Little Miss Hannah Foundation website

I have spent a lot of time during the past few weeks on the new Little Miss Hannah Foundation website.   Talk about a labor of love!

The hardest part for me was writing Hannah’s story.

I want everyone who wants to learn about the LMHF to learn about who Hannah was, why she was so special, and how she was able to steal my heart completely.

It was so hard for me to “summarize” Hannah’s life into one page.   It was emotionally difficult enough having to write it all down in the first place, but then I had to edit and cut out parts of her story that were so important to our family, to me.

Her life was so much more than just the one page that I was limited to.   She is worth so much more than one page.  But reality is, if someone wants to learn about Hannah, they aren’t going to want to read an entire book.   (Insert my friends saying, “Hey you should write another book!”).

I like talking about Hannah.  I like hearing her name being said.   Rephrase that, I LOVE hearing her name being said.   It is one of the only connection that I have left to remind me that Hannah is not being forgotten.

Read Hannah’s Story.

I didn’t intend to do it, especially after the tailspin it threw me into just a couple of days before.   But Daddy wanted to clean out our master closet so we can actually use it the right way, since half of it was holding all of our linens because the linen closet was holding all of Hannah’s clothes and medical supplies.

Daddy offered to take all of Hannah’s clothes, box them, and put them in the garage for when I was ready to go through them.

But the idea of that really bothered me.  My insane brain didn’t want the clothes that I felt connections with to end up in the garage.

So I did it.   Three bags went to donation, one bag is going to my little nieces, and one storage tub full of Hannah memories safely tucked in my master closet with her memory box of keepsake items, cards, and items with special memories of Hannah.

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Today is the World Rare Disease Day blog-hop, 30 days before World Rare Disease Day on February 29th.   Dozen of rare disease bloggers across the world are coming together to share our personal stories of how childhood rare disease has affected our lives.  (Please check out their stories below)

If you take a look at the statistics about childhood rare disease, the numbers are mind boggling.   The ones that hit home for me were these.

• There are only about 50 children in the U.S. (few hundred world wide) with her form of Gaucher’s Disease, that is it!   Extremely rare even by rare standards, which is a disease affecting less than 200,000 people.
• 30% of children with a rare disease will die by their 5th birthday.     Hannah was 3.
• 75% of the 7000 rare diseases affect children.   Hannah.
• Almost 80% of rare diseases are genetic in origin.   Neuronopathic Gaucher’s Disease, Hannah.

When Hannah was first diagnosed at 5 months old, there was so very little about nGD out there.   It was like finding needles in a haystack just to find any information we could sink our teeth into.   But there was something about Hannah that made her family and I just want to fight like crazy for her.   We wanted the people who could help her the most, the researchers and specialists, to be reminded of the faces behind this horribly rare disease.   In our drive for awareness and answers, Hannah became one of the poster children for life-limiting rare diseases.

As I promised Hannah at her funeral service last month, ”Because of you, other families will be empowered to fight for their children.   Because of you, doctors will have more compassion and resources when working with children with rare diseases.  Because of you, communities will come together for reasons they never did before. ”

We are going to continue to fulfill this promise to her by actively helping other families with young child diagnosed with life-limiting rare diseases in Hannah’s name with our Little Miss Hannah Foundation at http://www.littlemisshannah.org.

It is amazing what one little girl has accomplished in the fight for rare disease awareness in her short life.   To my Hannah:  ”One of your biggest gifts, one of the reasons I believe that we were blessed to have you as our daughter, is the awe-inspiring changes you have made in the world.   What you have done in three short years, most people, including myself, could never do in a lifetime.  You have opened so many peoples eyes, from physicians to friends to strangers, and shown how important it is to fight for children like you, ones for whom today’s medical advances do not have a chance to save.”

The more people who learn about these specific childhood rare diseases, the more they will come to love these children affected by and realize that they desperately need more people fighting for them.   There are very few rare diseases with celebrity spokespeople, millions of dollars in foundations, or rare diseases that are a household name where anyone would know what they are.

Before Hannah, thousands never even heard of Gaucher’s disease or have ever met and fallen in love with a child who would lose their life to a rare disease.

But because Hannah was here, because she fought so hard, all those people that loved her will continue to fight against life-limiting childhood rare diseases in her memory.

I love you, my little miss Hannah.   The world is forever changed because of you.

Well, it hasn’t been like an all day thing, but I have had my moments of major breakdowns.   I mean, be pissy at everyone, crawl into bed, and just bawl breakdowns.

It started Thursday when I made the decision that I was finally strong enough to go through Hannah’s piles of clothes in the closet.   A wonderful woman has offered to create a quilt out of my favorite outfits, but I just can’t seem to bring myself to go through them all.

I got so far as to pulling out one stack of clothes and putting them on the couch.  Then, I just stood there looking at them.  I felt my chest tighten and then the tears started.  Out of nowhere, I just didn’t expect it to happen!  I grabbed the clothes and threw them back onto the shelf in the closet they came out of and closed the closet door.

Why is it so hard to go through her clothes?    I have been able to go through everything of hers and all that is left are her stuffed animals (already gone through first round), some toys (already donated most), and all her clothes.

And then today.   I just felt incredibly mopey all day long.   There were moments I was more, I guess, upbeat when I went grocery shopping with Daddy and had good conversations with a few people about helping out with our Little Miss Hannah Foundation.

I always put on a strong, brave face when talking about Hannah with friends or with people regarding the foundation because it is just an easier conversation if I try and distance myself a bit.   It is just much easier.

But then after the last phone call today, we had dinner.   I was so not in the mood for conversation with Daddy and the kids.   Then after dinner, it seemed like everything the kids did just got on my last nerve, and I just was ready to go ballistic.  In hindsight, it wasn’t really their fault, nothing out of the ordinary.  But at the time, my head started pounding and I was really going to explode.

Instead, I left them all in the family room to go to my bedroom, crawled into bed under the covers, and I just lost it.   The tears just flowed, and this time I just let them.  Seeing her clothes, even for those few moments, was just so overwhelming.  It brought up to the surface how much I miss my baby girl.  I mean, incredibly, heart hurting, heavy chest breathing, missing.

I would give anything for just a few more moments with her.  Anything.

Anything.

The clothes are going to have to wait…I just can’t deal with it right now.

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.

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.

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.

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!

Newly found pic of Hannah, 12 months old

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.