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.

Saturday, February 28, 2015

Rare Disease Day

Today Is Rare Disease Day.  It is always the last day in February, the rarest month of the year.

This is my angel, my inspiration for this blog.  Please take a few minutes today to think of all those who have a rare disease.  Combined, those with rare diseases out number the number with AIDS and Cancer COMBINED!

I am wearing that I care a little differently this year.  My headband is from my friend Tia, who has a great shop at Hart of Karen.  My nails are 2 custom designed Jamberry nail wraps.  The deep purple was designed by Kacey Lynne Tuls for Quinn Madeline Inc, in memory of a sweet little girl.  The other nail wrap is the periwinkle one I designed for all Niemann Pick Disease families.

So what did you do for Rare Disease Day?

Friday, February 13, 2015

More goodbyes

I have written about Isaiah Atkins a few times:

2014 Rare Disease post here
A Random Act of Kindness here

Unfortunately, I am not writing a happy post now.

Isaiah "Zay" Adkins
01/24/2004 ~ 02/05/2015


Isaiah Adkins, known lovingly by his family as Zay, lost his battle with Niemann-Pick type C on February 5th, 2015 at the tender age of 11 years.

Zay will always be remembered as a treasured son, and a beloved sibling who was always ready with a sweet smile for anyone who had the pleasure to know him in his short time with us. 

His mother, Angela Tackett, writes adoringly about Zay and shared these thoughts about him:
"What comes to mind about Zay is that he never met a stranger or other families whose hearts he didn't touch. He loved the Lord and praised him often. As Zay grew, he was full of love and spread happiness to everyone he was ever in contact with. He is greatly loved and missed by all."

Monday, February 9, 2015

A time of Goodbye

It's been awhile since I posted one of these awful entries....and this one is as bad as they come.... and it isn't even timely.

Three handsome boys.  Two are gone, only one remains.

Brisan Stults (in the center), lost his fight with NPC on March 4, 2014. Brother Parker (on the left), lost his fight on January 23, 2015.

There isn't much more to say other than head to the family website at http://www.bripardun.com and read the touching stories.

Thursday, February 5, 2015

February Goals (and an update on January)

This year I am going to do monthly goals instead of weekly.  But I will still follow the same pattern, reporting back how well I did.

So my January goals were:
1. Finish the draft blog posts. Nope.
2. Participate in the January writing challenge at least 2 times a week. I did good for a few weeks, but my real job took over.
3. Clean up some of the clutter on the blog page. Nope.

1. Expand my team. I had someone excited to join on Feb 1
2. Get a promotion. Nope.
3. Use my Jamberry commissions to purchase the next item on the household wish list. Should be able to do that shortly.

1. Read the newspapers through the end of August. Nope.  Got through July and into August.
2. Finish cleaning Dan's room. Nope.
3. Post items on the Garage Sale websites to sell some stuff.  Did sell a few things.

Here are my goals for February: