That is if we would let her. Our kiddos have been fund raising machines this year, coming up with all sorts of ways to raise money: pizza night, lemonade stands, fruit and vegetable stands, carnivals, bracelet sales, comedy shows… and in their own way raising awareness for mitochondrial disease all in an effort to “save Lucy’s life”. For our kids, this is something that they CAN do to make a difference, what we as parents need to do is to gently inform them that raising money for a cure does not mean that there will necessarily be a cure in Lucy’s lifetime, but our hope is that their will be. This is so hard!
We made it to the beach! We still can’t believe it, packing and planning for this beach get away was almost too much for this mama who prides herself on doing the impossible. Lucy’s needs are enormous! Planning, packing, coordinating shipping of her medical supplies and medical therapies with our infusion company was nearly impossible, refilling prescriptions, staying on top of her med schedule, changing TPN on the side of the road (I have changed TPN in the most unusual places from the Magic Kingdom to a remote parking lot on the side of the road), and packing just the basics for our family of six, was A LOT!
It took me almost all of the three days I was home from the hospital with Lucy to make this happen. Drew and I nearly got divorced (ok not really, but fatigue and stress are not good for anyone much less anyone's marriage) in the process of packing to get away…but we made it… still married I might add.
Even though we had to pack what seemed like our entire house and a hospital to leave town, we need this week away…I need this week away!