Today’s format was similar to yesterday: breakfast, seminars updating us on current research and legislation, and plenty of social time.
One of the amazing things that was shared was this: some of the leukodystrophy researchers who work for Hunter’s Hope were here for our welcome dinner on Wednesday; as they saw all of us with our babies and heard some of our stories, it apparently impacted them greatly. As with any career, you can become jaded and it can feel like just a job. Being with all of us increased their urgency to continue searching for a cure, better treatment, etc. because they realize that time doesn’t just cost money, it costs lives. I am so thankful for the brilliant minds who are working so diligently to stop these diseases from taking more lives.
Tori was having a rough time this morning and we think it was a tummy ache (note the outfit changes in the photos 😉). Thankfully, after a good nap, she was much happier.
After lunch the men and women split up for a couple of hours of sharing and processing. It was a powerful and emotional time as we each shared our stories and struggles of everyday life with a terminally ill child.
The extra special thing about today was that we were all able to participate in the Every Step Walk (you all helped us raise over $1,100 for Hunter’s Hope!) this evening.
Before the walk, balloons were released in honor of all of our babies and the ones who have gone before. They played the Carrie Understand one “I’ll See You Again” and it was such a powerful time as we watched the balloons float away until we could no longer see them.
Tomorrow is a free day for the families until dinner, so we will be taking it easy most of the day. Brennan is going to play golf with some of the other men in the morning, and I am having a massage in the afternoon 😄
We have been so blessed and encouraged by being here, and though we never wanted to be part of a community like this (who does?), we are so thankful for each and every person here and for the encouragement they provide to everyone else.
None of us can do this on our own, so having support like this is invaluable, and it is vital.