Two posts in one night.. I have quite a bit of stuff floating around in my brain tonight. I figure while and I have the time, I may as well post.
Wendy goes for a suck swallow study Monday. I'm pretty sure it will be the Modified Barium Swallow Study, where they will give her formula by mouth with a bit of barium in it and they will watch on a fluoroscopic screen to see if she aspirates. I am really hoping she passes this test. Wendy loves to suck her thumb now, so I think now is the time to get a bottle in her mouth. I also want her to have the feeding pump gone before she starts going to school (even though she may not even go to a public school because Zed and I are considering homeschool). I'm afraid kids will be cruel to her. There are many parents that don't teach their child proper manners, like it's not polite to stare or make fun because someone is different. Hell, there are a lot of adults aren't that respectful.
I was in Target the other day. Wendy was in her Snugli sling and I was carrying her. Her feeding pump was in the buggy and I had the bag of formula hanging from the handle of the buggy. Two young employees (probably in their 20's and old enough to know better) actually stopped stocking the shelves, turned and pointed at Wendy's feeding pump. I was disgusted. I know they weren't talking about how cute my baby was because she was bundled up against me and no one could see her. I really wanted to ask them what their f-ing problem was and tell them to go to hell, but I figured acting unrefined wouldn't help the situation any, so I calmly got my purse and Wendy's feeding pump and left. I also left the buggy sitting right near the employees, full of everything I was intending to buy. I figured they were being rude by pointing and staring, so I would be rude and let them put up my mess.
Then, Zed and I ordered Chinese last night. I had been sitting in the floor playing with Wendy and her rattle when I got up to answer the door. When I got up Wendy started crying. She lady that delivered the food looked at her and said "What's wrong with her?". Zed and I both assumed she was asking why the baby was crying, so we both replied "She just wants to be held". The lady then proceeded to say, "No, I mean what's wrong with her? Is she sick?" At that point I realized she was talking about the feeding pump. Me, being a mother and very protective, wanted to say "There is not a damn thing WRONG with her." But I didn't. I just said she was premature, signed the credit card slip and shut the door, all the while the woman was still staring.
Just because Wendy has a feeding pump and a colostomy doesn't mean there is something wrong with her. Just because she doesn't do all things the normal way doesn't mean she's not right. I know my child has health problems, but Zed and I treat her like a normal baby and I expect everyone else to do the same. It's hard enough to drag around a feeding pump and try to grocery shop while Wendy is attached to the buggy. People don't have to make it worse by staring and pointing.
You know, I really hate the word normal. What is normal? And who gets to decide what normal is? I mean, who wants to be "normal" anyways? To me, normal is average. And Wendy is far from average. She's extraordinary.
my youngest had problems with aspiration we found out that when he was 2 months old was in NICU at Egleston which they did a great job there. We nearly lost him cause he got pneumonia from the aspiration. He was in the hospital for a month and had to be on a feeding tube for a year but his went threw his nose. It's no fun watching someone look at your child cause you gotta carry all that equipment around I know I got looked at too with mine. People should have more consideration that everyone isn't the same.
ReplyDeleteEXTRAORDINARY.... A perfect word for Wendy. If I ever passed you in the store, I would want to see Wendy smile :). I love a smiling baby.
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