Monday, February 29, 2016


I love someone rare! The last rare disease day that actually fell on the 29th was the first one we celebrated as a rare family. (we were still unsure of what was happening to lila that first february) I didn't realize it at the time that it was the only one we would get with our special girl. I wish so badly our angel was with us today fighting for awareness. One in ten americans have a rare disease and 95 percent of rare diseases have no treatments or medications that can help. I will never be able to accurately describe the hell that is watching your child deteriorate from a disease and there is nothing you can do. Let us all push for more legislation and funds to help these amazing families. 

Saturday, February 27, 2016

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. 

Friday, February 26, 2016

Zoo days

The new baby giraffe willow. Ruby couldn't stop saying awwwwww!! 

Poor Eddie. Oops

Thursday, February 25, 2016


This was literally the first time that Ruby held eddies hand without being asked to. I turned around and was scared that I would disturb the moment. It was beautiful.  Maybe there is hope in the horizon? 

Monday, February 22, 2016

Sunday, February 21, 2016

Sunday best

These cuties. Rubys hair is long enough now to fit in a full crown braid and Eddies bow tie was just too cute to not document.  Even if this outfit only lasted five minutes, Eddie has a talent for ruining clothes. 

Painting nails. 

Thursday, February 18, 2016

Midway ice castles.

We were so lucky to get a phone call from our friends the satos telling us that they had last minute tickets to the ice castles in midway. I have been wanting to go all season but they were sold out. They were incredible! Completely breathtaking. 

Poor lady slipped in one of the tunnels 

 Ruby and Mabel.  I love seeing them together. Mabel was one of Lilas buddies. 

Some professional and great shots from the ice castles.