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.

Friday, August 26, 2016


Do you remember  bringing the kids to the doctor and being asked if they were doing certain developmentally appropriate tasks?  Like crawling or walking or using multiple word sentences?

For many years, I was always saying that Can wasn't doing something he should be doing...whether it was throwing a ball or potty training.

At her 3 year visit, my beautiful daughter was doing everything she was supposed to be doing on the developmental checklist.

So this is what normal is supposed to be?

I'm not used to normal.  I'm not used to being told "no" in a preschooler tantrum.  I'm not used to sitting and coloring.  I'm not used to make believe stories and playing and sharing toys.

I love all these things.  Yes, I'm exhausted. But this is what normal is.

Monday, August 15, 2016

Another year

We just returned from the most recent NNPDF Family Support and Medical Conference.  This year we were in Danvers, MA.

Every year I meet new people, see old friends ("family") and we all feel safe.  It's a place to learn from the research, learn from each other, and not be afraid to share your thoughts and feelings.

Among all the sadness, with the memorial service and seeing kids you saw walking 4 years ago now in wheelchairs, there is always fun.  We celebrate life, we celebrate each other, we celebrate milestones.

Wednesday, August 3, 2016

Moving On?

I stumbled across this great blog post this morning.  You can read it here.  It's a reminder that angel parents are not broken and we will never be the same.

It's fitting for that reminder this week.  A birthday party for a 3 year old (yes, she is 3!) and then off to the NNPDF conference.  My emotions will be all over.  I think I need my Niemann Pick family this year, even though there are more angel parents and more affected children and I can see the disease progression.  It's comforting to know that others have walked in my shoes and understand and don't judge.