I set the timer to go off each hour on the hour.
This ensures that I never miss a bolus feeding or a dose of Parker’s medication.
Our daily schedule makesÂ nurses at the hospital look at me as though I’m missing more than just a few marbles.
“Why, ” they ask, “don’t you just give all these meds in the morning, and all these meds in the afternoon and all these meds at night?”
“Because I’m trying to space them out and give them at just the right time to work well with some of their counterparts and insure they don’t infer with others, “ I try to explain.
The actual medication schedule was made up by a Pharmacist at PCMC and then examined with a fine tooth comb by Parker’s cardiologist, who is also the issuer of most of Parker’s medications.
It’s the same thing with Parker’s morning and nightly routine of vest treatment, Xeopenx, and Flovent.Â It needs to be done just so.
I make sure Parker has had enough water each day.Â Not to little and not too much and (heaven forbid!) not all at the same time.
I clean my house constantly.Â With steam and otherÂ products that won’t wake up the asthma that lurks in Parker’s lungs.Â Â We purchased the vacuum with the super duper HEPA filterÂ that is supposed to kill viruses and take the punch out of pollen.
I’m trying to keep a kid alive here, I constantly tell myself.Â Â If I try and do everything within my power, perhaps when I call on the powers of Heaven my voice will be heard a little quicker and a little louder, I rationalize.
Being the mother of a medically fragile boy with special needs can at times make you a little bit nuts.
But because there is so very little I actually have control over when it comes to Parker’s health, I feel such a need to do something.
I realize I do some of this stuffÂ for the same reasons a baseball player never changes his socks during a winning streak…..pure and total superstition.Â Â I mean can dirty socks really make you hit the ball further?
It’s an illusion that by doing things in a certain order, or having my house clean enough to eat off the floor, I can somehow help insure good results on the next right heart cath, or attract that long prayed for miracle, or…..or…or….
Well, you get my drift.
Some people never leave home without their child’s lucky blanket.Â They hold tight to the stuffed animal that got their child through the last surgery, in hopes of it getting them through the next storm on the horizon.
What kind of things do you do to help ward off the evil eye and give yourself the feeling of control in your child’s health?