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, January 24, 2013

Feeling "off"

Ever have a few days where things just don't seem right?  There isn't anything physically wrong, not sick or anything, you've slept the right amount, you've eaten the right things, but something just doesn't feel right?

Well, that's been me for a few days...which explains the blogging absence.

I still don't know what caused the "funk", but I may have found at least part of the answer.

Being the parent of an angel, and an angel with a rare disease, you become "connected" to other parents in strange ways.  Over the past week, there have been a few families who have reached "milestones" in their grief journey - one passed the 6 month mark, the other the 1 year mark.

Both these families lost their children after Dan.  Both lost their children to the same rare disease (although one had a different variation).  Both families are adjusting to life without their children.

Here is a quote that I've been seeing quite a bit of recently:

“It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.”
― Rose Kennedy

1 comment:

  1. Oh Jill, I don't even know how to describe what your post made me feel, except a desire to let you know that I think of you and Dan and all of the NP families daily. Sharing your journeys has created a familial connection for me that I am very grateful for. The stories of your precious babies have changed my life and the way I relate to others in this world. Please know that your sorrows, joys, little "funk" and just plain average days are very much cared about.

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