Happy rare disease day. Do you know how many people are struggling with a rare disease? One in ten and hardly any one gets a diagnosis. That means no known therapy. We traveled the county and talked to leaders in the genetic field looking for a diagnosis for our girl and eventually found one through good old googling and facebook. We were the lucky ones. Most people go their whole lives never knowing and knowing was half the battle for our family. Having this rare girl was the greatest honor and biggest blessing in my life and I will miss her every second of every day. This picture was taken when she was still able to pop her little head up off my shoulder and give me big kisses, a skill that would eventually leave her in later years. I wish that i could have done something more for my girl. I pray that more funding and research is done so that no family will ever have to watch their child suffer, deteriorate and eventually leave them.
Monday, February 27, 2017
Our sweet primary includes Lila all the time. She even made it next to her sister on the room bulletin board. The theme was "I can choose the right by...." For Lila they put be an example, which she totally is. For Ruby we said Be nice to everyone, but if we are totally being honest her answer was "play with playdough" that could work to.........
Friday, February 24, 2017
Wednesday, February 22, 2017
Friday, February 17, 2017
Tuesday, February 14, 2017
ruby's valentines. I can't help myself. I love this holiday and all things hearts, pink and glittery
We woke up on valentines day to find the house covered in string. We have been reading a book called "the invisible string" that talks about how we are always connected to our loved ones. even the ones that are in heaven. Quinn surprised us with strings all over that led to our precious girl's painting.
we miss this little lady so very much.
Valentines day dinner