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.

Thursday, September 17, 2015

First Day of School

What happens in your world in early September?  For many, it is back to school time.  Everyone is sharing the photos of their kids going to school for their first day (or second, or third, or...whenever you have a minute in the crazy morning rush to take a picture).

For me, early September means tears and wanting to curl up in a ball and never come out.  Why?  Well, you see, I don't really know.  I think it is because I never had a chance to take those pictures.  Dan never went to school.  He never rode a school bus, he never had a lunch box.  We didn't have to buy folders and notebooks and tissues and pencils.

For some reason back to school hurts.  But that is grief.  It hits at a time you don't expect.  It hits you in ways you don't understand.  There is no logic to it and there is no getting over it.

This is what life handed me, so I have to do my best and adjust.  I'm hoping that in a few years (which will still be sooner than I expect), these raw emotions will ease when we start getting Shelby ready for school.

Wednesday, August 26, 2015

Gut check

Grief is a funny thing.  Always there and always unpredictable.

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.
She is laying on the toy car mat that used to be in Dan's room.  Her head is near a memorable spot too.

So we started cleaning and organizing his room.  We always said we would let her pick her room and she is spending more time in there than in her room.

Then the gut check happened.  As we were cleaning and organizing, we found things we weren't expecting.  And in places we weren't expecting them.  Needless to say, I became a ball of tears.

Just one more reminder of what (and who) is missing.

Wednesday, August 12, 2015


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

Tuesday, August 4, 2015

Summer time

It's mid summer.  That means 2 things in our house.  A birthday girl and the NNPDF conference.

I can't believe this girl is almost 2! She has her own unique personality and brings so much joy to our lives.

At the same time that we are celebrating, we are also experiencing wild emotional swings at the NNPDF conference.  While the conference is a great time to visit with people who understand, it is difficult to watch those affected.  There is so much more support and information now than there was just a few years ago.  

So for the next week or so, please think about all the families who are living with NPD and those families who have lost a family member.

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.