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.

Monday, October 16, 2017

October Awareness - Vision of Hope

The National Niemann-Pick Disease Foundation has been around for 25 years, providing support to families and funding promising research.

In recognition of that, the Vision of Hope Campaign is encouraging donations of $25 in recognition of the 25 years.

In addition, I am giving 25% of all Jamberry sales during October to the NNPDF.

And I can't forget about the information squares for this week:





Sunday, October 8, 2017

October Awareness has begun

Every October I post information about Niemann-Pick Disease.  October is the month selected to share Awareness.  Yes, we are in an uphill battle against some other awareness months.  But we persevere.

This month, I am donating 25% of all sales from my Jamberry business to the NNPDF.  In addition, my entire commission is donated for my Niemann-Pick nail wrap and a coordinating lacquer, So Presh.  Go check them out.

Here are the first 5 facts for October. Share them from new new NNPDF Facebook page






Thursday, September 21, 2017

Diapers

Dan was in diapers from the day he was born (premmie) to the day he died (size 5/6).  I was fortunate to have family help pay for them for many years and then NYS Medicaid reimbursed me for some as well. 

Those families with children who have special needs have to find a way to pay for them until at least age 3, sometimes longer. 
 
The need is there for more  than just those with special needs. Can you believe that 1 in 3 families have to make a choice between buying diapers and buying necessities like food or electricity.



Let's make sure all babies have enough diapers.  Order some holiday gifts at http://jillflinton.jamberry.com and help support No Bottom Left Behind Diaper Bank!

Tuesday, September 5, 2017

School days

Well, it's happening again.  It's the first day of school.  Something we never had a chance to experience with Dan.  And every year, it hurts seeing all the kids going back to school.  I feel my heart break when I see pictures of kids that are Dan's age - knowing what grade he would be in, what he would be doing.

For some reason, the start of the school year is a trigger point for me.  Maybe it is seeing the kids get a year older.  Maybe it is seeing what they are going.  It makes me realize how much I have missed. Don't get me wrong, I love seeing the pictures. It's just something we never had the chance to experience.

Shelby is starting Kindergarten next year.  I wonder if some of these feelings will ease. 

Saturday, September 2, 2017

Conference is over... Our work is just beginning

During May, June, July and early August, I spent countless hours organizing materials, helping with Conference logistics and making sure families were well supported.

One major aspect of the conference is our memorial table.  This year there were 9 frames.  Still 9 too many.
Progress is being made, slowly.  In the 5 years we have been going to the NNPDF Conferences, we have gone from 0 clinical trials to 4.  There is still much that needs to be done.

The other big highlight of the weekend is the Gala dance.  And a little girl enjoyed every minute of it!







October is coming.  That means awareness and a campaign: $25 for 25 years of support to families. Please watch for ways to contribute.

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.

Friday, June 30, 2017

Random musings

Life and death.  It's a cycle for us all.  We don't know how long that cycle is.  So we live our lives doing stuff.  And then something happens to make you realize that the cycle is shorter than you think.  What do you do then?

We are all born for some reason. There is some "job" that each one of us is responsible for.  You may never know what it is, or it could be something spectacular.

So where am I going with this?

The past few years, I have really been thinking about who I am, what I want to do is with my life, how I want to live my life.

I've realized a few things:
1. Dan was here to help me give back after he was gone and to help me start this introspection.  Dan led me to the NNPDF. While it hasn't been an easy road for the past couple of years, the NNPDF is now in a different place and is moving in a good direction.
2. Shelby is here to make me slow down and smell the roses. She loves spending time with me doing silly things.  Her desire to be with me as much as possible has made me look at where my life is and where I want it to be.
3. Finding Jamberry and joining the company appeared to be completely "out of character" for me.  But it came along at the right time to help me with understanding who I really am and why I am involved in the things I'm involved in.

Taken separately, each can seem unrelated.  Taken together, I am seeing a different picture of who I am and what I want in and from my life.

Some people may call it a "mid life crisis" and maybe it is.  I call it discovering who I am.