I was going through my videos of Hannah on youtube, and I came across the last 4 videos I uploaded.

They are videos that I made during Hannah’s last few weeks when she was having episodes.   We took video of them so we could show her hospice doctor and nurse to help better manage her medications because she was so uncomfortable.

I HATE these videos.  They are private, so no one can access them without a link.   I actually have not watched them since they were originally uploaded, and I don’t have any desire to ever see those again.   She was so uncomfortable, struggling so hard.  She was truly suffering.  Worst feeling in my life…

It makes NO sense in my head.  I will never, ever watch these videos again.  Even seeing the thumbnails on my youtube account remind me of those last few weeks of her life and the sadness I felt watching her in so much agony.

Yet, I can’t delete them.  I don’t know why.  My heart says I can’t delete them because it is still a video of her.   I can’t delete any piece of her.

My heart wins out on this won for now, but my head just doesn’t understand why.

I’m finding it harder and harder to come up with things to talk about in my blog.

For over 3 years, my focus was on fighting to give Hannah the best quality of life.

Hundreds of hours researching and searching out people to help me understand Gaucher’s disease and what was on the horizon for treatment.  I even talked to people about thinking outside the box, trying to see if there were things readily available that may be able to save her life (such as cyclodextrin for NPC patients).

Doctor visits, biweekly Cerezyme infusions, and therapy visits were the bulk of my Hannah calendar.

But most of all, I blogged about my amazing, beautiful, and awe-inspiring little girl.  I was able to share the good times, the milestones finally reached, and the unconditional love I felt from her every moment of her life.  I broke down and shared some (admittedly, not all) of the hard times, the emergency room visits, the loss of skills, and finally, those 7 weeks she was home on hospice while we waited for her body to rest.

But now I don’t know what to do here.  I am actively working our my Little Miss Hannah Foundation, and I have a blog set up there for news and important things happening.  But that isn’t about me, it is about the organization created in her memory.

I don’t blog much about Ethan and Abby, never have, because I have always felt that their life with Hannah, their feelings, and their reactions will be their stories to share if they want to.   I know many of their friends’ parents read my blog, and all I can share with them is that I hope that they continue to have their kids reach out to Ethan and Abby because they need time with their friends more than anything right now.

The only time these days I really feel the desire to blog is when I am feeling down.   Hannah’s death has brought up so many other issues in my life that I am having to deal with, none of which I feel comfortable blogging about.   My blog has always been my therapy outlet from the beginning, but only dealing with my relationship with Hannah and our journey together.   But that journey has abruptly ended, and it has shattered my heart and soul.

Grief is a depressing subject to talk about, especially to read about.   Do I want Hannah’s blog, which was once filled with hope and fight, to become a story of grief and longing?      I don’t know.  Do I continue my blog as a tool to continue fighting for other children yet being real to how I feel?   My blog helped me navigate that “other” world, the one that made my heart so full of love but also filled with so many trials.

I guess with so many other areas of my life right now, this one is a jumbled mess in my brain as well.   What is my role now?   I feel like a big part of my identity over the past three years has been violently stripped away, and all I am left with is a big hole with no clue what to do to fill it in so that it is nice and secure.

A big hole in my heart…that is really what it comes down to.    I’m just not sure if what worked before (blogging) will help me work through this.

I saw this news piece tonight about a teenager who passed away.  The mom of this girl (who has two other kids) made a comment that just hit me to my core…

“I’m just trying to find a new normal without having the missing piece of our 5-piece puzzle.”

That is EXACTLY how I feel.  I’m trying to figure out this new life when all I want is to get my missing piece back!

I read my friend Sarah’s blog tonight, and even though Hannah hasn’t been gone as long as Cooper has, I can relate to every…single…thing she feels.   I could have written almost every sentence of her post.

I’m still feeling very lost at times.

I tried to get my old job as a medical transcriptionist back (I still want to work from home for Ethan and Abby).  I did it for five years before I had to go on bedrest when I was pregnant with Hannah.  My old company offered to bring me back on…if I passed the test.  I tried…I just couldn’t seem to get the hang of it.  I spent 2 hours on three 2-1/2-minute dictations, and I just could not get it.  It was as if my mind couldn’t process it anymore.   I felt defeated because it was something I was so good at a few years ago.  But I guess I’m just too rusty.

Dropping my masters courses was a good thing.  I do feel like there is a big weight lifted off my shoulders right now, even if it is only for 60 days (or I have to drop out completely).  I was thrilled though that I got a 97% on my previous class though.

Putting together the Little Miss Hannah Foundation is so much more complicated than I ever imagined.  It is truly setting up a brand new corporation and business structure!   There is just SO much that needs to be done and in so many directions.  I really just want to get to the point where we can start getting involved with families, doing what I know in my heart  is Hannah’s legacy, but there is just all these other important projects that must be done before we even get to that.

You know, it is hard knowing that I need to figure out a new “normal” life for me when I am fighting so dang hard wishing Hannah was back with me.  I don’t want a new normal, and I may be childish, but I feel like throwing myself down on the ground and throwing a tantrum yelling “I don’t wanna do it!”

When I am alone in bed or on the couch, I try so hard to remember how it felt to cuddle with her.  Trying to remember where she put her arms and legs on me.  Trying to remember how her skin felt and how she smelled.  It is getting harder and harder to remember now.   Trying to remember her smile!

I find myself looking for pictures of her lying on me just so I can at least see how she was even if I can’t feel her anymore.

Just sucks.