As promised, here is another excerpt from Raising God's Rainbow Makers, my next book, which is currently in progress. Comments welcomed and adored! I prefer to get comments, especially negative ones, before publication. After publication is a bit late!
Although Noelle was our second child, she was chronologically the first child to introduce us to the world of exceptional children, a world in which we would live forever thereafter. Lizzie would do that in a different way a couple of years later, but at the time that Noelle was born, we did not know that Lizzie was gifted; all we knew was that her stages of growth did not match the baby manuals, so we threw them all away about the time she was a year old. Therefore, when Noelle arrived, we did not even try to find a manual for her, but we did read everything we could find about spina bifida and later, hydrocephalus, and after that epilepsy. In between we learned about lesser concerns: a neurogenic bladder, lack of bowel control, colostomy care, range of motion exercises, breastfeeding a special needs baby, and on and on — a number of things which I have fortunately forgotten and another number of things that are too numerous and relatively minor to include here.
When you have a child with a life-threatening birth defect, you can feel very alone. This is especially the case when grandparents do not step up to the bat. Both sets of our parents were shocked by Noelle’s birth and immediately began professing that “their” side was not to blame. Our parents’ finger-pointing at each other, rather than their jumping in to help us, isolated us even more in the days of Noelle’s early surgeries. We, in contrast, blamed no one. We did not blame either set of parents; the appearance of spina bifida is a matter of both parents having some genetic weakness. We did not blame the obstetrical doctors for not warning us: at that time in history, there was no way they could have known. We did not blame ourselves: we had done everything we could to ensure a healthy pregnancy. We did not blame God: we did not know God existed. So, there was no need to ask “Why us?” “Why not us?” would have been an equally good question. Gene selection is a matter of chance; every biology student knows that. The need for our parents to place blame, however, tore away from us a potential source of support.
We did have solace and help, fortunately. They came serendipitously to us in the form of friends. As in childhood, in adulthood I gathered friends around me. I may have been an atheist in mind, but in heart I was surrounded by God’s influence through friends, many of them believers and most, if not all, of them bringing me comfort and giving me the opportunity and pleasure of helping them. As someone (wish I knew who it was) once said, friends are God’s way of taking care of people on this earth.
Some friends helped out with action. The hospital where Noelle was born could not handle her medical problems and so airlifted her from San Angelo, Texas, where she had been born 250 miles south to Wilford Hall Medical Center at Lackland Air Force Base in San Antonio. I signed myself out of the hospital that same day over the medical staff’s objections, and Charles and I headed south. It turned out that Noelle would need multiple surgeries and we would need to spend several weeks in San Antonio. I called friends at Ravalli Federal Credit Union in Hamilton, Montana, where we had our savings account, and the treasurer not only made out the check the same day but drove it 50 miles north to the Missoula post office so that it would go out by air immediately, rather then wending its way by ground to Missoula and then on out.
Other friends provided emotional support. When many people did not know what to say upon hearing of Noelle’s birth defects and met the birth announcement with silence, David and Diane Edgerly (Dave-Bear and Di, as they were known to Lizzie, our oldest daughter, whom they had frequently babysat) responded differently. NCOs in the U. S. Army (yes, I was a sergeant in the U. S. Army when Noelle was born and, while she slept in a baby chair beside me, was promoted to officer ranks, the only person ever in the Army with the dubious distinction of having stood a direct commissioning board in maternity clothes), Dave-Bear and Di had recently been transferred to Germany, but as soon as they received the birth announcement, which included the information about Noelle’s condition, they wrote a very simple note that gave us great heart and a very warm feeling, the first in a long time: “Welcome, Noelle; Dave Bear and Di love you, too.”
So many people helped then and later. All along the way we have had the support of friends, and so have our children as they have grown. Amazingly, these friends have been grateful for the opportunity to help. Even strangers have helped on many occasions and have clearly felt pleasure from doing so. Sometimes they even were rewarded in other ways.
Nadezhda Long recently described to me the impact on her children, whom, when they were young, Noelle babysat. When Liza and Sasha, Nadezhda’s children, were in grades 3 and 5, Nadezhda bought them velvet dresses for Christmas. After watching a Christmas play that focused on humanitarian values, Liza and Sasha begged Nadezhda to let them take back the dresses and use the money to take Noelle shopping. Ironically (or was it ironic?), after Christmas, the dresses were still at the store and on sale for half price so that Nadezhda's girls ended up with the dresses after all.
Accepting help was never my forté. I was a product of New England, and New Englanders, in Ralph Waldo Emerson’s words, are “rugged individuals.” Along the way, though, I learned to accept help, not only because I needed it but also because people truly liked to give it. It seemed that Noelle and Doah, both of whom exuded an irrepressible faith in God in spite of being parented by an atheist (me) and an agnostic (Donnie), brought out the best in people. Now, post-conversion, I understand a little better why: we were God’s gift to other people. We presented them with the opportunity to experience the pleasure of helping others: us.