“Official” is a great feeling

20 Mar by Carrie

Our "official" incorporation filing

The Little Miss Hannah Foundation is officially in business.

I can’t tell you how AMAZING this feels.  Hannah’s legacy is real.  It is tangible.  It is “in the books.”

We have done SO much work on the setup of our organization, and there is still so much more to be done before we can start serving families.  We have our second board meeting tomorrow night, and I’m so proud to have such a great group of friends and family here in Vegas who believe in what we want to do.  People who want to be involved, want to help, and most of all, people who want to see us succeed.

The next steps include obtaining our 501c3 status, our tax-exempt status.  My uncle and his law firm have agreed to do this incredibly complicated (for us) paperwork for us pro bono.  Pro bono!  My husband and I started doing it on our own, and it was so confusing and overwhelming!   I feel so blessed that his firm also believes in our mission and what we want to accomplish.

This is validation.  Validation that no matter how hard it gets or how much I miss her that her short time here with us had a bigger purpose.  She will always be “my baby.”  But by working with other families who are living the life we did when Hannah was with us, maybe we can provide some comfort where there was none if Hannah wasn’t who she was.

I’m so proud of you little girl.  I’m proud to be able to share your story and talk about you every day, many times a day.  I’m proud that you have taught me so much and that I LISTENED to your lessons.   I’m proud that people who were are now strangers to us will soon be endeared to you.

I’m proud to be your mom.

I love you baby girl.

~ Filed Under: LMH Foundation

Perchance to Dream…

16 Mar by Carrie

Such an amazing smile

I belong to this grieving mothers board, and there was a topic about moms who have had dreams about their children they have lost.   So many moms have had dreams where they felt their child was visiting them or in the dream their child was alive.

Where can I get these dreams?

I have had only two dreams with Hannah in them since she passed.  I can’t even call them dreams, as they were really nightmares.  The first one happened the day after Hannah passed away, and I woke up completely panicked by it.   I can still recall the details of this nightmare so vividly…it was such a simple happening but terrifying.  One of those dreams that I knew what it meant.

The other nightmare was a week after that.  I don’t remember much about it anymore, but I know it was during that time after she had passed away and before they hospice transport came to pick her up.

Since then, nothing.  I have always had some crazy and funky dreams.   You would think I would be ripe for these type of dreams.

I want so badly to have a dream with Hannah in it.  I want to have one of those warm and comforting dreams where I get to spend some more time with her, even if it is just in the dream.  Just to see that smile of hers.  That intoxicating, heartwarming, and bright smile.

Just one dream with her in it, being happy.  That’s all I want.

 

~ Filed Under: Surviving

Price of Freedom

12 Mar by Carrie

We have had a crazy nonstop weekend.  Started first thing Friday and didn’t stop until about 10 pm last night when we got home and rushed the kids off to bed for school.  It was all good things.  Parties, shows, friends, etc.

Even made two trips to the cemetery to visit Hannah to redecorate her area.  Out with the Valentine’s stuff, in with Spring.

And then last night after everyone went to sleep, I just broke down.

Guilt.  So much guilt.   Guilt because we would have never been able to have such a fast-paced weekend with Hannah’s needs.  Guilt because her life supporting medical equipment doesn’t restrain our activities anymore.

Guilt because it was an easy and jam-packed weekend.

I don’t feel guilty because it was fun.  I feel guilty because I know it wouldn’t have happened if things were different.  And then the guilt turns to sadness because in my heart I would gladly give up these fun, pick-up-and-go days, just to be home with her.

I didn’t like the lifestyle that Gaucher’s disease caused us to live in, especially her last year.  But I LOVED my life with Hannah to that last minute I got to hold her when she passed away.  I would gladly take back that lifestyle just to have her back in my life.

Then it hit me last night.  The price of freedom from that medically-constrained life was having to lose Hannah.

Can I turn this freedom in for a refund and get my Hannah back?!

~ Filed Under: Surviving

If only Selena Gomez met Hannah

11 Mar by Carrie

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 Hwang 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 Hana Hwang, 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!!

~ Filed Under: Rare Disease

Hannah is playing

10 Mar by Carrie

Someone once told me that the children in Heaven play on these streaks because it is one of their only connections to our world.

“Hannah is out playing”. When Abby and I see the streaks coming from the fighter planes, we always think that Hannah is out playing. When there is more than one plane out there, Abby will say “Hannah is out playing with her friends.”

Thank goodness we live near an Air Force base. Gives us a chance to look to Heaven often ♥



~ Filed Under: Surviving

Brand New World

9 Mar by Carrie

If you had told me four years ago that I would be knee deep in a world where children fight like warriors, parents fight like superheroes, and where my heart and passion would be on the front lines with these families and the amazing medical teams and organizations that help families fight and survive…I would have thought you were crazy.

Four and a half years ago, I was a work-at-home mom doing medical transcription (ironic, I know) and I had just enrolled in the last class I needed to become a credentialed teacher in Texas.   I remember telling people that life was “content.”   Great neighbors, great school for Ethan and Abby.  Hardly Norman Rockwell, but nothing major was going on in our lives.

But I wasn’t truly just happy.  Something was missing.  Daddy and I would often think of organizations to get involved with because we wanted to do something meaningful.   But it felt like picking a name blindly off a list as to where we wanted to help.  Nothing specific called out to us.

Fast forward to today.

I won’t say I’m happy.  I’m not content.  I’m not.  Far from it.   But there is something that I have now that I didn’t have before.  PASSION.   There is a fire inside of both my husband and I that we didn’t have before.  It goes way beyond just “wanting to be involved” like we did four years ago.

It is an intense need to make sure changes are made in a system that, we feel, is currently flawed.   It is an internal drive in our hearts that encourages us to go out there and help those who really deserve to be cared after.   I can honestly say I never, ever felt this way before in my life.

Thank you, Hannah.  Just another one of the many important gifts you have given me.

I love you, baby girl.   I miss you.

~ Filed Under: Surviving
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