Most days I just go about my daily business. Of course I am always aware of my son’s illness and it rarely leaves my mind but most days I am not bitter. I don’t often shake my fist at God and ask “Why Me?” or “Why Reed?”. But not every day. Some days I am can’t shake the negative thoughts from my mind. I get angry and I lash out. I admit it.
As an example, the other day I was giving Reed a bath. His sister walked in and was upset because I was using her new Loofah (not sure how you spell it – but you know what I mean) on him. Aziza asked me not to use her Loofah on him because she was afraid she would get Sanfilippo. Keep in mind she is eight years old. I paused and then got angry and raised my voice at her. I raised my voice because I thought she was being mean to him; that she really and truly understood and was just disrespecting him. I said something to the affect of:
I don’t ever want to hear you disrespect your brother like that again. You know that you can’t catch Sanfilippo. Where did you get that from? Are you friends saying stuff like this to you?
She walked into the room with the toilet, shut the door and cried… and I felt like crap. There are days when I can’t do anything right. As if I didn’t feel bad enough about Reed, now I was hurting his sister’s feelings too! After I calmed down, I – of course – explained the situation. I clarified that she can’t catch Sanfilippo and I think that she now understands; but I thought that she already understood, sigh.
Most days I can keep it together, but today I cried a bit. Dear God, we need a bit of luck to come our way. There are days when I can’t help but feel responsible – stupid as that sounds.
This video does cheer me up a bit. It’s the kids getting ready for Halloween: