Looking at this picture of her, it feels like a dream. I have been keeping this dress for quite a while, waiting for the miracle to happen.
In March 2019, she developed a trouble spot at the back of her neck. Some days it disappears, the other days it reappears with a vengeance.
Around April, it spread even farther to her upper back. It was so itchy that she would rub it to anything that comes into contact with it, her clothes, the bedsheet, the wall when she leans againts it; making it weeping and wider. We tried to put bandage on it, to keep it from getting rubbed, especially during sleep, but she always managed to take it off.
I took the following picture in June 2019. It's still painful for me having to look at these pictures again.
It got more troublesome that we had to cut the neckline of all her clothes, making it wide enough so the fabric doesn't come in touch with the trouble spot unless she would be so irritated. We turned all her clothes into off-shoulders-like.
Off-shoulders have to be tailored to make it fit around the body and not drooping while worn, and her clothes were not. So all her clothes would drop down, uncovering her skin more than we would like to show. Whenever we go out, people would make comments like "Why isn't she wearing any clothes? Is she hot?" (Literally, orang nanya "Kok telanjang???" padahal jelas-jelas dia pakai baju).
As time went by, she got more used to not being covered around the neck, upper back, and shoulders. Eventhough there were no prominent rashes on her shoulders, she would be so irritated and panicked if her clothes touch them. So we had no choice other than giving her the "off-shoulders". Even tanktops are still uncomfortable and painful for her to wear.
This March, the trouble spot suddenly disappear. She went from this on March 12th, 2020 :
to this on March 26th, 2020 :
At first, she still couldn't tolerate any fabric. I tried to put her on an uncut t-shirt, she panicked and started pulling the neckline wider to uncover her back and shoulders, so I took it off again. The next time I tried, she wore it comfortably for 5 minutes and then started panicking, I took it off again. I forget how many days after that, but I think it was still in the same week, she managed to wear a normal clothes and didn't panic at all.
I have been keeping so many clothes for her in a box. Pretty dresses and t-shirts that I haven't got the heart to cut yet. Everytime I put clothes into that box, I say to myself "There will come a day when she will be able to wear this.", and I pray to God to make it happen someday. And now it's really happening. Praise the Lord!
