What to do from here

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.