Today marks a year since SCAR9 complicated our world
Christina Paul
Where do I even begin. Trying to find the words seems almost impossible. I'm usually never speechless!! How far have we come in a year? I can start there I guess. Well, let me think a moment... Hannah has definitely had her ups and downs, She has been in the hospital quite a few times. Family has drawn closer, and then some family has chosen to walk away. I have met some incredible people along my journey of reaching out to the virtual world of support. I have also learned a lot along the way, some things I have learned has actually angered me more now than the first day of diagnosis. Hannah has definitely progressed in her disease since day 1. Right now I would say is the hardest to watch. It's heart wrenching. Knowing your child is suffering and you're hands are absolutely tied. Knowing there's no cure sucks. I'm emotionally, and physically exhausted. I won't give up the fight though. I will continue to do everything in our power to make Hannah's world as bright, and happy, and fun as can be! I wish I could be inside her head to know what she was thinking. I wish I could take the misery away. If I could trade with her I would in a heart beat! I don't understand why any child has to suffer, ever! I don't feel like I’ve have gotten any further with getting the word out, and getting our story heard. But I'm not giving up! I need the media or someone to hear Hannah's voice. To know how much we are struggling, and how rare this is, and how alone we are. The fact that she is Case 1 in the world! Someone, somewhere has to care about that... It has to mean something. my mind is so fuzzy and discombobulated right now, I think this is where I will end this...