What do I say now?  I’m sitting here watching the cursor flash waiting for something to be typed.

I’m at a loss for words.

I’m in the living room right now.  Sitting in the same place I have sat for dozens and dozens of nights, just 10 feet away from the bed that Hannah would sleep in while I would be doing my night nursing.   The house is silent, dark while the kids and Daddy still sleep.   My body doesn’t quite know what to do sleep wise yet.

The room is completely quiet.  There is no trach humidifier going, no oxygen pumping.   It just feels so surreal not having the TV or lights on in this room ~ They have been on nonstop for months.   I miss the sounds of Hannah breathing while I sit here.

Just too quiet.

A lot of friends and family have asked me, “how are you holding up?”   The honest response to that answer would really vary from one hour to the next.  I’ve had moments of completely emotional breakdown, periods of numbness as if everything is okay.  A lot of feelings of guilt, most after the periods of numbness.   I am much better at remaining composed when I’m around Ethan and Abby and others than I am when I am by myself.

I’m not going to share much about the details of Hannah’s passing.  Those hours are something that I need to keep safe in my heart and in the heart of those that were here that night.  It was a very, very difficult and emotionally exhausting experience.

I am so thankful that I was the one holding her when she took her lasts breaths.  Even though I had made comments during the weeks prior that I just wanted someone who cared about her to be holding her when it happened, it would have killed me if it was anyone else or if she was sleeping alone when it happened. I had to say that because we still had to live our lives because of our other two kids.

But during the last 4 days or so, I rarely left the house.  I forced myself to run errands with Abby that Friday afternoon just get time to clear my head.  But after we got back, I didn’t leave the house for anything.  Ethan and Abby had their last games of the season on Saturday, and I just couldn’t leave.  I didn’t want to be away from Hannah just in case.

But Hannah was cuddled tight in my arms when she finally let go, with my fingers running through her hair, caressing her fingers and face.  It is where I needed her to be.  I selfishly wanted to be the last person she felt when she let go.

I will forever be grateful for her giving me that one last gift.

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…

I thought today was going to be a pretty easy-going day.  Hannah had her Cerezyme treatment downtown, and it went uneventfully and on time.  For the first time ever, Hannah stayed awake during the entire 2-hour-plus infusion.  Abigail went to work with Daddy for an hour or so, and she thought it was the best time of her life. 

Then, I got home and heard some horrible news.  One of our pediatrician’s nurses, one of our favorite nurses, Daredeth, was killed in a car accident this past weekend.  My heart sank when I heard the news, and I haven’t been able to get it out of my mind all afternoon and evening.

We knew her before Hannah was born, but we really didn’t connect with her until Hannah.  Probably because we went from seeing the pediatrician once every few months to seeing him a few times a month for the past year because of Hannah.  She LOVED Hannah.  Every time we had a morning appointment (which was most often), she would make sure she got to give Hannah a hug (she didn’t hug in the afternoon because she felt she was exposed to too many illnesses by then).  She was the one that always helped Dr. B. set up appointments for procedures, get all the kids their meds, and the one who went out of her way to make sure we got whatever we needed. 

She was a wonderful, wonderful woman.  I just talked to her less than a week ago too.   I just can’t believe she is gone. 

Our pediatrician’s office is so tight-knit, they are like a family.  I can’t imagine what they are going through.  I keep thinking about Dr. B., Daredeth was his right arm.  My heart is just breaking for all of them.

If they open the funeral to the public, I want to go if we can.   I just feel like I need to give her the “thanks for truly caring about my kids” that I never really gave her in person.  You know, you say “thank you” while yo uare with them, but it is never a truly deep “thank you.”  I don’t know if that makes any sense or not.