Hannah won the pool…twice!

We went to a superbowl party at a friend’s house today.  It was great to get out and socialize again, and Ethan and Abby had such a good time with the other kids.

They had a betting pool for the game with 100 squares.   After everyone chose their squares, there were only 7 left that were blank.   They decided those squares would be given to Hannah, specifically for our Little Miss Hannah Foundation.   There was a winner after each quarter.

Hannah won not only the third quarter pool but she won for the final score as well!   What are the odds?   Only 7 squares out of 100, and she won two for two of them!!

Because of her, we are going to be ordering LMHF business cards sooner than later.   One step closer, baby girl!

Maybe Hannah was up there messing around with Tom Brady and the Patriots in those last minutes because she knew she was currently winning the pool?     There has to be some explanation, right?

Make-A-Wish, we are eternally grateful!

Anyone who knows us knows that our Make-A-Wish to Disney World last April was the best time of our family’s life with Hannah.   I’m disappointed that I never had the chance to really blog about it, but I am so glad that we have over 800 pictures from the trip.

It was Disney World.  It was Mickey and Minnie Mouse.  Hannah’s absolute favorite characters are Mickey and Minnie. It was being able to stay at Give Kids the World.  They made all three kids feel like the most important kids on earth.   It gave us time to just have fun and be a family.  We had very few worries and were able to just relax (with the exception of Hannah overheating and needing a first-aid break one day).  It brought some very special people into our lives.

It all began with meeting our wish granters back in early March last year.   We have kept in touch with two of our three coordinators over the year.

Today, the 2nd month anniversary of Hannah’s passing, was the annual Make-A-Wish run here in Las Vegas.   One of our wish granters whom we became friends with told me that she was going to participating in the run and asked if she could put Hannah on her shirt, specifically one with her in her Minnie Mouse costume.

I was so touched, incredibly touched.   Even though we weren’t able to do the run this year (Ethan and my mother-in-law did it last year), Hannah was still there.   Running in and on the heart of someone who volunteers to help change children’s lives by granting their wish.

Hannah, who had already lost almost all of her fine motor skills, worked so incredibly hard to reach out and touch Mickey Mouse. She was so excited to see him. I cried right there in front of everyone when I saw that, and I'm so thankful the Disney Photopass photographer captured the moment perfectly. Look how happy she is!!

Next year, we are going to do the run as a family, and we are going to create our own team – the Little Miss Hannah team.

It is so hard to explain to people HOW much this trip meant to me.   It was one of the last times we had pure joy with Hannah before her condition really started to deteriorate.  I was naive at the time, but looking at pictures of Hannah soon after the trip, I see it now.

But most importantly, it gave all of us, especially Ethan and Abigail, memories that we could not have ever provided.   Memories of nothing but fun with Hannah and amazing opportunities, I mean, the kids were treated like royalty and still talk about it to this day!

When we made the decision to place Hannah in hospice, after the meeting with the social worker to break the news to them that we were bringing Hannah home to … well, you know… the social worker asked the kids to stay with her while Daddy and I took a walk.   She had each of them draw a picture of something they think about that reminds them of the good times with Hannah.

They weren’t sitting near each other nor did they talk about it beforehand.   But both of them drew a picture about the Make-A-Wish trip.  I still have those pictures they drew and colored in Hannah’s memory box.

Thank you, Make a Wish of Southern Nevada.  You gave us a tremendous gift.   Not just the gift of an amazing trip, but the gift of priceless memories to last us our lifetime.

Wordless Wednesday

It all fits into a box

It is done.    All of the clothes of Hannah’s I want to keep fit snuggly in a Christmas storage tub.  For now, anyway.   Eventually, I will get a hope chest for her clothes, but this will do for now.

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.

 

Hannah’s fight against childhood rare disease

Please "click" to find out how you can take action and help children still fighting!

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.

It’s just friggin’ fabric!!

It has been a really rough couple of days.

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.