My son has Down's Syndrome. Not a disease.

There are some things that have been weighing heavily on my mind. I have been trying to so hard to just let  them go and for the most part I have been able to do so. I debated whether to post this in the blog because I was afraid that I'd offend or upset some folks. But I made a promise to myself that I'd put it all out there and be honest with myself about how I was feeling. 


Part of my acceptance of Sean's diagnoses was that I had to accept that he doesn't have a disease. I have had to accept that this isn't the death sentence it felt like when we got the news that he wasn't what we'd consider perfect. Some days it still feels like it is a death sentence, but most days I have truly been able to grow, accept, & move on. 


But when I speak to other people and I mention that we're preparing for his birth & his life because he has down's & a heart defect, people will often look at me and tell me they're sorry. I feel like screaming "There is nothing to be sorry for!!!! He's perfect in his own way." Then I also hear of people who don't want to tell others for fear the people they tell will be devastated. While I understand that, it upsets me. It makes me question whether my thinking is wrong. It makes me question whether I am in fact making the right decision in raising Sean. It also makes me question how those same people feel themselves. Do they wonder if we can really do it? Do they think we're making the wrong decision?


Yes I know everyone close to us was/is affected by the news. Yes I know not everyone is able to accept & move on in the manner we have been forced to. However, I feel like it sets me back in my recovery. Yes. Recovery. I have been trying to recover from the constant beating I feel like I have been taking. Every time I get more bad news, it's like another punch in the gut and I can't breathe. Every time someone looks at me with pity or tells me they're sorry, I feel the same way. It's like I'm reliving it all over again. When people are afraid to tell other people or discuss it, I feel like I'm reliving it all over again. I feel like I'm fighting a battle that I shouldn't have to fight. I feel like I'm fighting for my child to be accepted. It feels like I'm fighting for my baby to just be loved no matter what. 


I'm upset that I will have to relive my heartache again & again when some people finally find out about Sean's diagnoses. I will have to continually answer questions I shouldn't have to answer.  I will have to deal with looks & pity that I shouldn't have to deal with. 


I can't say how I will react to all of this in the future. If I could tell you what's going to happen in the future, I'd be rich. Hopefully my intuitions are wrong. Hopefully people will stop acting as though we need to be pitied for not having a "perfect" little boy. Hopefully people will stop feeling like my son's conditions need to be hidden.