She's had troubles sipping water after a good cry. Choking as if her throat were too swollen and sore to accept simple liquids.
More and more it seems the G-Tube was at exactly the right time. Could have been sooner actually.
Maybe the underside of her lips wouldn't look like they have grown to her gums in a webbing like way that is famous with the Recessive Dystrophic EB on other parts of the body.
I'm sure it would eventually get to her.
That's the most stressful part of her disease, that every scar adds up.
Every blemish one for the ages.
I used to look at the many scar sites on my body with a proud and some not so proud stories.
Like hearing that cats always land on their feet. At the age of 6 or 7 I took our family cat Tassue to the balcony for the experiment. As the cat was half way off the balcony from being heaved into the air, he realized that this wasn't a warm lovey embrace, shoots out the claws and tears a few deep wounds down my arms, then scampers quickly up and over my shoulder to safety. The only good thing that came out of that over learning not to throw cats off decks was a deep scar that helped me in the early days know which was my left hand over right.
Raquel, will never get that quiet moment with a lover to show off this and that in quirky stories of bravery, shortsightedness or the funny stories laced with stupidity. Her stories will be this is where my dad let me draw at my easel and wasn't standing behind me when my sox let go from the slippery tile floor and I hit the pencil tray with my cheek on the way to the floor. Of course it'll be buried under many other nearly as benign momentary lapses of balance or watch.
|The Safe Drawing Zone|