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.
Showing posts with label fun. Show all posts
Showing posts with label fun. Show all posts

Saturday, December 9, 2017

Time to slow down

Have you ever looked at your day or week and said "where did the week go?" and your to-do list was never touched?


Yeah, well I did that today.  And I realized that most of that busyness was created by others and we were just reacting to it. 

It wasn't due to things that we were planning on doing, it was all the extras that everyone else decided were important for us.

Well, after this realization, it's time to make what my daughter and husband and I want to do the priority.  We get so little time together as a family, we need to make the most of it.

So last night we went to a kids Polar Express party where Shelby created ornaments and a mug.  Today was breakfast with Santa (to benefit a local non profit) with a bounce house and putting our own tree up.  Tomorrow is a kids Christmas party for most of the afternoon.

Yes, we are busy.  To see the joy on her face as she experiences new things, and remembers things from past years, is priceless.



Sunday, August 6, 2017

A celebration

I am so blessed to have a beautiful, healthy girl.  And this weekend we celebrated her 4th birthday.

As I sat down to write this blog entry, I realized how different the 4th birthday parties were for Dan and for Shelby.

First, there is the obvious: winter and summer.  And the other obvious: boy and girl.  These don't bother me.

The not so obvious things are what made me pause while writing.  A request for toys made for 2 year olds vs. toys made for 4 year olds.

And 4 was the last birthday Dan had.  We didn't know it at the time, though.  His birthday always felt rushed - wedged between Thanksgiving and Christmas, and usually the same weekend as the firehouse kids Christmas party where we would get Santa pictures every year.

Shelby keeps me so busy, I usually don't have time to dwell on the differences between them.  I do know that some of what we do is a reaction to losing Dan so early, and some things we were never able to do for and with him.

So we celebrate. We celebrate 4 wonderful years. We celebrate life. We celebrate a healthy, beautiful princess.

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.



Friday, September 5, 2014

A Mid-Life Crisis? or Doing Something for Me?

You hear about men going through a mid-life crisis and buying sports cars or dating younger women.

Women can also have a mid-life crisis.  No, I'm not buying sports cars or dating younger men.

But I did turn 40 this year, and life has been challenging the past few years.

So I went out of my comfort zone and did something that some may think is crazy - I became a Jamberry Nail Independent Consultant!


What are Jamberry Nails?

Friday, August 15, 2014

A Wonderful Birthday

Can you believe it has been a year since my rainbow baby Shelby was born?  It's amazing how quickly time has gone.  Ms. Shelby is all crawling over the house, getting into things and standing on our own.

We had a nice quiet actual birthday celebration.

 With mom and dad