Parenting a special needs child is challenging sometimes. Fortunately most days are rewarding and lovely. Yesterday was not one of those days.
Yesterday was the first time in my history as a parent that I both raised my voice at my child and also slapped her hand. Not hard, but a slap nonetheless. I felt sick afterwards and still do.
I’ve written about Avery’s recent diagnosis of Epilepsy and how frightening her seizures have been for our family. Because they often require medical intervention to stop them, they can be dangerous. This is why my husband and I take turns sleeping beside her in her room in case of an episode in the night. Needless to say, we come by the dark circles under our eyes honestly.
Shortly after her last trip to the ER due to a particularly bad seizure, Avery came down with bacterial pneumonia. Call me crazy, but I’m convinced she picked it up at the hospital. She woke up one morning with a raspy voice and runny nose. No fever. I kept her home from preschool just in case. By 4 pm she was listless, had a temp of 104.6 and a respiration rate of 70 breaths per minute (normal is about 25). I called Telehealth for advice. Their advice was to get off the phone and call an ambulance. So once again, sirens screamed through the streets of our neighbourhood.
We spent three days in the hospital in isolation. Ever spent three days…in a tiny room….with nothing to do… with a toddler who is on Ventilin (which main side effect is a racing heart beat and extreme hyper activity)?
A few days after we got home, Avery stopped eating, drinking and sleeping. She was miserable. We were all miserable. We thought it was because of all of the drugs she was on.
When I took her for a post hospital follow up appointment, the doctor discovered her throat was covered in large, white, blisters caused by a viral infection. Again, a parting gift from the hospital I’m sure. I had no idea. It’s impossible to get a good look in that child’s mouth on a good day.
It’s no wonder she refused to eat or drink or take her medication without a fight.
She was in pain but was unable to express it. She tried to tell us she was hurting by refusing food, by cramming her hand down her throat repeatedly until she gagged (this is when I lost my mind and slapped her hand) and by spitting out her medication (this is when I panicked and shouted, “Avery! Do NOT do that. You need to take your medicine!!).
A parent is supposed to heal, not be a heel, but frustration, fatigue and fear do not a good parent make. 🙁
Avery’s throat is nearly better and her appetite is improving.
But, of course, now her brother has Norwalk….