My son Harry is graduating high school today. In just two months he's off to the college of his choice. He wasn't supposed to make it.
Harry had the kind of early childhood that led to years of sleepless nights for my husband and me. Side by side we'd lie, rigidly awake, together, yet alone. As I'd stare through the blackness toward the ceiling, I'd have tears running down the sides of my face and puddling in my ears. They came from a mixture of fear, grief, anger, and frustration. My husband Hank was kept awake wondering if his son's biggest achievement in life might be to secure employment as a supermarket bagger.
We struggled in shock through the weeks shortly after Harry's birth when he suddenly stopped gaining weight and started losing weight rapidly. I was told to keep breastfeeding.
A friend's triplet son, who underwent numerous heart operations as an infant, had more strength as a one-year old than Harry had. I desperately clung to denial, refusing to explore what this might mean.
When Harry was a toddler, as soon as one infection cleared up another immediately attacked his body. I was repeatedly told that prophylactic antibiotics were perfectly safe. I followed this advice even though it was counter to everything I knew about antibiotics.
Finally, Harry became a little boy, whose body was so ravaged that there were times he'd just sit on the floor and drool, a blank look on his face. A speech therapist told me he wasn't hearing well enough to learn to speak. An ear, nose, and throat doctor asked me where the hell I'd been and why hadn't I brought Harry to him sooner. Where was I? I was listening to other people - "experts" - even when my every cell was screaming at me that my son needed different approaches.
I had listened to my gut when Harry was an infant. After trying everything I could to nurse him successfully, including having a lactation expert come to my house, handle my breasts, and watch me nurse, I disregarded everyone's advice (except Hank's and my own) and tried bottle feeding Harry. Harry's pediatrician, who was opposed to this, told us that I'd have to be out of the room or he wouldn't take the bottle - that if he heard me or smelled me, he'd only want to nurse. I remember the first night Harry drank from a bottle - Hank was sitting in a chair in our bedroom holding Harry in his arms; I gave the bottle to Hank and before I'd taken two steps Harry was hungrily sucking on the rubber nipple. He drained the bottle in moments. Out of the room? I was still by his head. He started drinking formula like the starving baby he was. And, as Hank likes to say, Harry plumped up like a ball-park frank.
I know that Harry was probably allergic to something to the formula. We found out later that he was allergic to dairy. I know that by no stretch of the imagination is infant formula as healthy as breast milk. But my child was starving on breast milk (or the lack thereof). Did the formula cause other problems for my baby? Quite likely, yes. But it kept him alive.
Fast forward two years: I was beside myself that my toddler couldn't even say "no." I wanted to experience the terrible twos, every other parent I knew was. Every other mother I knew was spending their mornings at the park or playgroup happily playing the game of mommy one-upmanship and enjoying adding to the banter what their child was doing that was new and wonderful. Harry was sweet. But Harry wasn't talking and his motor skills were delayed. Any stories I might have to tell were old news to the other moms, their children had reached these milestones months before. I had no bragging rights. I had only worries.
Harry's pediatrician told me he was fine but I knew better and I finally heard the small voice in my head that said, "He's yours to protect. Do what you believe is right." So I called a speech therapist. It took her five minutes to tell me the tympanograms were flat, meaning Harry wasn't hearing enough to learn language. It took the pediatrician, upon getting this news mere seconds to tell me to take Harry to an ENT pronto. Pronto? Pronto? For months, I'd asked her, "Is it time for me to take him to a specialist?" and she'd assured me it wasn't. I'd listened, but I also picked out the ENT I wanted Harry to see when it was time. Now the pediatrician said there wasn't time to wait for him - his practice was too busy. Fortunately, I again listened to my gut, and called this man's office, and he had an opening. Harry got ear tubes to drain the fluid in his ears, and an adenoidectomy.
By this time I was on a roll. My faith in outside advice was shattered. I started to trust myself more and to stand my ground. A week after my one-year old daughter was home following hospitalization for severe dehydration, I felt she and Harry were both ill. I brought them to the pediatrician. Admittedly, my reasoning seemed sketchy: their moods were off. The doctor gave them cursory exams and told me they were fine, I just needed a day off, that I was upset from the hospitalization. "No," I insisted, quite uncharacteristically. "Give them strep tests." "No," the doctor said, "They're fine." I wouldn't leave the office, she finally relented and agreed to give one child the test. Which was positive. She still wanted to send us on our way. "Test the other," I demanded. That test was positive, too.
I can go on and on and on. But this was the start of my listening to that small voice deep inside myself. After it was suggested that we take Harry to a child psychologist to help pin down what his learning problems were, that voice kept me taking him to psychologist after psychologist until we found one who didn't say, "He'll never make it past third grade," or "He'll have significant problems throughout his life," but instead said, "He's 95% the same as every other child and start focusing on that 95% rather than the 5% of him that's different." It lead me to write a long, teary, and heartfelt letter to a cranio-sacral osteopath who'd been recommended by a friend. Bonnie's practice was full, but after reading my letter she called and told me she'd make room for Harry in her practice. We drove the hour and a half trip to Woodstock three times a week to see her. I believe her care was instrumental in healing Harry.
We hunted down allergy treatments and any therapies we thought would help. Harry's occupational therapist told us when he was five to not even bother trying to teach him penmanship, that he'd never learn. Instead, we started Harry on vision therapy. The director of special education in our school district was appalled: she said that not only were we wasting our money, but we were wasting Harry's precious time. Shortly after starting vision therapy, Harry learned to write. He delights in remembering how when he started middle school, after being homeschooled for many years, his teachers commented on how nice his handwriting was.
I still struggle to hear the voice. I still question if I should trust my instincts. I still read whatever I can when a decision, medical or otherwise, has to be made. But I know my best decisions have been made from my gut. I know that some of those unpopular and unusual decisions are the ones that allowed Harry to get healthy, and get the help he needed to be a boy who thrived and who learned and who will walk across the stage tonight, earning a high school diploma with honors. I know he'll live a happy and productive life, achieving what so many were so convinced would be impossible for him to do.
I'm awed by Harry's drive, the hard work he's put in over the years, and the wonderful man he's on the verge of being. I've learned so much more from raising him than he could have possibly have learned from my mothering him.
Do I write this to congratulate myself on a job well done? Or to highlight how I know so much more than others? Not at all. I pass this story on because although I don't feel I know much of anything, one of the few things I do strongly believe is that we all have a voice deep within us that can point us in the right direction unlike anything else can. This voice can be so soft that at times it may be almost impossible to hear. But with trust and practice, and as we honor it and listen to it more, that voice gets louder and more distinct. We all have our own lives to live and ultimately, when the stakes are on the line, the best answers lie within.
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