Wednesday, May 19, 2010

What Would You Do?

I saw a new show on ABC tonight, called "What Would You Do?" It sets up hidden cameras and actors portray different scenarios, hoping to get a reaction out of the bystanders. One of the scenarios tonight was of a young grocery bagger with Down Syndrome (really an actor) and a loud mouthed patron (also an actor), who criticizes the bagger and calls him names, taunts him, etc. Even though you know it is a set-up, it completely broke my heart. Many of the bystanders did and said nothing, even though they felt it was wrong to treat someone as the (actor)patron did. I cried. I cannot imagine ever having to defend my youngest son, and I hope I never do, but the fact that many people do have to defend against this kind of discrimination is so heartbreaking. But one bystander who defended the grocery bagger, said something that I thought was brilliant. She said to the patron, "Some people you can see their disability, and some people you can't. And sometimes it's the people who you can't see it that are much worse (meaning that the cruel patron was really the one with the worse disability!) I AGREE!!

I have also been in touch with another new Mom with a baby who has Down syndrome. She did not get her baby's diagnosis prenatally, but about a week and a half after his birth. She is still trying to process the news and it really brought me back to my own experience and feelings when the news was fresh. I am still processing what Down syndrome will mean for Elijah and for our family, and I have a feeling it will be an ongoing matter to process. I'm reading a book called, "Babies with Down Syndrome (A New Parents' Guide)". The book lists a lot of possibles for physical characteristics, medical complications, and developmental delays. I found myself silently checking things off the list..."Well, he doesn't have this, that, or the other." But, there are so many things that still surprise and shock me. For instance, I know many children with Ds are not walking until later than age 2. This still sort of has me reeling (Really? Age 2?) And that due to muscle tone issues and palate and tongue size, many don't talk until much later, and many have issues communicating clearly their whole lives (Sigh...how frustrating must that be- both for them and for us parents?) I know there is a large spectrum and that the range of development delay is huge, so I find myself thinking, "Well, Elijah won't have this problem or that problem..." But what if he does? Is it better for me to live with the rose colored glasses right now, or should I be trying to process the full range to avoid disappointment later? The good news is that all I can really do right now is stay in the moment, because Elijah is just a baby. He's a baby who just needs to be loved, held, fed, changed, and cleaned. Plus, there is Christian, who needs also to be loved, held, encouraged, disciplined, changed (hoping to tick this off the list soon) and cleaned (in particular because of the previous verb!). Charles needs love and support too. And lastly...though not lastly is what I need for myself, so I can continue to be a good Mom. A happy Mom. A rested Mom. A patient Mom. So, even though my brain occasionally meanders through all of the possible life scenarios it can think up, I don't have time to dwell on those. There is living to be done.

The good news for today, is that Elijah had his one month well-baby appointment with our pediatrician this morning. (One month already?? I can hardly believe it.) He has gained 10 oz and grown half an inch. He is in the 25th percentile across the board in weight, height and head circumference. So...so far, so good. Grow little man, grow!!! In the last few days I've been getting more comfortable and more confident with the amount he's eating- he nurses for a long time, my milk seems plentiful, he has good, heavy wet diapers and he's gaining weight. That's all that can be done. What he grows, is what he grows now- it's not for lack of milk or something I'm doing wrong. ...And on that note, I hear Elijah stirring for a feeding, so I'm back on Mommy Milky Duty! :)

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