I often wonder what life would be like if we didn’t have Sanfilippo in our life. It’s been my goal to find the positive in this “new life” we’ve been given. Some days it’s really hard. It’s especially hard when the dark out weighs the light. However, I’ve found that the light prevails and there […]
Here are some updated pics of the girls. They are really starting to interact and play together. Finley is trying so hard to keep up with her big sister. She is crawling, or so it resembles a crawl, and walking around furniture. Time really goes too fast, but each day my girls are doing something […]
I came across this song by Brett Dennen a few months ago. I was in my bathroom getting ready for something and I had one of the music stations on that comes with our satellite. I was listening to music not really paying much attention to what was playing. This song “By and By” came […]
Since Christmas I feel like I’ve been living each day in a bit of denial. It’s easy to do since we have such a great routine. I feel like I’ve put MPS away to try to bring back myself. I was tired of being sad everyday. I was tired of looking at Liv and feeling […]
Having a two, almost three year old and an 8month old is hard work. Three year old’s like to get into things, like to test the waters and boundaries. This particular three year old likes to bite and when she is frustrated sometimes reverts to head-butting. I can’t help but react to these behaviors in […]
We went to Children’s Memorial today to meet Dr. Burton. When we first got Livia’s diagnosis, the MPS society had recommended we see her. After the Disney conference, Jake and I decided that we needed to go see her because we are Livia’s only advocates and we have to do what is best for her. […]
Our dear friends Stefanie and Justin sent us a new Devotional that Jake and I started Jan. 1st. The title of the devotional is “Streams in the Desert” by L.B. Cowman. Tonight’s devotional hit home for me. It was a reminder that we must have a living grace in order to do life’s work and […]
Livia’s diagnosis has created a new life for us. A life that has opened our eyes WIDE open. It has also brought many opportunities. These opportunities have ranged from small moments to big trips like going to Disney, to newspaper articles, to barn quilts, to prayer blankets and dolls, to meeting new and amazing people […]
For those of you looking for a new post from me, I will be adding one soon. I’ve had lots of thoughts and ideas for a new post, but the time has been getting away from me to just sit down and do it. We are getting ready for our Disney trip, and I have […]