Emergency items are required!

7 Feb

“Having a child is liking getting a tattoo…on your face. You better be committed.” ~ Eat Pray Love screenplay

When Oli was born I got a crash course in packing for a child with disabilities. And it wasn’t only the trips to LA that provided me with my learning experience. We still lived an hour away from Las Vegas at that time, which is where all of her regular doctors and specialists were located.

I have learned over the years that the amount of stuff Oli has to have to go anywhere has not decreased in proportion to her age as it usually does with children. If anything I think it has actually increased.

When she was a little baby I had to make sure to remember to pack diapers, bottles, the mommy torture device, er… I mean breast pump, and a couple changes of clothes for her AND me. She had really bad reflux and was prone to soaking both her and I with sour partially digested milk. On that note, I also had to remember to bring lots of wet wipes and never forget the bulb syringe. While driving I had to keep a close eye on her in the review mirror in case she had a particularly bad bout of reflux. The milk, and later her baby food, would come up and out her nose in which case I had to immediately pull over and perform the very precarious operation of baby nose sucking.

As an older baby she required diapers, wipes, food, clothes, toys and a good song on the radio.

As a toddler these same items were required and we added in a few extra things. The toys we had to bring got more interesting and had to be MacGyvered into our car and hung in a way that she could always find them and know where they were. Young blind children have no concept of item permanency. When a blind baby drops something it just magically disappears into space. Once it’s out of touch with their little hands, in their minds, it’s gone. Poof!

The binky. It was a major disaster if I forgot to bring the binky. I still find myself in a moment of panic when I realize that we are out and I did not bring the one item Oli needs to soothe herself. No binky could potentially ruin a car trip, a nice dinner out, a shopping trip, or any other function that requires my girl to sit nicely for longer than a few minutes.

Going out or on a road trip now forces me to do a medication check list. Has she had her seizure medication? Check. Her drooling medication? Check. Emergency seizure medication in the bag? Check. Prilosec been given for her reflux? Check. Are we staying over night? Then we need more seizure medication, more drooling medication, more Prilosec, and THE MOST IMPORTANT MEDICATION…..

the sleeping medicine. I absolutely CANNOT forget the sleeping medicine if we ever stay over night somewhere. This would be very very bad. Trust me.

She also needs her little potty seat. Even though she’s not fully potty trained I’ve been taking her to the bathroom since she was two. And my girl absolutely insists that I take her poop on the potty.

She needs little toys that I can stick in her bag. Things to entertain her in restaurants, waiting rooms, or in the grocery cart. Like dolls with yarn hair or small blankets that she can flap around. She loves this.

Snacks! My girl absolutely loses her mind when she is hungry! I mean sometimes I think she has been possessed by a demon. Her head starts spinning, she starts snarling and clawing. I’m thinking what is wrong with this child. People in close proximity to her are backing up and grabbing the cross hanging around their neck. And then I realize she hasn’t had a snack in two hours. I only have a two hour window between meals and snacks and then Oli apparently thinks she is starving to death and is convinced that I will never feed her again. Yes, snacks are very important.

Drinks. She has only a slightly more docile reaction to feeling thirsty.

Boogie wipes are also a necessity. She always has a runny nose and they are great for cleaning the bit of maka pia pia (eye sand) from the corner of her eye.

The stroller in case she comes down with a case of floppy spaghetti legs and refuses to walk.

Q-tips. Oh my gosh, I almost forgot to write about Q-tips. Not for her ears either. These are for her eyes. Sounds strange I know but, try fixing a rolled prosthetic eye with your big clumsy fingers. Impossible. Q-tips work perfectly and I am proud to say that I offer training opportunities frequently for Oli’s new teachers and therapists. I probably have personally funded vacations for the CEO’s of Uline with my frequent Q-tip purchases. Well, okay, maybe I haven’t bought that many boxes. But I have bought a lot!

I’m sure there are many things I am forgetting but it seems like I’ve covered the emergency items needed for a trip “to the outside world” with Oli.

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