My Very Special Grandnephew

My Special Grandnephew Kyle (seen here watering his Granny's plants)

His name is Kyle and he is very intelligent. He loves and knows cars. When he was one year old, he knew how to turn on the DVD player whenever his Granny (my Mom) wanted to watch some movies. He is five and comes home from school showing the stars he got from his classes. He is special because he has very senisitive skin. He turns red and scratches all over if he feels hot, is perspiring, or has eaten eggs or any of its by products. He needs to have his special lotion that stops the itchiness and he takes medications when the itching turns bad. There are times taking a bath (which he sooooo loves taking with the water VERY COLD) turns into an agony as he screams with pain – his sores aching from the touch of water.

Last Christmas, the most precious gift I had was hearing him say "I am taking a bath and it's not hurting me at all!" Even the religious sisters who live near our house rejoiced with us over this :) His parents have simple joys - they rejoice when he is finally able to go around the house in his short pants and sleeve-less shirt.

This past year, his mom and dad started to wean him out of his medicines and specially prepared milk, and started giving him ordinary growing-up milk. He has started to adapt to the milk (turning red around the eyes when he drinks, and then slowly his colour returns to normal).

This afternoon, after his nap, I walked with him outside the house thinking “this child needs to run and play outside.” He ran and jumped and ran a race with some kids in the neighbourhood until he started scratching. Immediately, my sister called him inside the house, and I saw for the first time what happens to him and how the family copes. A bowl of ice, a soft wash cloth, and he gets sponged all over with iced water to stop him from scratching. The ice-cold wet cloth must not be rubbed but patted. He instructs his Yaya “Ate, you have to make the cloth like a ball and then dab it on my skin!” I watched for a while and then I went up to my room and cried.

Merry Christmas, Kyle. Next time, Mama Deng will know better...