One of the side effects of Sanfilippo is the feeling of isolation we sometimes have as a family. Our kids aren't capable of doing age appropriate activities. As other families evolve as their children age, we are perpetually in the baby and toddler stage. We often say we feel like we are in the movie "Groundhog Day". It is difficult to find sitters who are capable enough to care for and handle both Waverly & Oliver. We spend a lot of time as a family watching favorite videos, reading favorite books and spending time outside.
The winters are rough. Waverly's circulation is getting worse and it is very difficult keeping her warm. Needless to say, we are counting down the days until spring arrives. (And counting down the days until we head to Florida for Oliver's Make-a-Wish trip!!)
One thing the Pepsi Refresh Project has shown Matt and I is just how supported we truly are. We are amazed daily by friends voting, sharing with the friends, commenting on the blog, and sending us messages. We cannot believe the people who are joining forces with us. Invested in winning this grant - and determined to play an active role in making that happen. I keep seeing friends say "WE are in first place". I love the use of the word "we" - it makes me feel like I am not standing alone.