I have a dream

With Ethan and Abigail having fun in California and Hannah at home with her nurse today, Daddy and I took some much-needed quiet time together and went out for lunch.   It has been very rare that we get to spend time, just the two of us, these days.

During lunch, we fantasized about what we both would like to be doing right now with our lives.  With him still being unemployed (even though he has sent out over 200 resumes) and my part-time job contract over, we are both trying not to dwell on how desperate our financial situation has become these days.

You know what I really want to do?  I mean, truly, deep down, if I did not have to worry about an income type of job?

I want to create the Little Miss Hannah Foundation.   There would be two purposes for this foundation.

• One is to help raise money, fund research, and create awareness on a larger scale for neuronopathic Gaucher’s Disease and it’s closely related disease cousins such as Niemann Pick, Battan Disease, Krabbe Disease, and Tay-Sachs Disease.  I am so impressed with what Chris Hempel and the other families in the SOAR-NPC group have done for Niemann Pick type C, and I want to be able to have the time and resources to do that, truly make a difference in the lives of our nGD kids like Hannah.   I want to be able to work with groups like the Children’s Gaucher Research Fund and National Gaucher Foundation as well as the other related-disease foundations.
• Second is to create an outlet for other families of children of rare diseases to have someone to reach out to on a personal level, to help guide them to finding the right information on their disease, help them search out experts and foundations that can help them, help them get awareness for their disease community, and just have a true contact where parents can reach out to a real person, one-on-one contact, to help them during these times.   I want to be able to work with the Children’s Rare Disease Network, NORD, and other rare disease organizations to really get involved in the politics and legislation of children’s rare disease research.

I want to be able to make a difference.  My heart is there.  I have spent many, many hours over the last two years trying to figure out how to do something like this.  Before Daddy lost his job, we had no respite help so there was little time for me to be able to do anything other than take care of Hannah and be a present mom to Ethan and Abigail.

I have an intense amount of guilt that I don’t spend anywhere near as much time as I used to researching, talking to other disease communities and foundations, and really trying to get media awareness.   It was a hard admission realizing that the line I had to take in order to give Ethan and Abigail, especially Abigail, the attention that they needed because of Hannah’s constant special needs was much shorter than I had wished.

But now that we have nursing for Hannah, the kids are in a much better place mentally (especially since we live near family), my drive to get back into working with others on finding a treatment for Hannah and working with other parents of rare diseases who may not know where to start is HUGE.  But now, lack of income is the obstacle.  You can’t earn an income from volunteering and having a foundation.   And without an income, we can’t survive as a family.

I’ve been studying for the past month or so to get back into website design, something I do enjoy doing.  But there is not a guaranteed income here either, but it is something that I know I have a talent for and hope to be able to make an income in a few months doing.

But my dream job, my “calling” if you will, is to make a difference in the childhood rare disease community.  In my heart, I know this is something I could do well and really make a difference in someone’s life doing.  I have such big ideas, big plans for my Little Miss Hannah Foundation.   Those of you that know me well know that if I have my mind on something, I will find a way to get it done.   I have quite a few friends and acquaintances who have many talents, in marketing, researching, etc., that I know would be able to count on for advice, help, or counsel once I get started.

For now, it is just a fantasy that I have to tuck away every day and concentrate on “real life.”

Someday…I hope…