Thursday, November 7, 2013

My Magical Bag of Tricks

I love handbags, and own many. They vary in size, color, shape, and style. As the mother of a child with a rare genetic disorder called WAGR/11p Deletion Syndrome, however, I find that I carry some interesting items from time to time.

The first, and most critical things I carry are fidget toys.  Evie is "sensory-seeking", so she wants to feel different textures and experience lots of sensory input.  Most often, the fidget toy is a type of prickly rubber ball.  She can roll it in her hands and feel the light poking sensation of the prickles.
 
Another sensory helpmate I carry is a chewy.  This is a rubbery item for Evie to gnaw away at, rather than gnawing on her little fingers. Evie's chewy is shaped like a "P" and textured with bumps.  Some of the chewies are even flavored.
 
We also have chewelry for her.  These are chewing necklaces and bracelets that are plastic and coiled together much like the key chains people wear on their wrists.  We've had to establish rules for the appropriate uses of chewelry.  Being a victim of the laws of physics, I have been hit too many times with high-speed, projectile saliva. Objects in motion tend to stay in motion; therefore, Thou Shalt not Flick Thy Chewelry out of Thy Mouth is the most important rule.  

Since I've already got our taste buds going, I may as well mention fruit snack. There's nothing better than a little snack to help pass the time.  Fruit snacks are nicely sealed to stay fresh; small and squishable enough to conserve space; and, if they are shaped like characters from some favorite TV cartoons, then one can even make the snack last longer by using the characters to act out a skit. "Don't play with your food" is a mommy-ism from a simpler time.
 
We don't just play with our food.  I like to carry some cards and dice.  Waiting with nothing to do is torture; especially waiting for a blood draw!  I keep Evie busy with card games and dice games. Dice are especially portable, and provide a nice "fidget" activity as well.

Finally, I have to carry hand sanitizer with me.  The primary reason I carry it is because Evie has a poor immune system.  She had chemotherapy to treat her Wilms Tumor between ages 15-18 months. During, and for several years after, the treatment, Evie seemed to catch any and every flu-bug around.   Usually these bugs would turn into pneumonia and a UTI, (urinary tract infection).  As one can imagine, I became quite germaphobic.

The other reason I like hand sanitizer is because no two bathrooms are alike.  In one bathroom the faucet is manually turned on and off while in another it is turned on by a sensor.  Some sinks are closer to the "washer" while others are set back far into the recesses of some decorative back splash.  Often, despite Evie's desire for independence, she is either too short to reach the faucet, OR the counter top is so full of water from the previous sink-patrons that Evie's reach toward the faucet would result in an unwelcome soaking of her sleeves.  I determined that hand sanitizer was definitely the way to go for this mommy.

So, there it is. The most important, gotta have it, "don't-leave-home-without-it" contents of my magical bag of tricks.  While I may not carry a coat rack like Mary Poppins, I do have a handy-dandy little arsenal of boredom-busters. I will sometimes even include a little a spoon and some sugar-substitute for when life's nasty medicine just won't go down.

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