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.

Wednesday, September 25, 2013

What if ?

This was my horoscope from a few days ago:

Is there a chapter from your life that you would love to dramatically revise? Do you keep mulling this thought over and over in your mind, wandering "what if" I did it this way or that way? If so, you surely know that you cannot rewrite history. You cannot remove that chapter and replace it with something else. But what you can do is go back over it (but not obsessively) and try to draw some kind of wisdom from it. And then, instead of trying to rewrite what can't be rewritten, write a new and wonderful chapter that will incorporate what you learned. -- Copyright © DailyHoroscope. http://bit.ly/DHmobile

I'm sure all of us have some chapter in our lives that we want to rewrite.  But since we can't we need to learn from it and move forward.

For me, there are so many things I would have done differently with Dan.  Some decisions I made because I didn't have enough information to make a better decision.  Other decisions were made because I didn't have enough time to make a decision. And still other decisions were made because I didn't fight for what I wanted.  But I can't go back now, I can't save my baby boy.  I have to live, learn, and share my new knowledge.

This is why I created a group for parents of kids with special needs of any kind.  We share information with each other that you can't get elsewhere, like what does Medicaid cover or who to contact for some particular equipment.  We share resources like places that are wheelchair accessible or online resources or classes on how to advocate for the services your child needs in school.

This is also why I wanted to give back to the Niemann-Pick Disease community. I joined the Board of Directors to be a vocal voice for all the families that don't know what they are dealing with.  To provide assistance and guidance to those who are newly diagnosed or are overwhelmed.

Take a minute and re-read the horoscope above and think about what you can learn from the chapter of your life that you want to rewrite.  And how you can incorporate those lessons to your next chapter.


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