As a sixth grade English teacher, I spend a considerable amount of time introducing and stressing the importance and power of choosing the perfect, tailored word or words to communicate one’s ideas or feelings. The power of words is astounding – it amazes me, encourages me, cuts me to the quick, inspires me, and comforts me daily.
And so, in that same spirit of challenge, I would like to amend and redress something I said in a post a few months (or what feels like a lifetime) earlier.
When Koby and I first found out that our son Hayes has a neurological condition that affects his eyesight (called Optic Nerve Hypoplasia), I wrote this regarding my anxious feelings prior to the diagnosis:
I was afraid there was something we’d be discovering about Hayes from the moment I held him for the first time.
Let’s talk about inference. From the tone of that statement, you, the reader, would probably infer that I was anticipating ‘discovering’ negative things. Learning negative things. Experiencing negative things.
And you’d be right.
Despite my optimism there existed underlying fear as, together, our family faced the unknown. I don’t think the subconscious negativity was exactly harmful: in fact, I think it sprang from pure ignorance. As we genuinely didn’t know what to expect, I focused on the upsetting discoveries we’d be likely to encounter.
Let me tell you about Hayes and discoveries.
Hayes began therapy through Early Childhood Intervention in May. Since then, he’s had weekly sessions from a wonderful occupational therapist, monthly visits from a speech therapist, bi-weekly check-ups with a vision specialist (through the Clay-Jack Co-op), monthly visits with an ECI case manager, and spent occasional time with a coordinator from Division for Blind Services, who also secured an iPad for him and keeps us abreast of new technology, toys, books, resources, and get-togethers for families like ours.
In May, I sat with the ECI ladies and our vision therapist and we set some motor skills goals for Hayes, who also has what’s called hypotonia, meaning low muscle tone. Hayes’ first goal (set when he was six months old in May) was to raise his head when lying on his stomach and change position or turn his head to face people or objects at least five times daily.
As we sat in that room and put those words to paper, I remember thinking Will this ever really happen? I looked at my son, and I hate to admit to you that I doubted him. Our reality at that time was that our six month old son wasn’t rolling over and still didn’t visually track objects well, or indeed seem interested in things much at all because of his crossed eyes (strabismus). To me, that goal may as well have been to build Hayes a rocket ship using paper clips and bubble gum and fly him to Venus by his first birthday. It seemed equally hard that day. I couldn’t get past our reality.
Hayes had the strabismus corrective surgery in July and it went ‘perfectly’ according to plan, according to the surgeon, who is also our ophthalmologist. Around that time (and perhaps because of the surgery and its effects) Hayes was catapulted into a time of advancement. He began rolling over, he began tracking. It was awesome.
He plateaued for what felt like eons, but was actually a few weeks. Teeth sprang from his gums in the nick of time to reassure me that nothing too alarming was happening with his hormones. His genetics test results came back and found only one very small loss of material on one something of a chromosome, meaning that he’s got no known ‘syndrome’. (Obviously we haven’t been to that appointment yet because that’s as specific as I can get and I’m not even exactly sure what I’ve just said.)
And then, y’all, the best thing happened. Hayes met his goal. He was rolling over, holding his head up steadily, and changing positions to look at things and listen. In early September, we set a new goal.
In May, I looked at my son and thought Are we crazy to be this hopeful? and within three months, we were beginning to plan for new goals.
And so, my amendment is this: while some discoveries have tested our foundation, some have solidified and strengthened it. I regret that I felt that way about the discoveries I’d make with Hayes, but I know so much more now. I am learning and discovering a new kind of hope and perseverance, and my eleven month old son is my teacher.