Hannah is sleeping peacefully right now.  The combination of Valium-Methadone-Klonopin-Baclofen-Tegretol and chloral hydrate when needed is starting to work to keep her comfortable.  We are down to using the chloral just a few times a day now instead of every 4 hours on the dot.   We may need to up her valium a bit because it is wearing off before the 6 hours are up, but at least that is something that is doable.

I love the way her face looks when she is sleeping.  So sweet, so angelic.  During the night, I spend hours just laying next to her caressing her face and body, combing my fingers through her gorgeous hair.

I think of just how amazing she is and how much beauty and happiness she has brought into my life.   How much she has opened my eyes to some wonderful feelings, insights into life, and how many thousands of times she has warmed my heart and made me smile.

She is the missing piece I didn’t realize I needed to complete our family and makes me understand what pure love is.

One of my biggest fears has always been that, in time, Hannah will be forgotten.   I know that Daddy, Ethan, Abby, and I will never forget her, but that others in our lives will.  Family  members you don’t see that often, friends you chat with every once in a great while…those that really never got to know Hannah personally.  I don’t want them ever to forget her and how important my little daughter is to me and our family.

I think because of Hannah, I have found what I want to do with the rest of my life.  She has thrown me into this world of rare disease, advocating families, special needs, etc.   Through all of this, I know what I am meant to do.

So these past few weeks, Daddy and I have started to put together the paperwork for our Little Miss Hannah Foundation.  Yes, we are finally going to do it (many of you know we have been talking about it for almost two years).   I have been working on our mission and our general focus which, in summary, is working with directly with families affected by childhood life-limiting rare diseases by providing one-on-one support and guidance, local support groups, as well as a strong emphasis on sibling support and attention services (of which are horribly lacking).

We are so fortunately that Dr. Bernstein’s office manager (who was instrumental in putting together an amazing World Rare Disease Day event in their office this year) is willing to help guide us with the paperwork so we can get our 501c3 nonprofit status.   I have also had the support of some wonderful and talented friends who have offered to help as well.

This also works with my personal plan so when I finish my Masters in Professional Counseling that I could focus on using my experiences towards being a medical family therapist here in town.   When I started my masters earlier this year, I didn’t know what exactly I wanted to do with the degree (which at the time was the generic healthcare administration), but I know I wanted to stay in the medical world.

But this recent turn of events this month really opened my eyes as to what I want…what I need to be doing with my life, and this has given Daddy and I something to focus on these past months instead of just wallowing in our sadness.

I want the world to know that I have a beautiful little girl named Hannah.  She is an amazing fighter, a charming and sweet soul, and she means more than the world to me.  I want the world to know how special she is…I would scream it from the rooftops if I could.

I don’t want her ever to be forgotten…not for a second.   With this legacy we are creating for her, I hope she never will…and that her sweet face will be forever in the minds of our family and friends today and those families we meet in the future.

Hannah deserves it.

Last month, I shared my idea for creating awareness here in Vegas for World Rare Disease Day.   It was to have Ethan and Abigail’s school to wear jeans on 2/28 in recognition for Jeans for Genes day.

I asked a friend for help on how to begin this, and with her help, it has become bigger and more exciting than I could have ever hoped for!

Not only has the principal agreed to let us send out a flyer encouraging the students and staff to wear jeans on 2/25 (school is closed 2/28), but they are going to allow the entire 3rd, 4th, and 5th grade students to create bracelets for the Children’s Rare Disease Network’s 7000-bracelet project!   Can you picture 350 or so elementary students creating bracelets to share their hope for children like Hannah who have been diagnosed with rare diseases?

What is even more exciting is that the Las Vegas Bead Society has offered to volunteer their time and help getting us the beads and bracelet supplies for this event as well as offering volunteers to be in the classrooms to help make the bracelets.

The only ‘not sure’ we have right now is whether or not the school principal will allow media coverage for this exciting day.  I’m keeping my fingers crossed that she will, as it will tie in great with another event that I have in the works (will share later!).   But even if she feels it is not a good idea (students come first), just the fact that she is willing to open up the school to help create this kind of awareness for childhood rare diseases is more than I could have ever hoped for.

Next step is to get a flyer to the principal for approval.  Then we will know exactly how to plan out this event!