Ben was born on September 20, 1989. Not long after his birth, we learned of his blindness and deafness. By age three, we knew he would never walk either.
From the day Ben was two days old, our family traveled a road we had never envisioned. Hundreds and hundreds of miles to the best doctors and the best hospitals. Hundreds of needles and X-rays, CT scans and MRIs. After that came the contact lenses, braces, hearing aids, wheelchairs, walkers and crawlers – along with all the therapists to show us how to use all of these things. The operations never stop.
Ben's life today consists of his regular teacher, a teacher of the visually impaired, a teacher of the hearing impaired, an inclusion specialist, an occupational therapist, a physical therapist, a speech and language pathologist, a pediatrician, a neurologist, orthopedic doctors, a pediatric ophthalmologist, an ear-nose-throat doctor, an audiologist, a dentist, an oral surgeon and an orthodontist – and he is only eight years old.
Yet every morning my little man wakes up with the biggest smile on his face as if to say, "I am here for another day everybody, and I am so glad."
Our daughter was born three years before Ben. I remember her dad and I staring at her for lengths of time when she was a toddler waiting for the next sound or word to spill out. Every time one did, it was a marked moment in history – a topic of proud conversation with whomever had the patience to listen. We truly had a brilliant and remarkable child. We still do.
After Ben was born, our love for him changed our views on what was truly important about our children. It no longer was important how many words were spoken at what age, or what phenomenal development took place sooner than any of the baby books predicted. Our children became individuals, each having wonderful qualities, not to be compared. Their lives were not to be measured by lack of ability or exceptional ability, but by the strength to persevere.
By the time Ben was four, he was quite expertly maneuvering his wheelchair, but he had never spoken a word – only open vowel sounds. So our family started putting a tape recorder at the table during dinner to record the sounds Ben was making because he clearly wanted to be a part of the dinner conversations. We thought maybe if he heard his recorded voice and ours, it would stimulate something in him.
One day in September 1993, the tape was rolling while I was feeding Ben and making some sounds, trying to stimulate an interest in him. Suddenly, time froze. I'll never forget the look in Ben's eyes, the concentration on his face, the formation of his mouth, how he was looking up at me from his wheelchair when he spoke his first three words: "I love you." I turned to my husband, and he tearfully looked at me and said, "Terry, I heard him!"
Ben said those words for me, and I have it on tape to play back whenever I need to. I'm grateful, too, because he has not said another word since.
But, you know, I don't play the tape that often; I don't need to. I will always recognize the look in his eyes – even though they are blind – as he reaches for my face to give me a kiss. That is all I need.