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 22, 2012

Quiet Weekend Ahead

It's been 1 year since Dan's diagnosis and a bit over 7 months since we lost him. I'm finally starting to get myself back together.

I went back to work on January 1.  I didn't want to go back but in a small office it was tough on everyone else after being actually
out for 7 weeks but mentally out for more than that. I also was working on borrowed time - a concoction my boss came up with to keep me paid since I had used up all my vacation and sick time.

I had no incentive to do much of anything for quite some time.  I finally got back into a groove of things.  I'm catching up on my newspapers (well mainly the comics).  I wrote the appeal for the Medicaid denials.  I wrote letters to get more records.  And all of it this week.  I have some renewed energy.

But I still have 4 months of newspapers to read.  And more record requests.  And cleaning up the messes of paper that are lying around.  But it is supposed to be nice out so I will be sitting on the deck getting some sun and relaxing too.

I am slowly getting back into a routine - paying bills, going out - the routine things.  Each day is another step forward in a new normal.

Thursday, June 21, 2012

Another angel

The cruelty of Niemann Pick Disease came through in the past 24 hours.

Just before bed I read Chelsea Ingram's blog post about her baby Trek and the abilities he has lost over the past few months.  You can see her post here.

Then mid-morning I saw her latest post - she lost her baby today, just shy of 15 months old.

Trek had Niemann Pick, Type A.  This is the most severe form of the Niemann Pick Diseases.  Many babies don't live to age 2, most are gone by age 3.

The Ingram's choose to live life to it's fullest the past few months - traveling the world.  In Trek's short life he had 4 stamps on his passport and his parents and brothers have a lifetime of memories.

Please take a minute and say a prayer of some type for the Ingram's.  I know they can really use them.

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.

Day One

I don't know where this will lead, but I hope that writing will provide an outlet.

It's been about a year since my world was turned upside down.  When my precious little boy officially received his diagnosis, and unfortunately, a death sentence.

Where have I gone from then?  What have I done?

I'm not totally sure.  But I know that I will never be the same.  Life has resumed it's normal course, but it feels wrong somehow.  I feel like I need to do something, but I have no idea what, where, when or how.  I have no desire to continuing living my life the way it is now - get up, go to work, come home, do nothing - repeat.  The work piece is the one that needs to go, well that and the do nothing piece too.

I have almost no creative skills - so sewing, scrapbooking and the like are out.

Advocacy work is great, and I enjoy it, but getting paid is the issue there.

But I need to do something, so for now this is it.....