Living in Park City is a blessing. It is absolutely beautiful. The snow finally came…

Unfortunately, it does not make it easy for us to exist outside.  A lot of our neighbors and friends are out skiing, ice skating, sledding, etc. I wish we were the family that could do it all day without thinking about it. However, the pain level the children experience after 20 minutes outside…just is not worth it. Their feet, their hands and their faces ache and then the fatigue sets in. We went sledding yesterday. When we got home, the four of us could not get out of bed for a few hours. Both Lucy’s and Ava’s faces were covered with the red dots that come with the autonomic neuropathy. Ava’s shoulder hurt as well as her tummy. Was it worth it?  Yes. We want to do all the fun things outside like other families. We just have to realize our limits. We feel blessed that we can experience a little of the outdoors.

I hope people realize how lucky they are that they can regulate their body temperature correctly.  They are blessed. Truly blessed.