We have known for a few months now that our 8-month-old Hannah has this neurodegenerative brain disease that was likely going to take her away from us in a few years. We know what the symptoms are, we know the process it is going to take…we know all of that. We know she is considered “special needs.”
For whatever reason, it never really hit me that I had a truly “special needs” child until a few days ago.
We know that Hannah has “abnormal eye movements” with her supranuclear gaze palsy and lack of saccadic eye movements (ability to follow rapid eye movements). Not even going to bi-weekly IV enzyme replacement therapy, multiple doctor visits, and many procedures really made a dent in my brain about this for whatever reason. Denial? Probably.
But a few days ago, I really got to experience how the “lack of ability” (I’m not comfortable with “disability” yet) really affects her.
We bought this toy a couple of weeks ago. Basically, the three animals go down the curling slide with music. We thought it would be a fun toy because she loves placing things on other things.
However, we realized that when we put the toy on the top and let it go down the slide, her eyes stay stuck at the top, and she can’t watch the toy go down the slide because it is too fast for her. If we do it by hand, very slowly, she will watch it go down. But if we just let it go down by itself from the top, she can’t follow it.
How many things is she going to miss out on because she can’t follow something? There are so many things that move faster than slower in life. Watching or playing sports, so many different toys where things “fall down”, even playing rolling the ball when she is a bit older.
Don’t know why it took this long to hit, but now I am beginning to see how this disease is going to affect her brain. This is just the beginning, and I have to accept the fact that it will never get better, only worse. Sucks. Really sucks.
You can read more about our fight for Hannah’s life at LittleMissHannah.com (my nickname for her!)