I am coming up on two years since my sweet little girl passed away.  Two years.

How could two years have passed yet I still feel as raw and affected as if it was yesterday.

I have changed so much in the past 5 to 6 years, especially the past two.   Things that were once important, no longer have as much weight.  I have developed more tolerance and patience in some aspects in my life yet in other aspects I have lost these same things.

A dear friend who has known me for more than a decade shared with me what changes she has seen in me.  I was really surprised that it was that noticeable.   I don’t feel like I am that different, yet I can see how I am.

I am content with this “new me.”  Happy?  I admit I am fearful that I will never truly be happy again.  Although I do have many happy moments in my life, and I am working to embrace the good in my life.  But overall happiness?  That weighs on me.

In the end, I believe my journey sharing Hannah’s story on this blog is now over.  My focus is now working on Hannah’s foundation, being a mom to my two older kids, and working on those passions that help me continue to be a “parent” to Hannah.

I am forever a “grieving mother” but I don’t wear this on the outside the large majority of the time.  People don’t know what to say or how to act when they find out.

However, I want the world to know that I am a mom to three children.  Two at home, healthy, and growing up – one who is up in Heaven who I miss terribly and think about often.  Three children.  Three.

Forever my little miss Hannah.  Forever my little love.  Forever in my heart.

I plan to keep this blog online since a lot of people who are researching Gaucher’s Disease type 2/3 find it and, I assume, use it to find more information about this horrific disease.   

It has been a major roller coaster of a month.   So many wonderful things happening yet all of it clouded by the simple fact that Hannah should have been turning 5 a week or so ago.

We had Hannah’s 2nd annual “Little Miss Hannah’s Rainbows in the Wind” event, and the turnout we had was phenomenal.   Not only did we raise more money that last July’s event, but we had such an amazing group of organizations and companies who donated their time, energy, and resources to make this night special.   From top Vegas children’s entertaining groups to our amazing DJ and photographer to over 2 dozen volunteers who came out just to help make our event run smooth!   The outpouring of love and friendship that came to support us at this event … so many wonderful family, friends and colleagues including 4 of Hannah’s awesome nurses, a number of her therapists, and friends we have met in the 3 years we have lived in Las Vegas.

(We should be getting pictures next week from the event – our photographer does amazing work).

The morning after the event, we surprised Ethan and Abby with a trip to visit Hannah’s favorite characters ever – we went to Disneyland!  We had a fantastic time as a family, letting loose and just enjoying ourselves.   We did two special things that I had wanted to do at Disneyland to celebrate Hannah’s birthday – we did a balloon release from the park to her, and we had brought her Minnie Mouse with us to take our family picture.   The kids had so much fun, we hope to go each year to celebrate Hannah.

We needed to get away and decompress from everything – the stress from the event, the overwhelming sadness we were all starting to feel as her birthday approached, to regroup as a family.  At Disney, we all talked about Hannah quite a bit (especially Ethan, which was unusual since he is usually quiet), and it felt like she was there with us many times.

Today, we did a delivery to another Little Miss Hannah family.   It was the same little therapy chair that we wanted so desperately to get for Hannah.  We actually were given a loaner for a while for Hannah, but we never could afford it because it wasn’t medically necessary.    But today I got to give this chair to a special 3-year-old little girl who I just instantly fell in love with.  She reminded me of Hannah  at times, especially how she was instantly hooked on her favorite television show!

We (my hubby, kids and I) all walked away from this delivery today feeling absolutely wonderful.   Ethan was proud because he was the one who assembled the chair so we could deliver it ready-to-go (He has become our master builder!).   We were able to give this little girl something we were never able to give Hannah, and by doing that, we all felt like Hannah was right there with us.

I know this little girl will get so much use out of this chair and tray set, and because of my Hannah, we did what we set out to do — enhance the quality of life for kids like Hannah in our community.

I read something tonight that completely nails it on the head of why I am so passionate about what we do with our Little Miss Hannah Foundation.  It is because THIS is how I am able to continue to be a mom to Hannah, to parent Hannah.  This is how I get to do things for her even though she isn’t here anymore.   Hannah lives on in the hearts of so many people, even those who didn’t know her when she was here with us.

I am proud of my children, all three of my children.  Ethan and Abby’s lives are immersed with the concept of giving, volunteering, and taking care of special children.   I truly believe that this lifestyle we live along with their schooling, sports, friends, and other activities will really get them prepared for their futures.

And I am most proud of Hannah – for being who she was, fighting as hard as she did, and for making me a much better person than I was just 5 short years ago.   I think back to the eulogy I gave at her funeral, and I hope she is as proud of me as I try to live up to my promise to her.

There are just a few weeks left until what SHOULD have been Hannah’s 5th birthday.

I’m still trying to sort out how I’m feeling about this.   Obviously, that is why I continue to blog when I need to get something off of my mind.  I’m waist-deep into planning for our big fundraising event on July 24th, which along with working full time, has been a great distraction from me focusing on it as much as I was last year when I wasn’t working and so new at this foundation stuff.

But as the days get closer, it seems to be getting harder.   Maybe it is because the closer we get to the event, the more I share about Hannah with people who don’t know her – which is wonderful.   But in the same respect, there is a part of me that still feels crushed because I would rather have her with me than just talk about her.

We chose the date because we wanted to do it to celebrate her birthday.  (This year, it is the day before her birthday).  It goes back to my fear of not wanting Hannah to be forgotten, I guess.  She has been gone more than 18 months now and life continues.   Our family has created so many new memories since she has passed away, memories that she is not a part of.   And I feel guilty for that, and angry.

She is still in my mind hundreds of times a day, every…single…day.   I still watch videos of her, look at my online photo albums, and have my little Hannah reminders in many different places in the house.   I have a Mickie and Minnie snowglobe on my desk, a craft angel given to me by another rare mom who lost two young children, her 20 or so stuffed animals on a table in our living room, and so many more things.  I am surrounded by members and things that remind me of her.   Every time I go shopping, I find myself looking for things that remind me of her just so I can have that connection.

Moms are not supposed to lose their children.  We aren’t supposed to watch them suffer while we are so damn helpless to do anything because medical research is just not there for us.  We aren’t supposed to watch them pass away in our arms.  We shouldn’t have to say goodbye forever before our babies even have a chance to live.

Hannah was 3 years old when she passed away.  3 years, 4 months old.   Yet, what should be her 5th birthday is coming up in just a few weeks.   So much time has passed it seems, yet I feel waves of grief just as strong (and stronger sometimes) than when I said goodbye to her that night.

I just wish she was here.

We always hear about the 5 stages of grief.   I think they  need to add one more – Irrationality.   Seriously.   In my head, I know things are a certain way, but convincing my heart that what I’m thinking is something I haven’t been able to figure out.

Mother’s Day is coming up this weekend.   To say that I’m dreading this day is an understatement.   There are a variety of reasons, but the biggest one is because it reminds me how I failed at Mommyhood with Hannah.

Each holiday has its tough moments.   After 16+ months of her being gone, it still feels like my heart has been freshly ripped out of my chest at times.   These family holidays come up, and I’m so actively aware that she is not part of our celebration.

But Mother’s Day doesn’t just make me miss her.  It makes me feel like I failed her.   Failed to protect her from this world.  Failed to take care of her pain the last few months of her life.  Failed to save her.

Irrationality.  My head says that what I’m feeling isn’t right.  That I did try to do everything I could for Hannah.   But my heart is stronger than my head because all I can think about is how I can avoid Mother’s Day and not having to acknowledge it – but I don’t have that luxury because Ethan and Abby are so excited to do something.

Then today…

After lunch with a friend today, I went to visit the cemetery.   When I got there, I noticed most of Hannah’s decorations were gone.  I looked around and saw all of the other kid’s graves were still decorated, and I lost it.   I called my husband in tears, so incredibly upset.

Who the hell would steal my Hannah’s grave decorations?

Keeping her grave colorful, blingy, and full of brightness with color and knick-knacks is so incredibly important to me.  It is the ONLY thing I can do for her now, and I look forward to changing it out every month with new flowers, new seasonable additions.    So when I saw her decorations gone, with the exception of her pinwheel and Minnie solar light, I lost it.   The empty vases.  The little additions around her marker like a Minnie Mouse figurine, lady bugs, and her two bright bouquets from this month were gone.

After I got off the phone with my husband, I went straight to Michael’s to buy new decorations.   It had been two weeks since I had been to the cemetery, longest I have ever been away, and I don’t know how long her area had been like this.  I couldn’t let it stay like that one minute longer.

What happened today threw me into a major funk.  I was so upset, so lost, and felt so violated.    I know that this was just the straw that broke my proverbial back because I have been under a lot of stress these past few weeks including Mother’s Day coming up.

After Michael’s, I went home to get the decorations ready and just went into my bedroom, crawled into bed, sulked, and eventually fell asleep for an hour.

When I woke up, my husband, kids, and I went to the cemetery together and redecorated Hannah’s area.   Missing some knick-knacks, but I will get those this weekend.

Irrationality.  My head says it is just things.  It doesn’t replace our memories.   But my heart is freaking out because I feel like someone took something from her, from me.   I always felt safe visiting Hannah at the cemetery, but now I’m always going to go there afraid of what I might find or what I might not find.  

Irrationality.   Instead of going every couple of weeks to visit, I am going to go more often again.  If this happens again, I can’t let her have empty vases that long.  Empty vases means not caring.   I want Hannah to always know that we are thinking of her, missing her, and still wanting to take care of her.

I am dealing with the hands I have been dealt – some of them great, some of them really crappy, some of them encouraging, some of them destructive.   It is what it is – irrationality and all.