The Jazz and rare disease day

Utah rare asked if they could honor Lila by having her picture held by another rare child during the national anthem at the Jazz game. 

Ruby loved the dancers and the dancing bear

The " lindseys" snelgrove and Armstrong came to support. These Yale roomies of mine are always doing so much to remember my girl 

We were a little disappointed that they didn't pan the rare kids a little better and get a good shot of our girl in the jumbo tron. Oh well, we loved seeing her smiling face. 

These cute little studs. 

It's funny to me the days that hit me with grief. This rare disease day has knocked me to my knees. It's a weird position to be in. I loved being a special needs mom and was humbled to be in their community but now I am neither ( only in spirit ) I wish Lila was with me. I wish that I could still say we are special needs family. And while I will always be one in my heart that is different than the day to day struggles that these families deal with constantly.