she’d been diagnosed with severe cerebral palsy, seizures, lung ailments, and a general atrophy of her brain cells. The doctors said she wouldn’t live much beyond 5 or 6, will never learn much, and be mostly confined to her bed.

Yeah, well, God apparently had other plans.

Her oral therapist suggested she’d never eat much by mouth. Rachel ate solid food until she was in her teens. We only switched to tube feeding because she started aspirating too much of her foot, leading to pneumonia. Now she gets 5 to 6 cans of nutritional drink a day, via bolus tube…this means she’s not confined to a pump. We just pop a tube into the button on her tummy and pour away.

It helps on days when trips to school and the doctor, or just running around with Mom or Phyllis wears her out. In this photo, she’s about 3, and as you can see, just back from having blood drawn. Her Puff dragon is about 8 – 10 inches tall.

Rachel’s physical therapist reminded us that children who are similarly disabled don’t like sudden movement or water. This is absolutely true. Then, there’s Rachel…

All in all, Rachel has had an amazingly active life. She loves music, especially The Little Mermaid, and we keep it going for her most of the time. She’s a huge flirt (particularly with deep-voiced men), and loves being around kids. She stayed in our church’s toddler nursery until she was in her teens, and one day, I was asking our pastor if he ever thought God could use Rachel the way she was. After all, we are talking about a child who cannot talk, walk, or feed herself. She can’t read, write, or convey faith.

He tilted his head, puzzled, then took me by the arm and led me to the door of the nursery. He pointed through the window and said, “Watch.”

Rachel was on a cot while the kids swarmed around her. They patted, stroked, and offered her toys. They’d perch on the edge of her cot and “read” stories to her. They asked the nursery workers questions about why her legs didn’t work and could she understand. They knew she wasn’t “normal,” but they didn’t care.

The pastor cleared his throat. “Rachel’s a blessing already. These kids will grow up knowing that not everyone is the same…and that’s OK. God’s ALREADY using her. Don’t second guess Him.”

Haven’t since. He’s opened doors for my writing because of her, and I’m certainly a stronger woman and Christian because of her. When everyone around me was reading The Purpose-Driven Life and wondering what God wanted for their lives, Rachel and I already knew. I believe she’s here to make people think about God. Whether you question Him for allowing her disabilities and the troubles they’ve brought or praise Him for the gifts she brings to us, you’re still thinking about Him.

And the gifts she brings seems endless – from joy and a pure, unconditional love, to challenges about our own expectations, views of death and God, or the value of life, she’s just there, grinning and enjoying those who love her. And, occasionally, doing her imitation of a dolphin…

….famous movie characters (thanks to my mom for sewing the outfit and my friend Jamie for the photoshopping!)…

….or artist.

Rachel’s significant long term memory surprised us all – she’s remembered songs and voices she’s not heard in months, and we changed a lot of her school programs as a result. Rachel does attend school during the regular sessions, then spends summers at home. She has 2 amazing women who help me out – Phyllis and Kim, who make life much easier on her mom. Her dad and I have been divorced since 1993, and I couldn’t have made it nearly so well – or as sanely – without them. (For more about Phyllis, check out the Caregiver’s Soul section on the BOOK EXCERPT page.)

Stopping is the hard part, but I’ll end with this. In 2005, the Make-a-Wish Foundation (with help from the Tennessee Titans administration folks) pitched in and gave Rachel the thrill of a lifetime. She LOVES fireworks, so they arranged for us to be at the top of the Titans’ stadium for the Nashville Fireworks display, one of the largest in the country. We couldn’t hear the music of the symphony, but our little patriot had the time of her life.

They even bought the first tiara.

Someday, God will provide the last one.