Over the past few weeks I know 3 people who have lost people close to them. One stuck me a little harder than the rest.
But what really struck me was that my daughter is growing up.
The 23rd NNPDF Family and Medical Conference was held in Chicago this year. That meant it was drivable...12 hours each way. Yes, 12 hours in a car with a 2 year old. Truthfully, I would do it all over again! We split the trip into 2 segments of about 6 hours each.
We had leisurely and scenic drives. We had new experiences. We spent lots of time together. We enjoyed our trip.
Yes, it was emotional. There were new friends to be made and old friends to hold close. Here is the short version of our week: https://goo.gl/photos/VJzP4rpPe8nRiBRG7
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.
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.
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.