Monday, July 20, 2015

Make-a-Wish Update

Hello,
It's Wesley's Mom. I know it has been awhile since I have last written. I am so, so tired.

Make-A-Wish came to our house. I am so thankful that foundations like this exist. I was thankful before, but now they are giving my child an opportunity to do something we could never do by ourselves. There's also a great sadness that came with the volunteer's visit. As I have mentioned before, a lot of the time, when we are in what is our 'new ' normal routine of life (therapies twice a week, weekly 4 hour drives to the ERT infusions, other doctor appointments, etc.), I forget Wesley's prognosis and it seems surreal. Almost.

That day I was reminded why Make-A-Wish existed, to grant wishes for dying children. As a Mom, that is a hard thing to remember, that this is the life of your sweet child. My baby, my beautiful, bright eyed, sweet natured little boy. It is heart shattering. It's bitter sweet. I know I promised to post Wesley's wishes right after, but the truth is, after it was done, it felt private. I had to take it all in. I had to stop and breathe and take some time to tell the people who were close to us and share my feelings with my closest friends first. I had to cry a lot and stomp my feet a little because this is really happening. Wesley has MPS 2 (Hunter Syndrome) which these days sometimes still comes as a shock and now all the wonderful things that Make-A-Wish offers to him makes it more real. It's exciting. It's sad. It breaks my heart. It makes me happy. I feel crazy sometimes with all these emotions that these circumstances make me feel. 
Thank you for allowing me time to keep these things to myself for awhile until I was ready to share them with all of you. 



Now for the moment you all have been waiting for... 

For Wesley's Wishes he chose three things; 
1.) Disney World 
2.) Thomas the Train ride
3.) bigger fish tank for our house 


They will let us know.  :)
Thank you all so much for your continuous support, love, and especially prayers. 

Have a warriors heart, 
Wesley's Mom 

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