Monday, November 15, 2010

From the Outside Looking In

I have realized today, that no matter how close you are, how supportive you are, how aware you are. Those around you really just don't understand. Unless they are in your shoes, walking your walk, they are just by standers on the outside of the window looking in. Saying they can dance the dance, sing the song, but the reality is, only you and those in your new world truly understand.

Today I had someone very close to me say something to me that I took very offensive. I know myself, and my tendency to over react, so I shared this "situation" with others on both sides of the spectrum. I had my own mini therapy session with those that are a member of my Down Syndrome family, and those whom are not. It's sad that every MOTHER who has a child with Down Syndrome understood exactly how I felt, and every one who did not, thought I was over reacting.

My Thought Process
When you make that comment, using "retard", "short bus", "special ed"...9 times out of 10 you are using that statement to refer to someone or something in a negative respect. Well the reality is, that the terms were all once used on a daily, clinical, educational, normal basis for someone just like my daughter. And it HURTS!!! So, when I may ask you to not use that phrase or word again, my thought is...Some child may look up to you, whether its your daughter, son, niece, nephew, cousin, etc. And that child may notice that you use that description to make fun of or describe another person. Well, what does that child do...he goes to school and uses that same word or phrase to call his friend, or someone he may see at school who is a little bit different from him, or that child that he could be making fun of could be a child with Autism, a child with another chromosome disorder, a child with Down Syndrome, the daughter of one of my friends...or even my own little Grace.

It's hard to make someone understand, when they are on the outside looking in.

Do you think of Down Syndrome every day?
YES I DO!! Do I want to? NO!!!
You may see Grace once a month, or even once a week. And what you see is this cute little butterball who smiles and coos at everyone that crosses her path.
I see Grace daily, and although I see more of our families features in her, then I see Down Syndrome features, but I would be lying to say I don't also see where she resembles some of my friends kids in my Down Syndrome family. I see the slanting of the eyes (still beautiful) the shape of her head (I say to hold all the smartness) the bend in her chubby pinky (her signature bend for the tea cup hold).
I am also reminded on a normal basis when we have therapy sessions, and I am told how well she is doing, but also realize that we are several months behind. I am also reminded when I take her to the doctor and one of the first things the specialist says, "Oh, she is Downs" (ARGH)
I am even reminded when we are in the store and I have people look at her, and smile...that sympathetic smile, and stop to tell me how adorable she is. Would they have said that if she did not have Down Syndrome? So yes, I think of Down Syndrome every day. Do I want to? NO!! Do I think it will get easier as the years go by... I sure hope so!

She is handling this so well...
Compared to what? What does every Mom do with the obstacles that come their way? They make it through it. It's like a great movie once said "Men are supposed to be made outta steel or something?" when the reality of it is...that is what a MOM is made of!!!
Most days are good, and most days are easy. But every mom with a child with special needs, still has her hard days. I am not going to say its a hard and unbearable life. But there are those moments where you hurt for your child. Not because you want your child to be any different, but like every mother you want the best for your child, and wish your child didn't have to try so hard, or put the extra work or effort to do something so simple, that so many others take for granted. But, I truly feel God hand picked us, and chose each and every one of us individually, because he knew which ones could handle the obstacles and EMOTIONS that were going to come their way, and make the best of it, and love that child no matter what. My Love for Grace, is what gets me through those hard times.

So, in conclusion, I hope my post allowed for all of those who do not have a child with Special Needs, that are on the outside of my world, looking in, can have just a little bit better understanding of why something that may not mean so much to you, can hurt and be so personal for me.