This sucks

As I'm sitting here looking at Shelby napping and the artwork on our walls from her playing with pens, markers, and crayons, I realized what I won't experience and what I will.

A few weeks ago, I picked up Dan's urn to bring it to the bedroom and Shelby reached up and wanted to hug it and carry it. I let her hug it, but it is still too heavy for her to carry.

That's when it hit me.  This is all she knows of her big brother.  All she has is pictures and what we tell her.  Kids are known to see into the spirit world, and I'm sure Dan has been to see and play with her.  I hope she doesn't lose that ability as she gets older.

The realization that Shelby is now doing things that Dan did, and some things that he will never do, also hit me hard the past few weeks.  Her laugh reminds me of Dan. She is throwing things like he did (typical toddler).  But he never really mastered holding a crayon or drawing.  She has masterpieces on the walls.

Every parent compares their children, and when they did certain things.  I am quickly losing that ability. By next year it will be gone.

This is supposed to be a joyful time of year, and Shelby helps remind us of that. But it is also a difficult time of year for so many. Grief never ends.

October is Niemann Pick Disease Awareness Month - Part 4

It's the end of October.  Halloween is over.

It's also the end of the annual Niemann Pick Disease Awareness posts.  The staff at the NNPDF have made some great images this year that I am sharing.

October is Niemann Pick Disease Awareness Month - Part 3

It's October.  The leaves are turning colors and falling.

It's also time for the annual Niemann Pick Disease Awareness posts.  The staff at the NNPDF have made some great images this year that I am sharing.

October is Niemann Pick Disease Awareness Month - Part 2

It's October.  The leaves are turning colors and falling (and we had some snow flurries here!).

It's also time for the annual Niemann Pick Disease Awareness posts.  The staff at the NNPDF have made some great images this year that I am sharing.

An update on Part 1....Jaymee Hernandez, featured in image 2, lost her battle with NPC recently.  You can read more about her here.

How you can help raise awareness

I've posted one set of information graphics.  I have 2 more to do.  Please share the posts or the graphics.  October has so many other diseases that are also fighting for awareness this month.

So besides sharing, what else can you do?  I sell Jamberry nails in my free time.  Yes, I do have a little bit of free time.  One of the reasons I do sell Jamberry is to give back to the community that has given so much to me in support after losing Dan.  I have created this custom periwinkle awareness ribbon wrap.  I have some on hand and can order more.  You have to contact me directly to order though.  It can send them to anywhere in the US (including overseas military addresses), Canada, Australia and New Zealand.  Each sheet is $25.  One sheet will provide enough for 2 manicures and 2 pedicures.  The cost includes a donation to the NNPDF for research.

Don't want to wear them yourself? Grab a set as a gift!  Or let me donate your set to a family who is living with an NPD family member or an NPD angel.

You can email me at jillsjams(at)earthlink.net to purchase a sheet.

The deep purple wrap on my middle finger was made to support Quinn Madeline Foundation, a non profit started in memory of Quinn Madeline

October is Niemann Pick Disease Awareness Month - Part 1

It's October.  The leaves are turning colors and falling.

It's also time for the annual Niemann Pick Disease Awareness posts.  The staff at the NNPDF have made some great images this year that I am sharing.

First Day of School

What happens in your world in early September?  For many, it is back to school time.  Everyone is sharing the photos of their kids going to school for their first day (or second, or third, or...whenever you have a minute in the crazy morning rush to take a picture).

For me, early September means tears and wanting to curl up in a ball and never come out.  Why?  Well, you see, I don't really know.  I think it is because I never had a chance to take those pictures.  Dan never went to school.  He never rode a school bus, he never had a lunch box.  We didn't have to buy folders and notebooks and tissues and pencils.

For some reason back to school hurts.  But that is grief.  It hits at a time you don't expect.  It hits you in ways you don't understand.  There is no logic to it and there is no getting over it.

This is what life handed me, so I have to do my best and adjust.  I'm hoping that in a few years (which will still be sooner than I expect), these raw emotions will ease when we start getting Shelby ready for school.