Archives for March 2012

We have had a crazy nonstop weekend.  Started first thing Friday and didn’t stop until about 10 pm last night when we got home and rushed the kids off to bed for school.  It was all good things.  Parties, shows, friends, etc.

Even made two trips to the cemetery to visit Hannah to redecorate her area.  Out with the Valentine’s stuff, in with Spring.

And then last night after everyone went to sleep, I just broke down.

Guilt.  So much guilt.   Guilt because we would have never been able to have such a fast-paced weekend with Hannah’s needs.  Guilt because her life supporting medical equipment doesn’t restrain our activities anymore.

Guilt because it was an easy and jam-packed weekend.

I don’t feel guilty because it was fun.  I feel guilty because I know it wouldn’t have happened if things were different.  And then the guilt turns to sadness because in my heart I would gladly give up these fun, pick-up-and-go days, just to be home with her.

I didn’t like the lifestyle that Gaucher’s disease caused us to live in, especially her last year.  But I LOVED my life with Hannah to that last minute I got to hold her when she passed away.  I would gladly take back that lifestyle just to have her back in my life.

Then it hit me last night.  The price of freedom from that medically-constrained life was having to lose Hannah.

Can I turn this freedom in for a refund and get my Hannah back?!

Someone once told me that the children in Heaven play on these streaks because it is one of their only connections to our world.

“Hannah is out playing”. When Abby and I see the streaks coming from the fighter planes, we always think that Hannah is out playing. When there is more than one plane out there, Abby will say “Hannah is out playing with her friends.”

Thank goodness we live near an Air Force base. Gives us a chance to look to Heaven often ♥

If you had told me four years ago that I would be knee deep in a world where children fight like warriors, parents fight like superheroes, and where my heart and passion would be on the front lines with these families and the amazing medical teams and organizations that help families fight and survive…I would have thought you were crazy.

Four and a half years ago, I was a work-at-home mom doing medical transcription (ironic, I know) and I had just enrolled in the last class I needed to become a credentialed teacher in Texas.   I remember telling people that life was “content.”   Great neighbors, great school for Ethan and Abby.  Hardly Norman Rockwell, but nothing major was going on in our lives.

But I wasn’t truly just happy.  Something was missing.  Daddy and I would often think of organizations to get involved with because we wanted to do something meaningful.   But it felt like picking a name blindly off a list as to where we wanted to help.  Nothing specific called out to us.

Fast forward to today.

I won’t say I’m happy.  I’m not content.  I’m not.  Far from it.   But there is something that I have now that I didn’t have before.  PASSION.   There is a fire inside of both my husband and I that we didn’t have before.  It goes way beyond just “wanting to be involved” like we did four years ago.

It is an intense need to make sure changes are made in a system that, we feel, is currently flawed.   It is an internal drive in our hearts that encourages us to go out there and help those who really deserve to be cared after.   I can honestly say I never, ever felt this way before in my life.

Thank you, Hannah.  Just another one of the many important gifts you have given me.

I love you, baby girl.   I miss you.

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.