If only Selena Gomez met Hannah

Over the past week, there have been a LOT of search requests coming to my blog looking for a combination of the following keywords:  Hannah with the rare disease that met Selena Gomez.    At least a hundred or so in the past week.

Apparently there is a teenager named Hana who also has a rare disease, Progeria, that met Selena Gomez last month.    The amount of exposure to the disease Progeria, the one where children age rapidly, that was raised by this one visit must be staggering.

Progeria is one of those rare diseases that are actually known to a good number of people because of its unique physical appearance and the fascination of how the disease process affects the human body.   It is amazing how a disease that has only about 80 known cases in the world (according to Wikipedia) has gained so much attention in documentaries, celebrity visits, etc.

Gaucher’s Disease, well, doesn’t have a unique physical appearance so unless you knew the child had Gaucher’s, the most you would notice is that the child’s eyes may be crossed (strabismus) as well as some physical and/or developmental differences.   Nothing so striking that you would be able to see a Gaucher’s 2/3 child and say, “Hey, that child must have Gaucher’s Disease.”

Maybe it has happened, but I have never heard of a story where a celebrity made an appearance with a child with Gaucher’s Disease.   Can you imagine how much awareness could be brought to neuronopathic Gaucher’s disease by a single visit like this?    There are a few hundred children living in the world right now with nGD, at least a few dozen here in the U.S.

It really just takes one amazing, heartwarming and well-intentioned visit from a celebrity, like the one Selena Gomez made a couple of months ago, to bring about public awareness to rare diseases, especially those rare diseases that take the lives of our children so cruelly like Gaucher’s, Neimann Pick type C, Krabbes Disease, Battan’s Disease, Tay-Sachs, etc.

Hopefully with the momentum that World Rare Disease Day is bringing each year (this year February 29), there will be those few celebrities who might come across a fan diagnosed with one of these fatal rare diseases and reach out to them.   The amount of awareness that could be created by just those couple of hours or so could make such a difference in how the public perceives these diseases.  Having recognition of these diseases like Gaucher’s by the world outside of those of us affected by them could really lead to changes in support and lead to enough funding to find a treatment!

Those of us in the fatal, childhood rare disease community really have our work cut out for us.   But even though I can no longer fight to save my Hannah’s life, I will never give up the fight for awareness for Gaucher’s Disease and other diseases that take the lives of our children.

Ironically, Selena Gomez is Abby’s number one, all-time favorite celebrity.  My Hannah may not have appreciated the visit with Selena Gomez even if it had happened, but Abby would have been in heaven being able to meet her!!

“Time to Move on”

I went to the parents bereavement support group tonight, and one of the topics that was brought up for discussion is outside people saying things like “it is time to move on now” or “you need to move on.”  As if the death of a child is just something you “do,” like changing jobs or moving to a new state.

You just don’t say “Okay, that is over now so I will start fresh” when you lose your baby.

I HATE those phrases, with a passion.

I have even heard it in my own situation with Hannah.   As if Hannah was just a “phase” in my life, and now it is time to “move on.”   Perhaps it wasn’t meant to be mean sounding, but hearing something like this stings my heart.

From a parent’s bereavement website:
Don’t let anyone tell you how to feel, and don’t tell yourself how to feel either. Your grief is your own, and no one else can tell you when it’s time to “move on” or “get over it.” Let yourself feel whatever you feel without embarrassment or judgment. It’s okay to be angry, to yell at the heavens, to cry or not to cry. It’s also okay to laugh, to find moments of joy, and to let go when you’re ready.

I guess I’m in my “anger” phase right at this moment.   I’m angry that Hannah is gone.  I’m angry that I don’t have Hannah right next to me, cuddling in my arms.  I’m angry that some people think I should just “get over it” and “move on” as if it is so easy to just turn off my feelings and close “that” chapter of my life.  I’m angry about things that I can’t even post about but I know I am justified to be angry about.

Even though I feel I am handling things pretty well since Hannah passed away just two months ago, I know I am still grieving.  I am still feeling lost in what my role is supposed to be now that I am not doing my favorite job in the world, being Hannah’s primary caretaker and lovey.    Sometimes I feel like I am not grieving enough for her, and I feel guilty for that.   It is all confusing, but I know that in time I will work it out.

But don’t tell someone who is grieving the loss of their baby that it is “time to move on” and “get over it.”

For me, I will never “get over it.”  I will learn to adjust to my life without my daughter, and I will learn how to be able to have fun with Ethan and Abby at activities I know Hannah would have liked.   I will learn how to cope with the birthdays and holidays I won’t be able to celebrate with Hannah, and I will learn how to cope with the anniversary of her death.

But I will never “move on” from my life when Hannah was alive.   Even with all its complications because of her medical condition, my life with my three children was truly a WONDERFUL life.

I will just learn how to move through life differently but I will always, ALWAYS, carry Hannah with me in my heart.  She will always influence the actions I take in my life.   I know that I will think about her every single day of my life, and if I miss a day or two, I know that will be okay.    I know that it will not be smooth sailing and there will be rocky periods, but I also know that in time the waves will become less rocky and I will be able to enjoy the water again and learn how to maneuver when the waves come.

I can also admit that I’m still in really rocky waters right now.   I’m so thankful for Hannah’s foundation to be able to focus some of my grief towards something positive, something that will keep Hannah alive in people’s hearts even if she can’t be here with me, cuddling my heart.

But if there is anything that I can enlighten the world with it is just let people grieve on their own time frame when they lost a child.  Never, ever mention that it is “time to move on” or “get over it.”    Just don’t.   Unless you walk in our shoes, you have no clue whatsoever.   Really, no clue.

I’m just thankful that the overwhelming majority of people in my life understand this.  But as always, it is just those few bad apples that leave a sour taste in your mouth that makes your stomach sick and your heart ache.

Yep, I would classify this as the “anger” stage that I am feeling right now.

Impossible to sum up

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.

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.

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.

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