Monday, June 6, 2011

I pity the fool . . .

who pities me. Yep I said it. Don't. Just don't. Don't look at me with those big doe eyes and pity me because my son isn't your idea of normal. Don't say I'm sorry. Don't look at me with THAT look. And most certainly don't ever look at him that way, don't ever make him feel like he is less of a person, like he is defected, deformed, rejected or doesn't belong. You are so wrong in so many ways if you ever look at a child like that. He may have Down Syndrome but at 3 years old he doesn't know nor does he care. I'm scared of the day that he realizes. I'm scared of what it might mean, what I should say to him. I'm scared that it might break mine and his heart all in one moment. That it might destroy any semblance of normalcy that we are striving for and sometimes achieve. Please don't make me have to have that conversation earlier than what he is ready for.

Seth is 3 1/2 and has no idea that life is any different that what he has right now. I'm happy with that. In fact I created that. I let him believe that going to doctors and being sick and struggling to learn is normal because it is OUR normal. It is our life. I'm not going to teach him different, I'm not going to tell him that he is different. We are all different. Our lives vary so much due to circumstance, one of mine being that my son has Down Syndrome. Therapy is normal, school is normal, going on the bus every morning is normal.

So next time you see some with a disability, don't look at them like that. Admire their strength, their courage, their willingness to accept who they are because they don't have a choice. There is no choice when it comes to disability whether you are born with it or it is something that happens to you. But life continues. Life adapts. Humans are amazing beings, we have the ability to change and grow and learn.

On the other side of things . . . don't look at me like I'm a saint because I have a child with a disability. I'm not. I'm really not. I'm a 28 year old mom just trying to figure things out one at a time. I fuck up. I fuck up big time. (Sorry but if cursing offends this may not be the blog for you.)

I didn't magically become this perfect person because of Seth. I didn't sprout angelic wings and a halo. It doesn't change who I am intrinsically. I'm Shanna. That's it. So simple those words are yet they mean so much. I still like hardcore rock and metal music, video games, fantasy literature, nerdy and geeky things like Star Wars and guess what . . . so will Seth (hopefully).

So many people tell me that they admire my strength or they are impressed by the lengths I go for Seth. That's being a mom, that's being any mom. Any good mom worth their salt would do the best they could for their child. I lose my cool with Seth, I do. I did today in fact. Seth was dragging his legs down the block and doing the "flop and drop". I couldn't carry him anymore and I wasn't going to. I was tired. So I yelled at him. It wasn't nice yelling either. It involved words like "ass" and "pissed off". Suffice to say Seth got the point and started moving his ass.

Seth is still croupy and it's getting to me. I do that self pity thing once in a while (I'm allowed). That croupy noise is a like a drill in my head. It makes me want to break things. I think it is more about the noise being such a part of our lives and the dread that comes knowing Seth is sick AGAIN more so than the actual noise. I have bad associations with that noise. So while I don't want you to pity me, it's mostly because I'm more than capable of fucking myself over with that one. . . thanks.

So yes I can do and have done quite a bit of self pitying. It's not a good place. Because in the end I eventually have to suck it up and continue on. There is no break from Down Syndrome. There have been many times where I've just cried and I've said "I need a Down Syndrome break". It's not coming. It never will come. I still crave that break but between the times of sickness and doctors appointments I try to live life as normally as possible. I try not to think about DS.

And every morning and afternoon and night when it comes to meds time or a yearly IEP or a trip to the doctors office, I'm reminded all over again. It's that constant stabbing at my heart that just might never heal. I'm working on healing those wounds.

1 comment:

  1. I could have written this. I feel you, definitely. Hugs.