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, March 1, 2018

Another Rare Disease Day is done

Usually I post quite a few items related to Rare Disease Day, held on the last day of February.

I obviously didn't this year.  It wasn't for lack of wanting, it was for lack of knowing what to write.

One year I focused on those with Niemann-Pick Disease.  Another year, I focused on a bunch of rare diseases.  I've even included a list of some of the rare disease statistics.  Some of these articles are still some of my most popular.

Other than losing quite a few of the people I featured, not much has changed in the rare disease world.  I've been blogging for about 6 years, and not much has changed. Yes, there are now some treatments and some clinical trials for some of these rare diseases.  Yes, awareness has increased.

Rare Disease isn't just an awareness campaign once a year - it is a daily struggle for so many.  And so many are dealing with ultra rare conditions, they don't have a name yet.

The 2018 theme was Show Your Rare, Show You Care.  We all need to be a bit more caring to others, no matter if they have a rate disease or not.

Sunday, February 18, 2018

I've Been Thinking book

I've been fortunate to be asked to be part of a book launch team for Maria Shriver's new book, I've Been Thinking, due out February 27, 2018.

In one section she talks about grief and grieving.

Grief is not linear or time bound.  Sometimes the unexpected causes grief to bubble to the surface.  It never goes away, it is always under the surface.

And it is a subject that needs some talking about.

Sunday, January 21, 2018

Get Over It

Thankfully I have never actually heard the words "Get over it".  There have been many people, by their actions, who have made me feel like I should be "over it".

Well, here's the news flash - there is no "getting over" the loss of a child.

I read a great article about "getting over it" the other day.  I encourage everyone, especially those who have never lost someone close to them, to read this article.

The loss of a parent is similar to the loss of a child.  There is one significant difference - a parent had a lifetime of experiences - including going to school, getting married, having kids, etc.  Losing a child also means losing all those experiences.  It's a very different grief process, one that you never "get over".

Thursday, December 14, 2017


This time of year always makes me think about the past year and I always get a bit melancholy.

This year it's hitting a bit harder.  I was going through some "On This Day" posts this week.  I think I realize why.

2011: I spent almost 24 hours editing videos and saving them to CDs to bring to Dan's doctors.

2014: Dan's urn arrived and we were finally able to give him is permanent resting place.  I remember ordering it as soon as my Jamberry bonus arrived and Shelby kissing the bag of ashes (at 16 months) and saying "I love you".

This meteor shower last night also didn't help with the emotional balance.  Plus the frigid weather is keeping me huddled up with comfort clothes and food.

Shelby doesn't quite understand why mommy locks herself in the bathroom at times.  Sometimes a deep cry is healing.

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.

Tuesday, October 31, 2017

The end of October

The end of October Awareness Month is here.  That doesn't mean that I stop talking about Niemann-Pick Disease or my experience or asking for financial support for the families being helped by the NNPDF like we were.  Here are the final quick facts for this year:

Saturday, October 21, 2017

October Awareness continues

If you have followed this blog enough, you know that October has a push for Niemann-Pick Disease Awareness.

If you are new, you can read the detailed story as to why this is so important to me.
For the short version, grab a tissue.  My son was diagnosed with Niemann-Pick Type C at age 4 1/2.  He died from disease complications before he turned 5.

Well before I knew this rare disease existed, and well before we were personally affected, October was designated as Niemann-Pick Disease Awareness Month.  We have an uphill battle each year, against some other more well known diseases. 

But the underdog has continued to rise - with your help.  By sharing my blog posts, sharing from the National Niemann-Pick Disease Foundation Facebook page, and donating, the disease is being identified earlier and treatments are becoming available.

So thank you.  If you are an affected family, please reach out to me.  I am happy to listen, talk, share my experience, and help you find resources to support you.