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.

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.