Friday, November 8, 2013


Owen got a very special package in the mail today.
 "What is it Mommy?"
 Owen is the newest Tiny Superhero! Just in time for National Epilepsy Awareness Month too!
Tiny superheroes was started by Robyn who had made a cape for her nephews birthday present. As she made the cape she kept thinking about a little girl named Brenna who was battling a rare disease. She suddenly realized the Brenna NEEDED a superhero cape. Then she realized that there were a lot of children who could use capes. Tiny Superheros has now distributed over 2000 capes to children dealing with serious illnesses.
 I don't know if anyone who doesn't have a child facing serious health issues can understand exactly what these children go through. We often have people tell us things like "Well, he doesn't look sick". In reality, Owen is physically doing very well right now. We haven't called an ambulance in almost 6 months! He isn't falling all over. He has gained back much of his fine motor coordination. The last hospital stay we had was in July to start the diet. Mentally and emotionally however is a completely different story. Owen is doing so well right now because his eating is extremely limited. We went to the grocery store for the first time since Owen started the diet. That's right, I haven't taken him to a grocery store in over 3 months! There are just so many things he can't have there. There are so many things he misses. He did amazingly well, he sat in the cart and held his butter the whole time. He kept asking me what different items were, like bread, and saying "yum! ". He's only four years old. The Ketogenic diet is helping him so much, but it's HARD! He really is a Superhero and getting this cape made him so happy!
Brenna had to try on the cape too.
 It just feels so wonderful to have a tangible acknowledgement of everything he's going through. The cape is perfect because it symbolizes bravery and bravery is something Owen has had to struggle with every day of his life.

1 comment:

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