Words Can Hurt

I hate the word disease. Pelizaeus-Merzbacher Disease. Ugh. It makes him sound like he has leprosy or herpes or something. Like he's contagious. I know it's just a word, just a label. But it labels my son. I don't like it. I don't want people to hear or see that word, disease, and automatically make up their mind about Noah.

If you look at him right now all you will see is a beautiful, chubby, sweet little baby with a trach. I know when we get his wheelchair and when he gets a little older and it becomes painfully obvious that he is different, people will stare. I know I used to. I still stare, but for different reasons. Now when I see a child in a wheelchair I want to talk to them. To learn who they are. Not turn my back, look the other way, and silently thank God that it's not me.

Well, now it is me. It is my life. It is my son. And it hurts. I hate all the labels. 

Severely developmentally delayed was one we got when Noah was 6 months old. That one hurt me big time. We still didn't know about Noah's PMD and for all I knew he could still "grow out of it" as many doctors had suggested. I was still blissfully unaware of Noah's condition and I hoped and prayed with every ounce I had that one day, 6 months from now, 5 years from now, we would be looking at our healthy, normal child and all of this would seem like a foggy, crazy dream. Severely developmentally delayed was not something I wanted associated with my perfect and beautiful baby.

I also struggle with terms like medically fragile, special needs, or handicapped. I know he is all of those things. But I just hate the labels. People will instantly come up with their own judgments about Noah when they hear those words. I don't like that.

Sometimes I will be out with Oliver somewhere and I will start talking to another parent about our kids. I always mention that I have a baby at home because I don't want Noah to be left out. I say something to the effect of He is at home with his nurse because               . And that's where I would have to fill in one of "those words" that I really don't like. But I also want that to be an invitation for the other person to ask about Noah. I love to talk about him. Sometimes they ask, a lot of times they simply say Oh. That is why I hate those labeling words that make Noah seem different, sick, strange. Oh.

It hurts. It sucks. I hate those words.