The Ugly Question

There's one question that makes me cringe. It makes me want to hide. It pulls on my heart strings more than any other question I've ever been asked. Yesterday, the Make A Wish Foundation volunteers came to our house. (For those new to the blog, Wesley qualifies for a 'Wish' because the prognosis for the severe form of Hunter Syndrome is a shorter life expectancy, not past the first decade for many with this diagnosis.)
So, over the gifts, the paper work, and their list of questions, this one came up. The ugly question. The question that makes me sob in the dark when everyone is asleep.

"What does Wesley want to be when he grows up?" 

I answered, he doesn't understand that he grows up. He doesn't know that's what happens eventually. On the outside, I looked calm and collected, but on the inside I wanted to cry. How could you? How could you ask such a question? The whole reason we get an opportunity like this to begin with is because Wesley, more than likely, won't get the chance to grow up. 

After some thought on why they ask that question to terminally ill children and their parents...
Children dream. They imagine. And I'm sure some of them don't even know what's happening. Wesley doesn't. Wesley doesn't know his life expectancy. And we won't ever tell him. He doesn't know that this disease will slowly shut his organs down to the point they will eventually fail. And we won't tell him. He won't ever know that some day, unless they find a cure or God miraculously heals him, he may lose his ability to walk. We won't ever tell him.  He believes in himself. We believe in him too. We will comfort him and help him get through these days. We are and forever will be, Wesley's greatest fans. 

I just hope one day it doesn't hurt so much. I hope it's no longer the ugly question. I hope one day he can be asked that question but it will be different. I hope one day it's:

"What did you want to be when you were LITTLE?"  

We're so grateful for your support on this journey.
Keep praying Warriors!

~~~

Wesley had his 3rd infusion Monday, the 29th. We are starting to notice a difference in his energy levels! And he also needs to be molded for NEW ankle/feet braces. The width & height of his feet have changed as the ERT (enzyme replacement therapy) is helping rid Wesley of all that nasty gunk (the build up of the specific MucoPolySaccharides, also known as GlycosAminoGlycans-GAG).
We are so happy about this news!!! 

Wesley & his Daddy passing the infusion time (4 hours) with a movie!

Have a Warriors Heart, 

Wesley's Mom 

To learn more about Hunter Syndrome & current research, please check out this short video:
http://projectalive.org/