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, June 20, 2012

Special Groups

I am part of several special groups.  I didn't ask to join any of them, and there are times when I wish I could leave them too.  But they are a part of me, and I am a part of them - permanently.

Parent to a Special Needs Child
This was the first group I joined.  Although the special needs may be different, all the members are the same.  We only want the best for our child, and we will fight for what we need.  We will not let our child believe they can't do something due to their different abilities.  We will be there to help them along the way.

Parent to an Angel
We are those who grieve the loss of our children through still birth or other means.  We are not supposed to bury our children, yet here we are.  Our children will always live on in our minds and in our hearts.  But we will never stop grieving their loss, and what they will never experience.  We will never "get over" it; we learn to live through it.  We have a special bond with other parents who are also members of this group - for they are the only ones who truly understand.

Parent to a Special Needs Angel
A group of parents who had their special needs children taken from them too soon.  We fought for their lives, to make their lives better, to provide for them.  Now they are gone, and with them all the fighting, all the sleepless nights, all the worrying, all the coordinating.  A significant part of our life is gone, and it's not just our child - it's everything else too.

Parent to a Niemann-Pick Child
This is a growing group, unfortunately.  More research and better testing is providing more diagnoses.  But no cure means this group will continue to grow.  But we lean on each other, provide support during the tough days and rejoice at the small milestones in the road.  We learn from each other and are there to lend a hand, whether in person or in spirit.

Parent to a Niemann-Pick Angel
This group is bigger than it seems.  We all miss our children, but we know what the disease did and could have done.  Many of us will continue the fight, to provide opportunities for research into a cure so others don't have to experience what we did.  Others will find ways to directly support families who are living with Niemann-Pick, for we all know that because it is rare, getting needed support and supplies is difficult.


So those are my groups.  I'm sure there are others, but these seem to define who I am these days, and probably will continue to define me in the future.

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