Sam's Birthday and a Big Trip

My rainbow baby Samuel Tate turned 1 last week! I can't believe it's been a whole year since he changed our lives and gave us new hope. I still can't get over the fact that he is mine and he's not going anywhere! Life sure is different in every way after a loss. Here are some pictures of his big day. We really just had a relaxing day around the house. It was very nice.






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Tomorrow Charlie and I will be leaving for New York City! I have been moderating the www.lalsolace.org online community for LAL Deficiency. There is going to be a reception for the members of the Wolman's Disease and CESD community; whether it be patients, parents, doctors, and pharmaceutical companies. I will be giving a speech about how our lives changed after Gage was diagnosed with this fatal disease. I will also be speaking about how I want this online community to grow and be involved in lots of the rare disease community events and activities. I am really excited because I have never been to NYC, and I am nervous because they will be playing the video of Gage that Charlie made not too long ago. I am going to be a crying mess. But if we can make an impact on the doctors that can help these patients...that would be wonderful. I really want to change the LAL Deficiency community. I want there to be more than 2 survivors of this disease. And I truly feel that this team of people can do it. And I can't wait to meet those I haven't met yet. I am so blessed to have this opportunity to know these wonderful people who truly care and want there to be a successful treatment. But man, I am going to miss the kiddos while I am gone! Please send positive thoughts my way!!!

Gage, I am so grateful to have the opportunity to honor your life in such a profound way. Please follow me along and hold my hand while I am speaking about you. I love you always, Mommy