Superstitous Much?

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 makes  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.  It needs to be done just so.

I make sure Parker has had enough water each day.  Not to little and not too much and (heaven forbid!) not all at the same time.

I clean my house constantly.  With steam and other  products that won’t wake up the asthma that lurks in Parker’s lungs.   We purchased the vacuum with the super duper HEPA filter  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.   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 stuff  for the same reasons a baseball player never changes his socks during a winning streak…..pure and total superstition.   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.  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?

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. My main thing is to never say he is done with surgeries. I feel that if I say he is done then something crazy will pop up and change. Besides he really isn’t since he has a pacemaker which requires the occasional surgery and I know that his current setup with his heart is only intended to get him to adulthood where the chance at getting a heart for a transplant is much greater. Sometimes though I close my eyes and pretend he is all done.

    • I hear ya!

      We always say things like “He’s holding his own” when people ask us how Parker is doing.

      We’re pretty sure that saying something like “He’s doing great!” would totally insure a hospital stay, kwim?

  2. I was just thinking of buying an air purifier. I was going to talk to my ped and ask her if she thinks they really work and which brand would be best. But I forget to ask her everytime I go in, there’s always so much more to talk about!!
    I think the waiver is statewide. They have the regular Katie Becket waiver. I have a friend in Huntington beach and sweet Zoeys mom in Camarillo, both Southern, but thats where we want to be anyway. They get medi-cal through the Katie Becket waiver. And even Zoey, who’s not as complicated gets nursing hours but they don’t use them. They both even get diapers paid for. The other main reason I like it there is they have multiple childrens hospitals in the same vicinity. So I can choose whats right for Jax, and not have to settle with this hospital that everyone thinks is so great just because its all we have in the surrounding states! Ok, I’m ranting now, I’ll shut up!

  3. Tammy,
    HOLY COW…we’re like twins.

    My sister in law bought me this wand that you can run over the furniture and bed and all to kill germs. It’s amazing.

    I’m also the queen of Lysol. And clorox. And clorox wipes. And hand sanitizer.

    people think I’m nuts…and sometimes I think I am too…but I have a baby to save here! ;)

    • A wand? That kills germs?

      Where did she get it?

      heh.

      Seriously.

      We have a HUGE bottle of handsanitizer right by our front door. If you wanna cross that thresh hold, you better slather it on.

  4. you are such a good mommy! :) it might not feel like it is always helping…but it sure isn’t going to hurt him! :) i love this post!

  5. Khourt says:

    We never comment on how good Alo is doing or the last time he pulled his trach out because as the words come out of our mouths he goes and does something we dont want happening.

    But my reason for commenting was to tell you that you arent crazy. I clean my house a lot. I do things a certain way. It is all to save a life. And when it comes to meds and stuff you cant be too careful. Giving a wrong combo could have very negative reactions..

    people probably think quite often that I am “extreme” in being careful and clean for Alo but there is not such thing when it comes to keeping him healthy… So if you ever see another trach mama out and about with a can of lysol spraying things down its for a good reason!!!

  6. christine says:

    We never unpack the suitcase. It seems silly, but my daughter has been admitted over 50 times in 4 years. Everytime I unpack we repack it as an emergency, so now I never unpack. I also never take the blow up air matress out of the car. They are both always ready to go…..and waiting for us to not need them.

    As far as staying in control. We have a check off list. Every day I pull out a new list and check each box as we go. We have a sick day list and a well day list.

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