It’s been a hard week, and when I think of the 20+ appointments I have for Claire alone this month, 48 hours in Orlando to attend a conference to meet people I know will make a difference, day surgery for me because my autoimmune disease is flaring from the stress, while trying to heal little Claire from her surgery and pneumonia. On top of that our furnace has been broken a week even after four service calls…
I will focus on the fact that we have a part-time nurse starting tomorrow, Claire’s school is throwing a dance-a-thon to raise money and awareness, we have so many community events happening to help us get to our goal and these kind hearted people are what helps keeping us going. Plus, we have surpassed out crane goal, but won’t stop until everyone knows what Batten Disease is.
