For the past few months I’ve started whispering in Livia’s ear. I say the same things over and over again. I do this several times throughout the day. My hope for this is if one day she isn’t communicating, or life is very scary, I can whisper these familiar sayings to her and it will bring her comfort. I want her to always feel safe and secure with me. I want to be her comfort. She is so precious and easy going. I hate that her life isn’t going to be easy. I’m not saying life is easy, but unfortunately, even if a cure or treatment does come about for her, this is going to mean routine doctor visits, infusions, etc. Believe me, I want this over the alternative. But I’m realizing that this isn’t all just going to go away. This realization has made me want to work even harder. To fight for our children’s lives and to tell her story. I’m proud that Livia’s face is all over facebook and that she and her MPS friends are touching other people’s lives. I wish it was for another reason, but it’s not. This is our life and we are going to make the most of it. I wish I had all the resources and knowledge to do everything that I have brainstorming. I’ve been working on one of my resolutions, the not being afraid to ask for help resolution. I’ve had talented people offer their help and time. It’s awesome. It humbles me to know that there are people who really do want to do something to help us out. If only we all couldn’t just “pool” our talents, knowledge, and strength’s to help one another out, don’t you think this world would be a better place to be in? Anyway, I kinda got off on a soap box rant. I just want to thank all our friends and family out there who are voting everyday for the Pepsi grant. It is HUGE that we are in first place. Just a month ago the average person had never heard of Sanfilippo Syndrome, now we are ranked 1st. I think there are over 100,000 teams, people, foundations out there going for the 250K grant. It’s great that we are making such a big impact. Keep it up until Jan. 31st at midnight.
As you tuck your kids into bed tonight whisper something in their ear that will bring them comfort. Even if its been a day of frustration, trouble, or sadness. You are your biggest comfort to your child. Let them know. Let them know that they are your heart. That you love them more than life!!!!
I’m proud to be Livia and Finley’s mommy! I’m proud to be fighting and making a difference! Please feel free to share this picture. Make it your profile pic or just email it to your inbox. Help keep this going strong! 