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, 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.

Monday, June 19, 2017

Father's Day

This past weekend was Father's Day.  We went camping in Lake George (less than an hour away).

While there I was struck by the way our life is "normal" now and just how far we have come in 6 years.

You see, 6 years ago we were sitting in a hospital room waiting for a diagnosis. We had fun plans for the weekend, which we cancelled.  Instead, we spent it in a Garden reading the history of the hospital.

I had started to make a "bucket list" for Dan - things to do and places to go - so we would always have fun memories.  Well, not one thing was crossed off that list.

I found that list about a year or so ago and posted it on our pegboard.  I'm not sure if this past weekend, with playing in the Lake and riding the rides at Magic Forest, were on the list.

But one thing I did realize - you don't need a bucket list to make memories.