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, May 10, 2017

Middle of May means....

For many, it means Mother's Day, celebrated on the second Sunday in May.

Did you know the first Sunday in May is International Bereaved Mother's Day?

I saw this article the other day, What Grieving Mother's Want For Mother's Day. Mother's Day is recognized as a celebration of being a mother. But what about those who don't have their children to celebrate? Are they any less than mother?

So between last Sunday and this Sunday, please reach out to a mother who has lost their child.

Monday, April 17, 2017

It's never easy....

I know I vowed to write more. Living with a preschooler, working, and spending time with family have a way of making the time fly.

Until recently.  The first few weeks of April have been hard.  Really hard.
5 children, 1 week

Life is difficult, seeing this cluster reminded me of how difficult life can be and know much we need to just live it.

Five families need to move forward without someone.  It's times like these I am happy to be a part of the Niemann-Pick community. We all "get it" and many of us have been where these families now are.

So I ask all of you to please hold these families in your thoughts, as they will need support to get through some of the hardest days they will ever know. 

Friday, January 13, 2017

2017!?

Wow!

It's crazy that it is now 2017!  Where has the time gone?

The blog has been a bit quiet lately.  Late in 2016 were a lot of grief "milestones" and I had to work through them.

November 11 - 5 years since Dan died - which meant that he had been gone longer than he was here
December 7 - Dan would have been 10 years old

And then Christmas rolled around, and it's just been busy.

I hope to be back to blogging on a somewhat regular basis soon.

So for now, here are a few Christmas pictures.




These are the GeoTrax train sets that we purchased for Dan and Daddy to play with.  Shelby has been enjoying them too.  Unfortunately, Fisher Price stopped making them so finding pieces either means paying outrageous prices for one or two pieces, or getting big tubs of random pieces for a better price as people clean out their unwanted stuff.

Monday, October 31, 2016

It's October - Post 4

Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org






Tuesday, October 25, 2016

It's October - Post 3

Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org





Monday, October 17, 2016

It's October - Post 2

Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org





Tuesday, October 11, 2016

It's October

Ok, so we are over 10 days into the month.  Did you think I would forget about Niemann-Pick Disease Awareness Month? Absolutely not!  This disease has had an impact on my life in many ways.

So here are 5 Quick Facts.  Feel free to share this blog post and increase awareness.  If you are able, financial contributions are always welcome at http://nnpdf.org