I was doing well at the beginning of this week. I felt so thankful and overwhelmed with all the feelings of gratitude I have for everything people do for us. Donations are coming in, slowly………but coming in. T-shirts are selling well, coffee is getting there and our donation bucket is doing well at the football games. A player from the team put up a donation bucket at a gas station, a success. For all of this I am so thankful. I’m thankful for all the fund raising ideas that are coming in. I’m thankful to our family for making trips here to help us out. I’m thankful for people who aren’t afraid to talk to me about our situation. It’s not a fun feeling to feel alone in this. On the other hand, 4 children with Sanfilippo have died in the past 2 weeks. I’m so saddened by this. It scares me. One of the families is from Wisconsin. I received an email from the MPS society that the family wants to donate a new wheelchair, feeding tube supplies and various other “materials” that are new or barely used to another family in the Illinois or Wisconsin area. I had a couple reactions to this email. My first reaction was of course sadness for the family. I was a little shocked because we are in no need of this equipment and it made me think we may need this stuff in the future. I also had a strong desire to reach out to this family to in some way maybe be a support for them. I wanted to tell them how sorry I was to hear about their child. I wanted to know about their child. Just know them. I HATE THIS. I hate having to work around this pit in my stomach everyday. Livia is my heart, she has my heart. She and Finley are my world and all I want for both of them is to be healthy and happy. I just want my children to LIV. I will do anything to fight for her life. My desire is stronger than ever to do something, anything to raise money for research. With Jake laid up for the summer (bucklehorn tear of the meniscus, avulsion fracture of the patellar tendon, bone bruise and complete tear of the ACL) he will be getting lots of computer assignments from me to help our cause. I’m starting to realize that I’m going to have to delegate some tasks to others in order to get everything done. I know I can’t do it all by myself. (Volunteers anyone????) With all that said, we are going to make the most of our days and the most of this summer. I’ve said it before………each day is truly a blessing for anyone.
Psalm 136:1
Give thanks to the Lord, for he is good, for his steadfast love endures forever.