Saturday, October 27, 2007

I Am The Worst Advocate.....

Today I had to make an emergency run to the grocery store. Andy was at our old house, and there was no one to watch Rhett so I had to bundle him up and take him with me. All we needed was milk and some benadryl, (which by the way is the only thing that Rhett can have for colds, cardiologists orders.)

I had him bundled up in a quilt so that I could keep him from breathing all the nasty cootie air that is in grocery stores. I just went to the small one in town. I put him in the cart and he immediately took his blanket off.

As we walked in there was a little girl walking by us with her mom. My heart sunk when I heard the words....."Mommy that baby looks funny." At first I thought, "well of course he does, he has goo coming out of every pore in his body, red irritated cheeks and nose, and he sounds like Darth Vader when he breathes, not to mention the tender grips on his face."

Then I realized when her mom and I made eye contact and this mom ducked her head ashamed, that the little girl was talking about Rhett having Down Syndrome. My jaw fell to the ground, and I didn't know what to say. I am sure the world turned around us at least 3 times before we both turned and went our separate ways.

To me I don't see the Down Syndrome. All I see is Rhett. He is who he is and I wouldn't trade that for anything. This was the first time that I have ever had anyone ever really say anything about him like that. Usually little kids just comment on the "Band-aids" on his face. When I explain to them that it helps him keep his oxygen on at night they say okay, and are on their way.

But this caught me completely off guard. I had no idea what to say.

But it did leave me with a few questions....

1. Is it silly of me to forget that Rhett has a disability sometimes? I see him as my child who is doing things at his own pace, not as a child with Down Syndrome.

2. Why did it sting me so bad to actually hear the words come from someone else that he is different?

3. Why did I turn around and run away? I am not ashamed of him, nor do I find anything wrong with the fact that he has Down Syndrome. In fact I am proud as punch of him. He is the light of my life, just as the rest of my kids are.

I have always had positive reactions from everyone around us, strangers or not. This was a huge blow to me. I know it shouldn't be, I knew it was coming, I knew not everyone would see him the way I do, but I didn't expect it to be today.

I just wanted to say, "No, You don't understand, there isn't anything wrong with him. He is just like you or me he just does things when he wants to do them, and at a little slower place. He likes M&M's and Sesame Street, pizza, and playing with toys just like you."

That's what I should have said. But instead I acted like the Cowardly Lion and walked away. I hope I can be prepared for next time. Next time I will have something to say. Ugh....I can't belive I did that.


Michelle said...

You know, it's very possible that little girl was talking about the tender grips on his face and not the Ds; if she is that young kids don't know the differnce w/Ds. It could have been the MOM who noticed the Ds when she looked at Rhett to see what her daughter was talking about, it's unfortunate the mom didn't use the opportunity to talk to her daughter about differences and things we don't say in front of other people (and by differences I mean in general - everyone is differnt - tall, short, fat, skinny, black, white etc). Hopefully she did talk to her daughter afterwards.

Don't be so hard on yourself though; I'm sure it was hard to hear another kid refer to Rhett as "funny" as that would have hurt me too, but you were caught off guard, I don't know what I would have said in that situation either.

Hugs to you!

Kei said...

No, not the Cowardly Lion. How about a mom in a hurry to get what she needs, who's been tending to everyone else, moving, making sure her little boy has everything he needs, and who sees her son as a whole. We don't all have quick comebacks at the ready... why should you anyway? Like you said, you've never encountered anything except questions about his tender grips?

1. It's not silly to forget that he has a disability. You see him for who he is.

2. Because you trust that people have unbiased hearts like yours.

3. Attribute this one to one of those awkward moments... The other mom ducked her head ashamed at what her child said.

Now, why do you think it's all up to you to say something in a situation like this? Think of it in reverse~ if you had been out with one of your kids and they said something about someone else's baby looking different, would you have reacted like that mom? Or would you have knelt down to your child and said something to them. Or would you have said something to the other mom so she wouldn't have felt so on the spot?

I'm sorry it stung... (((HUGS)))

LeeJo said...

You're not alone, we all have those moments.

Niksmom said...

Kei said it perfectly! You don't have to educate every person you run into...that child's mother should have addressed it. In my hopefully optimistic and naive little world, I like to think she did so when they got home.

Glad Rhett is feeling better, too. :-)