Smiles

It is hard to believe that it is September already. We have all enjoyed the relaxed schedule of summer, and I am not looking forward to getting back on the school schedule! I am always a little sad to see the summer end -- at least until I remember how nice it is to have some kid-free time each morning.

Our daughter just turned 9 years old. (Read more about her in and Sanfilippo Syndrome (the genetic disease she has) is a progressive disease so another year older isn't always a good thing. It has seemed at times that she is less connected, and yet she often responds with big smiles and laughter when Dylan (my son), Matt (my husband) or I get right in her face. Maybe we have to get a little closer than we used to, or talk to her a little louder than we used to, but she shows pure joy when she knows we are around.

I can't imagine losing this.  I know children who are further along on the Sanfilippo path, and I see their loss of recognition. I see them smile less. I can't even imagine losing my daughter's fabulous grin and silly giggles. I know it will happen one day, but I don't think about it. And I do a pretty good job making it day-to-day -- happy to have her smiles light up my day.

Sometimes, though, it's impossible to keep that prognosis out of the front of my mind. Yesterday, news swept through the Sanfilippo community of a sweet 9-year-old girl who passed peacefully in her sleep the night before. I did not know the child or her family, but my heart sank for them. I figured she must have had some kind of underlying condition and must have been declining for some time.  When a friend told me that wasn't the case, it was terrifying. I have an expectation in my head that helps me get through Sanfilippo and this just does not fit!

It has been a rough year in our Sanfilippo community. A lot of children have passed. Some declined slowly, as you would expect, and the end could be seen as a release from the final stages of this horrible disease. But a few passed without warning. All of their families were left with a gaping hole but, for the ones that had no time to prepare, I can only imagine the shock that must accompany the hole.

And I can't seem to fit that into my day-to-day life.