Acts of desperation: Special Needs Style

I used to be…..oh, what’s the word I’m looking for…..oh, yeah….

VAIN.

Not a hair out of place.  Make-up just so.  Even my jeans were perfectly pressed.

Enter a medically fragile kid with special needs.

These days find me clothed in yoga pants with hopes of sometime during the day I’ll actually have time to exercise. Or at least that’s what I tell myself.

I’ve been known to make emergency runs to WalMart in sweats because if I actually took the time to change into something ‘more presentable’ there wouldn’t be time enough before the nurse has to leave to actually make the run.

People, between trying to keep my house off of Hoarders, educate Parker at home, and at least pretend to make an attempt at meals, I’m lucky if I have time to shower, much less shine. Then there are the times when Parker’s circling the drain that I can’t leave his side long enough to decontaminate.

It’s often a dirty, stinky job, this keeping a medically fragile kid alive.

I’m not the only one who finds myself in this sort of predicament. Recently a friend sent me a picture of her kitchen sink, filled almost ceiling high with the dirty dishes she hadn’t had time to get to for the entire week her kid was recovering from RSV and she did nothing but suction him 24/7 in the hopes that he wouldn’t drown in his own snot.

Acts of desperation.  Parents of kids with special needs ditch their pride all the time when it comes to caring for the fruit of their loins.

Like the time I realized, hours after the event, that an ostomy bag really could explode violently enough to actually paint the back of my shirt.  I’m sure the people in the elevator at PCMC with me were thrilled.

I’m kinda glad I’m not alone here.  Nobody likes to feel as though they are the only inhabitants of the Special Needs Twilight Zone.

To prove my point, I’ve collected Acts of Special Needs Desperation to share with you from other Mama living in the trenches:

~ You spy out every source of liquid refreshment in sight to make certain your kiddo doesn’t get any non-thickened ideas.

~ Residents come into your hospital room to ask what certain words mean so they don’t have to admit to their attending they don’t know what in the heck a plain old mom is talking about.

~ You don’t go into a restaurant with your child without checking to see if it has the one item he’ll eat. And you might even want to take a look at it to make sure it’ll be acceptable to him.

~ You find yourself asking visitors to please not remove the socks covering all the doorknobs b/c (obviously) doorknobs look like faces to your DD and are not to be trusted, or looked at.

~ You realize people think DD is visually impaired b/c her eyes are closed and you are leading her around by the arm.  You decide not to tell them that this is so she can’t see all the leaves on the ground b/c then she’d have to pick them all up and you’d be late.

~ All foods are finger foods — including soup.

~ Your kid eats his dinner while jumping on a trampoline because he’ll eat non-white food that way.

~ Thou shall not tinker with the routine.

~ When people launch into the “My baby is developing better/faster than yours.” competitions you reply in the very next breath that your child glows in the dark. Even better, you don’t even laugh when you say that.
~ You’re a notorious medical supply thief and you know which nurses to enlist in helping to liberate the more obscure things.
~ People think your child has only one set of clothes… they have loads but all exactly the same.

~ You can read the paper and know just when and where to put your hand to catch puke without missing a word.

~ You have  seriously considered wearing t-shirts with the names of malpractice lawyers on them, in order to get better treatment for your child.

~ Other family members must be bleeding, dismembered or comatose in order to receive any sympathy from you.
~ Your immune system is so well developed that it has been known to attack squirrels in the back yard

~ You have a fat three ring binder on each child with every diagnosis and evaluation in it’s own sheet protector and you take it to every appointment.

~ When your child keeps you up all night screaming with reflux, but you don’t mind because you’re happy to be sleep deprived because it means your child is still alive.  You watched two families in the ICU lose their children, and you know they’d give anything to be in your place.

~ When you brush your kids  bodies every couple of hours but you can’t remember the last time you brushed your hair.

Got an Act of Desperation you’d like to own up to?  That’s what the comments section is for!