We had been sitting there waiting for the doctor to come in. Dear Son, head down, hanging to the left as it always does now, as if his left ear were somehow sewn to his chest; he is quiet, ready to lie down, as he always is, after just a few minutes in the chair. My body was aching, my back throbbing and every square inch of my body hurting, like I had been in a terrible car crash, only there was no crash. Instead, it was as if all of my insides had been torn out from lifting Dear Son, just another casualty of his disease, kind of like a two for one deal.
The progress report had come home from school the other day. They described how Dear Son would fuss after just four to five minutes in his chair, when they wanted him to attend to something. I knew it had nothing to do with attending to the object or lesson; he was fussing because he desperately needed to lie down, unable to sit up any longer. It was just another sign, that things were never going to get better. I looked over the IEP (Individual Education Plan) and saw that none of the goals we had created last year, would ever be attained. I had no idea of what we should do. I knew really, that there could be no goals, because we were on the downside of the hill, so to speak, and just coasting to the finish line, the kind you never want to cross.
It was just yesterday morning, when he boarded the school bus, head down while the aide gently secured him in. Once boarded, the school bus drives around the bend, turns around, then passes me once again as it heads towards school. I usually wait, because I like to get another glimpse of Dear Son and wave to him as he passes by. It is doubtful he sees me though, because his head lies down on his chest, like a broken dolly, that a child has loved too much. The kind of dolly that is ready for the trash, but that no little girl, will ever part with.
The progress report, along with his ailing body, were just two of the examples I would talk to the doctor about. His seizures, were fairly well controlled with the medications, however his night breathing was another story. Night after night, I would lie on my bed, listening to the watery breathing, as the saliva settles in his throat and he tries to breathe through it. The breathing is loud and cuts through the night, easily heard, by ears of any age. I wait until he can breathe easily again; sometimes, I wait a long time. He is unable to control his own saliva anymore and it often backs up in his throat. I spray the Atrovent into his mouth, to decrease the secretions, but I am never convinced, it does much good. The breathing rages on, and I listen night after night, with the same uneasiness like a mother hearing her newborn crying in another room in the hospital, unable to save him from the spinal tap he is receiving. You never forget that cry, or the pit in your stomach, when you hear your baby cry. I remember that cry too, it’s all there, still fresh, as if sitting on the edge of my brain, waiting for a recall. Some nights, he and I get lucky, but other nights, it’s terrible and neither one of us sleeps very well.
The nurse comes in and sees Dear Son. She speaks softly and gently strokes his hair with her hand. She asks how he’s doing and I look away, avoiding any eye contact, so as not to cry, as I tell her he’s not doing so well. She knows this of course, but she’s being polite. I tell her about his birthday on Sunday, hoping to get a smile out of Dear Son. He loves a party and loves his birthday. He’ll be fifteen then, all but ten weeks of those, spent at Big Academic Medical Center, and with Ped Neuro Doc, who’s seen him from the beginning. It’s hard to believe, it’s been that long.
The visit begins and soon thereafter, they are checking the readings on his Vagus Nerve Stimulator. When it was implanted, Dear Son was so thin, that the device stuck out under his armpit, easy enough for a child to find. Today, the only telltale sign, is the scar that remains from the surgery. The nurse tries to hold the device, Ped Neuro Doc holds Dear Son’s arm up and away and I hold his head to the opposite side, to assist in the reading. I had offered to lift him onto the table however the doc thought we could manage by leaving him in the chair. The nurse drops the device and tries again repeatedly only she can’t get a reading and then can’t find her pen. I look at the doc and tell him it’s like a bad neurology joke. With that, Dear Son erupts in laughter immediately, his belly laughs only adding to chaos of trying to get a reading. Next the doctor starts laughing and soon we all are laughing, Dear Son leading the way. That’s the essence of Dear Son, always loving a good laugh and with a laugh that’s so contagious, you can’t help yourself. It’s the kind of story, you would tell at a funeral, at least that’s what flashed through my head.
The visit ends with a discussion of the surgeries. Tonsils and adenoids removed, to open the throat for breathing and a Nissen, to help with the reflux. I ask if it can all be performed before the end of the year, since we’ve met our stop loss. Our stop loss, is met every year now, as a formality. That’s when you know, the disease has you.
We leave the visit, my hands full with the required prescriptions and I get in the car for the long drive home. I wonder now, with all of the suffering, how much is too much. When do we stop? When does it end? It’s like trying to make your ride last longer at the amusement park. Somehow, it’s never as good when you do that. But when do you stop, that’s the question. When is enough finally enough? I look back at Dear Son, head on the pillow that’s become mandatory in the back seat, and see his gorgeous face. He’s quiet and sad, as he is most of the time now. I start talking about his birthday and the small party we will have on Sunday. I tell him that we will all be singing “Happy Birthday” to him and he begins to perk up. He just loves a party. I sing the song to him and when I get to the last line, I add on the “and many more” as if saying it will somehow increase his lifespan. After all, it’s only a matter of time, before the last candle will go out.
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