|Kenan Tasting~Summer 2012|
-Hearing stories read to him
–Coloring with his big sister Tamsen
–Going to the playground
–Listening to music
–Meeting new people
-Having dinner with his family while tasting new foods
-Getting hugs and Kisses!
Kenan is growing. He is even getting some new big-boy things!
Kenan is special. Not because he has Krabbe Disease, but because he’s Kenan. He’s a little boy with a personality, unique mannerisms and faint gestures. Though they might be so subtle, that if you aren’t paying attention, you could miss them, he is still an individual. There is no other child exactly like him, and there never will be.
There are all kinds of special kids in the world…like mine, and yours, for example…
I see Kenan’s little hands, his camo shorts and his toys, and I think of my son.
I see Kenan’s soft blond hair and think of how I love putting my hands through my own son’s hair.
I read my son a bedtime story and think of how much Kenan enjoys stories read to him too.
I love to hear Kenan’s mommy, Natasha, talk of those precious moments, when Kenan is happy and experiencing something new. Like when he changes a facial expression when he doesn’t like the taste of something, or when he is happy to hear her voice.
Two little boys, both very special. Two mommys who love their babies and enjoy the tender moments…
Just like you and yours.
No matter what Kenan’s future holds he will always be important, because he is the child of his parents, he is an awesome little brother to a big sister, a son, a light, a gift and a special part of his family’s world.
There are a lot of other children, who are more like Kenan. Some who are at the beginning of their journey with their disease, some who are progressing in it, and others who have succumbed to it.
One of those children was Buffalo Bills’ QB Jim Kelly’s son. His name was Hunter. Hunter lived for seven yearswith his mommy, daddy and two big sisters, and for most of his life he battled Krabbe Disease. But, he was always loved, always a little brother, always special and will never be forgotten, because he will forever be a part of his family.
So, when you view photos of Kenan or see other children battling diseases, don’t feel pity for them or their family. Because many of these parents do not carry pity on themselves… True- they are functioning in a very different kind of routine, but they are learning how to live and love differently as well, and they are celebrating the life of their child today because they have more of an idea of how much time they have left with them.