I miss my son’s voice. When I say that, I don’t mean the baby voice when he started jabbering, or any variation of that. No, I literally mean that I miss his voice. His actual voice. He’s turning three next month, and it’s been almost two years since I’ve heard his actual voice.
When he was six, seven, eight, nine, and ten months old, he did the normal jabbering baby talk. The oohing and the ahhing, the cooing, and just the nonsensical ramblings that a baby will do. He would babble and make adorable sounds and do all the things people swoon over and think are adorable. He would say ‘mama’ and ‘dada’, especially ‘dada’, intentionally to annoy his mom. A jabber jaw. He would even have full-on conversations with us, babbling away.
He had even started to follow the cadence of the Bluey theme song and would go “Bluey!” on cue. One of my favorite videos is still from the morning of his hip surgery, where they had given him medicine he help calm him before being taken back, and he just goes “oooh yeah!” like a drunken frat boy.
But then things changed. He had hip surgery, multiple Mehta casting applications, and ankle surgeries. Each time, he had to be put under anesthesia. Now, on the other side of all that, we have a child who can sit, stand, and take steps, but he is now nonverbal.
He doesn’t say ‘mama’ or ‘dada’ anymore. He doesn’t have those incomprehensible conversations with us. Instead, he is learning to use an eye gaze device and communicate through flashcards. There are no words, no ‘I love you,’ no ‘bye.’ And that really hits hard sometimes.
Most days, it’s just part of life. It’s part of what our life is, just kind of like everything else. We adjust to it, we become accustomed to it, and we just go on. But sometimes, Facebook memories remind us of when we used to hear our little boy’s voice. People may wonder if there’s a diagnosis or explanation, but so far, there is nothing official.
There are theories, and one possibility is apraxia, where the brain knows what it wants to say, but the signals don’t reach the mouth to produce the proper sounds that you and I are accustomed to hearing that we recognize as speech. Our son does make sounds, like grunts, laughter, sounds of excitement, or sounds of complaining. Believe me, he has no problem letting his complaints known when he just wants to complain or disagree with what he’s being told or what he’s being told to do, especially during therapy. He has no problem working those lungs and making sounds when he wants out of bed, or when he reminds us he’s turning three by throwing the appropriate 3-year-old fit.
He’s labeled as non-verbal, but he does make noise. He just can’t form words. We may never know the exact cause or have an official diagnosis. It could be something that was always going to happen. It could be a result of being put to sleep so often at such a young age and then having to work so much in therapy and recovery and doing all the things that he’s done.
When we first started picking up on the delayed speech development and eventual absence, that was the running theory. That his body was just using all its energy to heal and putting in the effort he was during therapy. It also didn’t help that his mother and I were so adept at reading him and knowing his wants or needs that he didn’t need to develop those skills to communicate, because he was with at least 1 of us, 24/7.
That was the running theory for a while, or more accurately put, that was the hope for a while. His speech was delayed, and the delay has turned into absence.
For many, not knowing the cause or having an official diagnosis would be the hardest part. Those unknowns would be the weight that haunted them. But for me, the hardest part is the pain it brings. The unknown isn’t want haunts me; it is the known. Knowing what our son’s voice sounded like. Knowing he was saying words and knowing his personality was radiating through each one.
Eventually, I’m sure we’ll come to a conclusion and an official diagnosis. With school fast approaching, I’m sure that official diagnosis is closer than I’d care for it to be. Because I can live with not knowing for certain for a while longer because the uncertainty doesn’t hurt as much right now.
