They have this sign all around the cemetery saying that anything not left in a vase will be “discarded.”  I get it, it is their rules.   We knew about that rule when we first made arrangements.

But since Hannah was laid to rest and through the holidays, it looked like that rule, especially around the children’s area, was overlooked.  There were amazing decorations, most within reason, and only a few that were just, well, crowding their neighbors.

Hannah had her two vases, her big Minnie and a medium Minnie from two still-yet-to-have-been-found-out visitors.   She also had her three little Minnie and Mickey figurines from her 3rd birthday cake that her grandparents left for her.

I go and visit Hannah a couple of times a week.   The space next to her on the side is empty, so I sit down next to her.  Sometimes I talk to her.  Sometimes I just sit there taking in the peacefulness and not saying a word.

Even though I know that is just her physical being there, it still has a strong attachment for me.  Stronger than I wish to admit sometimes.  It is like that same feeling I had when she was in her casket before the funeral.  She is just so close.  I just can’t touch her, but she is right there, just a little bit away from me.

I went and visited her this previous Wednesday while Abby was at her volleyball practice.  I was feeling a bit guilty because it had been almost a week since I had been there last.  It was just a quick visit, but I always like to make sure that her vases (which are temporary until we get her real ones next month) are upright and things aren’t being blown around.

I went back a couple of days later because I was at an appointment just down the street, and I was completely crushed when I saw that Hannah’s Minnie Mouses and little figurines were gone!   I looked around to see if the wind has blown them away, but then I noticed that her figurines were placed inside her vase.

Then, I looked around at the other children’s graves, and I realized that it happened…they cleaned up anything not in vases and “discarded” them.

Yep, I was disappointed.  Even though I knew those were the rules, I just thought it was overlooked.  I had wished I had taken those Minnie Mouses with me had I known!

Then the great wind storm of Vegas hit on Saturday.  It was crazy!   Huge trees falling into the street, our patio umbrella cracked in half and almost destroyed our glass patio table.   We had an hour to kill before Abby’s volleyball game, so I suggested to Daddy that we go visit Hannah and grab her vases and figurines so they don’t get blown away.

The kids, Daddy, and I got there, and I am glad we did.  Things were flying around everywhere!   Hannah’s two vases had already toppled over in the wind, but I was glad that at least they were still there.  So we grabbed them and all the decorations that were previously in them and put them in the car to bring back later this week after the storms pass.

But this is where I get angry at myself.  I am bothered by the fact that Hannah now has nothing to decorate her grave!   Yes, even though it was my decision because I would have been more bothered that her decorations had been blown over or blown away, I was still bothered.

In my head it makes no sense.  My sane brain knows it really isn’t going to make that much of a difference if she is unadorned for a few days.

My insane grieving brain feels like this is the only remaining thing I can do to take care of her now.  Physically she is gone, I know that.  But having her grave “taken care of” and “Hannah-fied” makes me feel like I am still able to give her something.   My insane brain is feeling like I am letting her down.

But my sane brain knows better.  I wish it had more influence over my insane brain.

 

It has been six weeks since Hannah passed.  Only six weeks.

In the past few weeks, I have gone to two parent bereavement support groups, and I have met some wonderful parents.   I have also been reading a book on grief and been looking at a website where other mothers who have lost children share their stories.

I have come to the realization that our situation is so very unique, and it is in a good way.

Hannah was always loved, always happy.   From the day she was born until the day she passed, she was smothered with love and kisses…every…single…day.   Up until those last few months when her brainstem irritation and progression had brought us to the “end stage”, she was just a very happy and smiling girl.

We were able to give that to her.   Everything and anything that made her happy, we gave it to her.  If she threw a tantrum, we happily gave in just to see that smile on her face.   I can’t think of a time where we ever said “no” to her!

I keep reminding myself of how much she loved to be cuddled and sung to, about how she couldn’t fall asleep unless she was snuggled in our arms.  And then, when it was time for her to go, she was snuggled in the arms of everyone in our family and good friends at one point that week.

Finally, in the end, she was snuggled in mine when she finally left.

But it is not only that.  Those 7 weeks in hospice, when she was mostly out of it and unresponsive, she gave us a gift we didn’t even realize at the time.   The gift of a slow mourning and to start the grieving process slowly instead of instantly, to get our heads wrapped around the idea that she was leaving us.   She gave Ethan and Abby a chance to give her love and kisses every day and yet, she still gave them a chance to say goodbye.

She gave all of us a chance to say goodbye.

I realize after going to these support groups that most families are not as fortunate (if you can use that word) as we were.   As much of a hell it was having to go through it for us, it was always on Hannah’s terms.  It was always surrounded by love.   Most importantly, for those last seven weeks, there was always someone who loved her with her every minute of every day.   Whether it was me or Daddy, or one of her nurses who truly cared about her, or laying peacefully in her grandparents arms with her little nieces smothering her with kisses.

Actually, if I really think about it, every single minute of her life, even before her condition significantly worsened…she was always with someone who truly loved and cared about her.  She was never really alone.    Wow, I really never thought about that before!     She never went to school, never had to be in daycare, and with the exception of those few days when I was hospitalized last year, she never was away from me (but she had her Daddy and his family when I was in the hospital).

And because we were in the hospice program, Hannah never had to go through the criminal or autopsy process (which would have happened if she passed away and we were not in hospice).    When she was done fighting, she was able to truly be at peace.

Unlike many of the families we have met, there are very few big regrets that we have.   We don’t have any “Oh, I should have been more…” or “I should have watched out for…” or “She should not have …” or “If she only didn’t ….”.   I never realized what a heavy burden it would be on my heart forever to have such a big regret after losing her.   But I know that we truly did everything we could to give her the best life, to reach out above and beyond to the Gaucher and other researchers and community.   I have peace in my heart with respect to the big things, and I never realized how important that was in this grieving process.

I still miss her like crazy, and I still have my moments that I have a mini-meltdown because I miss her so much.   But after meeting other families and hearing their stories and reading some other stories parents have gone through, I truly appreciate how blessed I was to have things play out how they did.   It could have been so much more traumatic for our family.

Having our focus on our Little Miss Hannah Foundation is a huge part of this acceptance because it is a chance for us to think about her every day and be reminded of all the positives she gave us and will continue to give us.  Working on her foundation is giving her spirit a chance to live on, live on long past her physical life with us.

I know that in time I am going to be okay.  The kids in time are going to be okay.   Daddy in time is going to be okay.   I know there will be more bad days to come, but I have to accept that it is going to happen.  As a dear friend said to me, “Allow it to happen and don’t hold it in.”

I should probably bookmark this entry to remind myself of this when I am feeling really depressed.

Now, off to take my Lunesta so I can try and get some sleep!   Yep, still have the issues with nighttime but I’m hoping that some real sleeping meds can help me with that.

These last few days, I have had some rough moments where I was really, really missing Hannah.

Tonight was a good night.

Daddy and I met with some good friends tonight who were interested in helping us get the Little Miss Hannah Foundation off the ground.   They were all people who knew Hannah, who cared about Hannah, and who believe in our ideas behind what we want our new nonprofit to represent.   They believe in what we want Hannah’s legacy to be about and are willing to help us get there.   Some were here in our house, and we had others who joined via Skype.

We have to get through the business end of things first, which Daddy is going to take control of.  The LMHF now has a board of directors, and we are going to get our articles of incorporation and bylaws ready so we can incorporate.  Once we incorporate, then we will be able to start working on what we need to obtain 501c3 status.  It is a LOT of work to get there.   Fortunately, we have a secret weapon, a wonderful woman who runs a very successful and huge local nonprofit who has helped us tremendously with questions and paperwork suggestions.

We are also have the beginnings of a game plan to get our first of three programs started, hopefully in the next few months.  I will share more details once things become clearer because I want to make sure we have things in place before I share it.

It was also nice to be able to talk about Hannah.   How brave she was, how beautiful she was, how strong she was.   She was…she IS such an important part of my being still.   She deserves to have this.

After everyone left the meeting, Daddy and I sat down and just breathed.  It became so much more realistic and do-able tonight after talking with everyone.

The Little Miss Hannah Foundation is on its way to becoming a reality.  It has a strong foundation of good people, smart people, people with big and caring hearts.

I have some really amazing people in my life.  With their help and guidance, and with the support of so many others who have offered help, Hannah’s legacy will be a reality.

Because of Hannah, other families with children affected by life-limiting diseases will be empowered, supported, and cared for like they have never been before.

To my Little Miss Hannah, you will change the world.

Daddy and I did something last night that we haven’t done in a LONG time.  We went out on a “date!”

I know, after almost 15 years of marriage, it wouldn’t seem like that big of a deal, but we haven’t been able to have a real nighttime date in years.  We have had a few quick dinner dates, but we always felt a rush to get home to check on Hannah with the nurses.   I just never really felt comfortable leaving for long periods of time.

So my inlaws took Abby and Ethan for the night, and Daddy and I were going to do something fun and not worry about what time we came home.   We decided to take advantage of living in Vegas and head out to the strip, have dinner, and do whatever else we came up with!

Problem #1.  We are so used to having to eat early because of the kids, we left the house at 5 pm and headed out.   That mean, a normal-with-kids 5:30 pm nice dinner.   Our first clue that we were old is that there were not a lot of other people in the restaurant at Mandalay Bay!

Problem #2.  We didn’t have a plan.   So since we started out with such an early dinner, we were done and ready for action at 7:15 pm.   We were thinking about catching a comedy show or hanging out in a bar and listen to music.

Problem #3.  Nightlife entertainment, even just live music in bars, didn’t seem to start until 9 pm or so.  We were WAY too early.   We walked around Mandalay Bar, Luxor, and a couple of other hotels on that side of the strip and people watched.

We looked at what movies were playing, and we just didn’t find something we both wanted to see.  So we headed home.   Yep, our “stay out as late as you want” date ended at 9:30 pm.   We crawled into bed, watched some TV, and Daddy was asleep by 10:30 pm (me later).

But it was wonderful waking up in the morning with no kids fighting with each other!

Even though we are a bit rusty and these date nights, we are definitely going to do it again, but we are going to plan things out better.  Especially a normal ‘date night’ dinner time!

Just hope we can stay up late enough to do it!

I received a CD recently of pictures that were taken at Hannah’s first birthday party in Texas.

It was so exciting seeing these new pictures of Hannah, as I had never seen them before.  Also, the friend who took them is an amazing photographer so they really were just beautiful (like the one on the left).  She really captured some of Hannah’s adorable mannerisms she had at that age, some that had slipped from my memory but are now back in my heart.

I realized that now that there are only a finite number of pictures and videos of Hannah out there.  There will never be another new picture taken, another video captured…Every picture and video of Hannah that will ever be taken has already been taken.

Makes me sad.   I feel like I’m on a mission to find every single picture or video ever taken of her.  I want to be able to have every one that is out there.  I know it isn’t realistic.

Sometimes memories fade.  They disappear without us even realizing it.    I have very few pics of me when I was younger, and I miss that now because I really don’t remember a lot of the little things we did in my family or friends growing up.

Maybe that is why I have taken hundreds of pics since we brought Ethan home.   I don’t want my kids to forget any of the little things we did while they were young.  They will have amazing stories to tell their children and grandchildren some day because their memories will be rekindled by these pictures.

My heart hurts because I can’t take anymore pics of one of my favorite subjects.    I can only look through the pictures to see that adorable smile, the curls in her hair, the little birthmark on her leg.  I took closeup pictures of her hands and face a couple of days before she passed because I wanted to be able to remember everything I could about her.

But pictures and videos will never fill the void I feel by not having her with me.  Cuddling me.  Smiling at me.  Her huge grin when I sang “You Are My Sunshine” to her.  Her smell, her touch, her warmth, her fingers…It is so bittersweet to look at the pictures and videos because they make me so happy to be able to see her again.  Yet after I see the pics and videos, I get very sad because they are only pics and videos.

They aren’t her.  I want her.

 

I have my moments during the days where I catch myself daydreaming about Hannah, depression moments wishing she was still here, or even just a smile on my face when I see a picture or something.  Even though I still feel lost and loss in my life, I don’t spend my days dwelling in grief.

The nights are where I have more problems.  Before Hannah passed and when my sleep schedule was so crazy, I would use melatonin to fall asleep after my ‘night shifts.’   However, after she passed, melatonin didn’t seem to work anymore, so I started taking over-the-counter sleeping aids, which still take a couple of hours to kick in.

It is hard to admit this, but every night when its quiet and I try to go to sleep, I have Hannah on my mind.  Whether it starts with a good memory or how I am missing her and wishing she was back, for some reason I always end up thinking about that last night she was with us.  Those last few hours.  Those last few moments.  And the aftermath that night after she passed.

To say that this experience is ‘haunting’ me is a harsh term to use.  I mean, let’s face it.  To say Hannah passed away “peacefully” is really not a totally factual statement.  Because the hours before, during, and the hours after were a nightmare for me.

I have a problem because I keep replaying the entire night in my head.   Replaying the important comments that were said by various people that night.  Replaying how Hannah looked at various times of the evening as her body was finally shutting down.  Replaying everything that happened once she passed away and the agonizing experience after the hospice people came to pick Hannah up.

Hardest of all, is replaying her last few moments…her look, her eyes, her hands, her smell, and her hair…the last moments she was Hannah.   And then realizing Hannah was gone, as I still held her in my arms.   I just can’t get them out of my mind.

Just thinking about it now is bringing tears to my eyes.  But the thing is, there is nothing that I would have or could have done different to have changed the outcome.  I have no regrets about how we handled Hannah’s condition once we realized that we were going to lose her back in mid-October.    There is nothing that I would have changed about that last night she was with is…having my husband, my kids, our favorite nurse, and my inlaw family there was the best possible group to be there, loving on her until she was gone.

Yet when I am alone in my thoughts at night, I still can’t help to think if there was something I missed, something I should have seen a few months earlier that could have given us something to give her more time with us.   Was there something differently I should have done that night she passed?

During the day, in my sane mind, I do feel we did the best we could with what we had available.  It is the nighttime when I am tired but my mind is still cranking that these thoughts come.  So I take the over-the-counter sleep stuff so I can fall asleep because otherwise I would be thinking all night long, and I know it is not healthy.

But another problem is the thoughts don’t always leave when I fall asleep.  I have had a number of dreams about various situations that I know if were deciphered by a dream therapist would all come back to dealing with Hannah’s loss and the other losses that have occurred recently for me.

Maybe that is why I love looking at pictures and videos of her.  Seeing her smile, her laugh, her absolute love … it gives me a chance to remember the good times because there were a LOT of good times up until a few months ago.

I hope that in time, these other thoughts will start to diminish.    They will, right?