Updated: Mar 15, 2020
It’s funny when you have children, and especially children with special needs, how your standards slowly but surely evolve.
It’s funny when you have children, and especially children with special needs, how your standards slowly but surely evolve. The things you NEVER thought you would do, tolerate, try, or risk become everyday occurrences and your limits expand by the day. I find myself accepting things I would never have considered before given extreme circumstances and growing stronger, bolder, and more resigned every day.
When my son, Wes was born premature , for example, he NEVER slept in our bed. When he did wake up, I would lie with him on the couch or walk him in circles around the house. The older he grew, however, the worse his sleeping has gotten and our sleeping habits have gradually changed. I started sleeping in his bed whenever he would wake up, to the point that I was in his bed almost the entire night. After months of this exhausting routine I realized I might as well let Wes sleep in our bed rather than me sleeping in his every night… and we’ve never gone back. We’ve tried to reacquaint Wes with his own bed several times, but stubborn is his middle name and it always starts a bigger fight and meltdown that’s not worth the battle.
This week Wes developed a very quick virus right in the middle of a 24-hour EEG. He went to sleep fine, woke up mid-night coughing and stuffy and miserable. The virus quickly developed, despite our medical interventions (Tylenol, Motrin, Benadryl, Albuterol, etc) and we ended up at the ER the very next evening because Wes couldn’t breathe or stop wheezing. After some hour-long breathing treatments in the ER to open his lungs, Wes still wasn’t able to hold his oxygen at appropriate levels. And so, we were admitted to the Pediatric Ward.
Before we left the ER, the doctor asked us if we would rather go home with the oxygen tanks and monitors instead of going upstairs. It sounded like a nice idea, but we declined not knowing much about oxygen monitoring or how bad Wes’ virus really was or could get. At the time, I had NO interest in tanks and monitors at home, I would rather duke it out at the hospital for a night and go home happy and healthy and skip the messy case management aspect.
One night turned into three nights, however, and Wes still couldn’t hold his oxygen at a high enough level when he slept. During the day he was a Rockstar! Laughing, playing, talking, moving, eating, and the like. His monitor never once went off and he looked like his regular self. At night, however, as soon as he closed his eyes, the monitors never relented. Either his oxygen level was too low, or his heart rate was. They had him on up to three liters of oxygen each night. Then come morning, Wes would rip his cannula off and resume his regular healthy disposition.
Rather than sit around the hospital for yet ANOTHER day, killing time and trying to keep an otherwise mending five-year-old in bed all day, the doctor recommended sending us home on oxygen for the nights. ABSOLUTELY was our response this time. No question, we were ready to go home, monitors and all.
Again, it’s amazing what your limits become once pushed! I’m already dealing with enough pharmacy and insurance and doctor and school phone calls and hassles every day without adding another entity to the mix, but if it means going home instead of holing up in a hospital room for another night, or several as it turns out, then I’ll take it!
Another day, another education on the world of special needs!
Written by Kristyn Lindsey, author of Quest4successblog, parent to a child with special needs, sister and friend.