My attitude is changing

Hannah, 3 months old - always smiling!

I never realized how much of an impact the NIH trip had on me until recently.  

I went from feeling like her condition was so serious that we would only have a few months left with her (type 2-ish) to feeling like maybe this disease isn’t progressing as fast as I had originally feared.  Maybe, just maybe, we would have a couple or even a few years with her instead of a few months.   Maybe being so unique, not fitting the “classic acute or chronic neuronopathic Gaucher disease” child (from the NIH report) will give us more time than the average child who presents with symptoms of nGD at birth.

Last week, I was waiting with Ethan and Abigail at the bus stop in the morning.  I remember thinking to myself, “I wonder if Hannah is ever going to be able to ride the bus, or will we have to do a car-rider for her because of her disabilities.”   Walking back to the house after they got on the bus, I realized how HUGE this was in terms of my change in attitude towards her prognosis.

There have been so many times that I have not even let myself think of Hannah being here to go to Kindergarten and going to the same neighborhood school that her big brother and sister are going to now.   It would always stab at my heart because, then, I just felt she wouldn’t make it a few years, let alone a few months.

But I realize now that I am planning for Hannah’s future, albeit a few years not a lifetime.  I’m slowly trying to wean her away from needing me every single second, and I am slowly trying to help her gain more independence.  Well, as much as I feel comfortable with (which is still probably nowhere near I did when Abby and Ethan were this age).  She still needs me for so many things that a on-track 13-month-old wouldn’t need.

But I am planning for her to get to Kindergarten.  Somehow.  I have hope now.  Real hope.