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, November 14, 2013

Thoughtful quote for today

I came across this interesting quote today:

"Here is the test to find whether your mission on Earth is finished: if you're alive, it isn't."
-- Richard Bach,
American writer

There are so many reasons to be alive. To smell the flowers, to see the sunsets, to be loved and to love others. But what is your personal mission in life?

Is it to annoy others? Is it to make every small problem (molehill) into a major problem (mountain)? Or is it to help others? Is it to advance a cause? Is is to be there for others?

Think about your personal mission in life. Is it something you want to change about yourself? Are you happy with what you are doing?

Whatever your mission is, you have everyday of your life to do it, because your mission isn't finished while you are alive.


I don't know if I had a mission in my life - except to be a good person and to love and be loved. All of that changed when I had Dan.

All of a sudden, he became so much of my life - so much of a reason to live my life for him. Things I did, I tried to do for his well-being. When he got sick, really sick, I wanted to be by his side every minute of every day. I went to work because I had to, not because I wanted to. And when he died, I found my mission.

I needed to tell the world about my son - the fighter, the one who endured pain and challenges that I never knew about because he couldn't tell us. The one who got the "short end of the stick" in the medical world because we had doctors who didn't know what they were looking at, who didn't listen to us when we told them we had concerns, who didn't believe us when we identified specific medical issues.

Now it wasn't all the doctors, and once we finally made our presence known by fighting back against them, we were able to provide him some comfort. But he still endured more than he ever should have, more pain than a child should have to endure.

So my mission became to help spare other children that pain and help other families find ways to cope with losing a child.

I sought out the NNPDF to find what I could do to help. I'm now the Treasurer. I was talking with the doctors and researchers (some international) 3 days before Shelby was born.

I am open about losing a child to a rare disease. I am not afraid to show my pain and shed my tears in that grief process. I hope I have brought the subject of childhood death into the "open" and made it more of a discussion.

I have discovered that I want to spend more time with Shelby and if I could, I would be a stay-at-home mom. But that is still a dream, as food, shelter, and medical insurance are important.


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