A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Saturday, June 27, 2015


There is this brand new 10 minute movie floating around.  I can't watch it because the emotions run too deep.

IMAGINE was created by a teenager in the UK who found out that there are 4 kids in his town that have NPC.  He was able to get help from prominent people in the film industry to put together this short film to help raise awareness and funding support.

This movie follows Millie, a young girl who has an NPC diagnosis.  It is from her point of view but shows how the disease affects the entire family.

Please take 15 minutes and read the information on this link and watch the movie.


Tuesday, June 23, 2015


Sorry it's been quite on the blog recently.  I've committed to writing more in line with the reason I started blogging....to bring a voice to living with grief and losing a child.  Since Niemann Pick disease is so much a part of our life, that is also a focus.

We've been living in a crazy toddler world recently and I haven't had much of a chance to sit down at a computer and write.  My phone is great for short posts like this, but longer posts and photos don't work well.

Anyway, I just wanted to stop in and say "Hi"!  I have a few posts that I am thinking about over the next few weeks.

Thursday, June 11, 2015

Reality Slap

Scrolling through my Facebook page the past week or so I've seen all the graduation pictures and end of year stories.

For some reason, this year I actually thought about it.  Dan would have been graduating from second grade. 

Obviously it isn't a miletone graduation, but it was a reality slap.

So for everyone who is graduating this year, or moving up in grade levels, congratulations.  Remember to tell them you are proud of them.

Love you Dan-Dan and miss you buddy.

Monday, June 8, 2015


One of the things we loved to do with Dan was to go to the Charlton Founders Day Parade.  We went rain or shine most years.  This parade is the first Sunday in June every year and is fairly short but features all the great parts of a parade... fire trucks, politicians, bands and thrown candy.

We took Shelby to her first parade this year.  It is little events like this that make me realize the difference in my kids.

Faron is holding Dan

Grandpa (my dad) is holding Shelby.