Sunday, March 25, 2012


Why?  That is a question that I get asked frequently and over half of the time I have no answer.  "Why does God have teeth", "Why do butterflies taste with their feet instead of their mouths", "Why are people mean".  These are just a few of the "why" questions that I have received for which I have no answers. 

The one "why" that I can answer is "why did you start a blog?"  For one reason,  my husband keeps bugging me so I decided to try writing one.  However, my main reason for writing this blog is to try to help other mothers/families who are going through some of the same things that we have and are currently experiencing.  If I can help one mother who is in the NICU, one mother who has a child with a rare disease, one mother who is terrified of having a child on a trach and a ventilator,  or one mother who is having trouble juggling "normal" life with a "special needs life" then I will be happy.  My goal is to help raise awareness for my son's rare disease and to give people an insight into the daily struggles and triumphs of raising a family dealing with a rare diagnosis. 

So, welcome to my blog and thanks for reading. 


  1. I love that you started. I had a hard time starting, its that first step into the great unknown. I cant wait to hear your thoughts

    1. Thanks Shelley. I have been thinking about starting one for awhile. I read yours and a few others and realized that I needed to help raise awareness so I could help others. When Noah was first diagnosed, a blog like this would have very helpful.