Mito Mom Wears Many Different Hats!!

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Well today is no different from any other day when you have two children with Mitochondrial Disease ages 14 and 18. It is chaotic, tiring, inspirational, as well as challenging to say the least. Better get my hats ready!

When I woke up this morning I put on my Mom hat. Swapped quickly to my nurse hat, got meds distributed and readied for a school meeting about our daughter attending the high school in the fall. Got dressed and left the house, and all of sudden I had to change my hat. I was now wearing the educational advocate hat, and I hadn’t even gotten to wear my mom/nurse hat for very long.

I advocated through that meeting, which was an hour long and quite productive, having used all three hats during that meeting, to return home to change into my Dr. Mom hat, because medical issues arose within the hour I was gone and had to be immediately addressed. Addressed those and was now having to get snacks ready for energy rejuvenation, I wore my chef hat. I reverted back and forth a few times during that hour and changed hats, while I made phone calls for the physical issues with mito as they were effecting the educational issues at hand, and now I was wearing my teacher hat.

It was time to prepare the academic lessons missed due to illness for both kids today, so I put on my teacher/tutor hat. Enlarged the proper assignments, researched and enlarged fonts on the computers, than realized I needed my computer tech hat! Technical access issues emerged and all of sudden I have to put on my new hat! By this time, my head hurts from changing hats and it is only 12:30 p.m. I quickly swap back to my tutorial hat, and learn about the trials and tribulations of writing a persuasive essay in the 8th grade. Help brainstorm a writing graphic organizer, and am informed that there is art work necessary for this assignment.

I now change into my artist hat, and am creating a large template for my daughter to see as her vision is failing and what she could see 10 minutes ago, she can’t now because her acuity is variable due to fatigue. Swap hats, now I am wearing an opthamologists hat, which is humerous because I am having difficulty seeing as well, because I been trying to decipher the tiny font on the instructions from the school for the project.

But aha, another hat, I am now wearing my graphic designer hat, and have found a way to enlarge the font and template so that we can both see it. Let’s see it is now 1:30 p.m. Time to change hats again, I have to put back on the nurse hat because afternoon meds are needed. Calibrate, dispense, count milligrams, medicate and onto my chef hat, sugars are low for the 18 year old, and he is feeling lightheaded, not to worry I have my dr. hat right around the corner.

Swapping, moving, and after dealing with his temperature dysregulation and balance issues, were back under control. Onward, it’s 2:15 p.m. I take off my dr. hat and realize, I need my mom hat back because I have forgotten to feed myself, swap again, chef hat, eat and back to mom hat.

It is now time for my personal favorite hat of all time, my shopping hat! Wooohooo, I am off to get groceries, pick up medications at the pharmacy, find a new light weight jacket for the 14 year old, as she is constantly fighting her body temperature, can’t keep her warm, than she is too hot! I got it, I now switch over to my environmental engineer hat! I am sure I can solve this issue as well, but in the meantime back to the shopping hat! I buy school supplies to lesson hand and eye fatigue, and can’t forget to buy over the counter medications for mito cocktail! Alas, I need my pharmacists hat!

Whoa, need to get back home, change to my drivers hat, then get home and put on my chef hat, meals have to be cooked and prepared. Finish dinner and it’s 5:30 p.m., because if we don’t eat on time, both the kids will be asleep for the night at the dinner table. I am not ready to put on my night cap, or bedtime hat as of yet.

I finally switch to my therapist hat, as the emotional trauma of being a 14 year old girl without a boyfriend has become cataclysmic, and the reality of being out of school for the past 3 weeks due to mito issues is rearing its head. Walking gently I have to remember that while I have this hat on, I am not MOM, but the enemy who “just doesn’t get it”; although I prevail, we laugh, and she is ready to make it through another evening, even without a boyfriend.

Night is here, bedtime is close, kids are settling, ahhhhhhhhhhhhh silence. Wait, wait for it, wait, yup, here it is, time for my nurse/dr hat, 14 year old can’ t get her CPAP machine to work, needs some TLC, and possibly my machinist hat, but thank goodness, my electrician’s hat did the trick when I finally figured out it just needed to be plugged in.

Nurse hat, bedtimes meds, can’t forget those!

A hush over the house, all is good! Phone rings, and I am changing hats again, another mom can’t find her mom hat, and is about to lose it when I tell her not to worry she can borrow mine anytime! She doesn’t want my hat though, she needs me to use my teachers hat to help her childs school understand what Mito is about.

I take off my teachers hat, it is now 10:40p.m. I put on my maid hat, turn down my bed, climb in and make sure that my dr. and nurse hat are right on my bedside table, because who knows what hat I might need during the night. Eye’s close as my hat-less head falls onto 3 great feather pillows!

MORAL: Changing hats is a moment to moment occurrance in a MITO house. Some-days I wear certain hats more than others, but I have invested in a hat rack, which by the way is a must! If I didn’t have a place to hang my hats and rest my thoughts at the end of the day, I would have difficulty choosing the right hat when I needed it. Keep your hats organized, hung, and available at all times, because it definitely is easier to find them when you need them at a moment’s notice!