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So, here's the deal:

Under what circumstances do we tell people outside our intimate circle of friends and family about E's Down Syndrome? These would be co-workers, casual acquaintances, in other words, people we may not know well (or with whom we're reconnecting) but who would touch our lives in some way.

Here's why I ask:

1. We don't (and wouldn't ) introduce family members or describe them with an, "Oh, that's my wife, she limps." (I don't, but you get the idea). Why should E's diagnosis merit preemptive mentioning?
   
2. There will be enough preconceived notions about what a child with DS will (not) be able to do, why trigger these in someone who won't really have any personal interaction with her or us? The DS is just one part of who she is and what she will be able to do.
   
3. When we tell people, we have to deal with their baggage about it, not just their preconceptions about Down Syndrome and what it means. Mostly, telling has been a positive experience with people sharing stories about people they know with DS and so on. We have, though, had some reactions from within the intimate circle where we ended up defending and justifying our decision. We know that we will have to educate people about the realities of DS, but we expected support and understanding. When we didn't receive it from those closest to us, it's made us a little defensive about telling others who don't know us. Why take on someone else's baggage about the decision when we have our own?
4. If we don't tell up front and the person later finds out, will we ruin an opportunity to connect with someone as I did when I told M's dance teacher? In telling, I found out that the studio's owners have been thinking about offering a dance class for kids with special needs. Yay!
5. If we don't tell up front, will the person feel like we're hiding it or are ashamed of E? I tend to err on the side of telling people up front so that if they see us, there's no question or awkwardness as they try to figure out if she has something wrong* with her. She has obvious physical characteristics of Down Syndrome, but without stating it clearly, people may wonder.
   *not that there is anything wrong, just that she's not genetically perfect. She's perfect to us just the way she is.
6. Even though we don't want to make a big deal about it, at the same time, it is a factor in our lives and in controlling who is told and how allows us to control the message, as it were.
   

For me, I think the situation will have to determine how/if the person is told.

Family Newsletter: February 2008

Editor's note: I've opted to change to monthly vs age by month (e.g. 2 mo for E and 57 mo for M) title because it's too hard to keep track. Ergo, this is the February recap. I'll also be trying to post the newsletter at the end of the month.

My Beautiful Girls,

This has been a very busy month for all of us, but especially you E. You've spent a lot of time in the car as we follow-up the outstanding items from your time in the NICU and general preventive medical issues. Your hearing is normal (we think), your hips are fine, and you continue to gain weight well.

All our time hasn't been spent in the car, though. Your personality continues to emerge with every alert period (usually the 45 minutes after eating) when you like to wiggle and look around you. We have a musical light that you enjoy gazing upon as well as various other brightly colored or contrasting objects. You wave feet and hands vigorously and are especially drawn by things that are red.

You've begun "talking" to us. You have a number of sounds you make including one frantic little laugh when facing the bottle and a funny coo when you want to talk. You also smiled at me one day, then at dad a few days later. You have a beautiful smile and you gave me such a big one for your first time. I was half convinced that it was just an involuntary one (which you do when you're sleeping), but then dad came into your room with you a few days later and told me that you smiled for him!

Other firsts this month were that you're beginning to find your hand and I'm convinced that you will suck your thumb like your sister does; you've had your first baby massage (good for weight gain and general well-being); and you've had your first cold. We also had our first assessment with Early Intervention and so far, you're developing as you should, which was good to hear because you are so strong and curious that it's hard to see where you have developmental delays.

You're very determined to be in the position that you prefer. If awake, you prefer to be held cradle style so that you can see what is happening. When I am nursing you, if I've put you on my shoulder or laid you on my chest for burping, you will start bobbing your head towards my breast if you're still hungry. It looks like those birth videos where they put the baby on the mom's stomach and the baby begins working its way towards the breast. You totally do the same thing. When you're awake, but quiet, you'll maneuver yourself into a position so that you can gaze up at me. You look at me as if I were a rock star, while I gaze upon you and think how beautiful you are and how much I love you. When we're having our Mutual Admiration Society meetings, I am reassured that I will be okay as your mom.

While you've been experiencing all sorts of firsts, your sister has become The Authority on all things about you. In fact, yesterday when asked who was in charge of you, M answered, "You, Me, and Daddy." When I asked again who was in charge of you, M answered the same. I told her that she was, in fact, not in charge of you; that it was just Daddy and me. M also likes to expound on why you have to stay in your car seat (for safety and it doesn't matter if you like it or not) and other manners of your care (e.g., burping, dressing, etc). Anything we share with M gets incorporated into her Big Sister responsibilities as far as she's concerned.

M, your first this month was the cavity you had filled. Needless to say, it was traumatic for all of us, not only because a cavity just sucks, but because our dentist wasn't the most patient with your fears. We'll be looking for a pediatric dentist for your future visits and will not expose you to his insensitivity. It's not that he is a bad dentist, but I think that because of your poise and maturity, that it's easy to forget that you're not quite five. Four does not have the skills to understand that postponing a tantrum will help get the job done faster. Regardless, this was one situation where I felt like I failed you for not protecting you and being a stronger advocate for what I knew you needed versus what he was providing. For that, I'm sorry honey.

You continue to be fascinated by lists and forms. Thank goodness for the people who bring scrap paper to schools because their outdated purchase orders, with their tables of numbers and products, are like manna to you. You pretend they are your homework and you complete them by lining through each item in various colors which indicate who will/will not be attending your birthday party. There have been a couple times where my presence was in question until I informed you that as Daddy & I will be paying for said party, we'd definitely be in attendance.

You also write page after page of names. In fact, one morning you and Daddy filled a half dozen or so of 5 x 7 cards with lists of things such as: Names People M Doesn't Know; Names of People M Does Know; Foods M will Eat, etc. Since the beginning of the month, though, you've progressed from asking us to spell out names of our family members and your school friends to being able to spell many of them by yourself. You find these lists to be treasures and it's been difficult to dissuade you when you've wanted to gift them to your school teachers or a favored dance teacher. Luckily, we've made the policy that we only give pictures and not lists which seems to have stopped you for now, but I'm sure you'll come up with some exception that will tax my brain to find a counter argument for.

You continue to process the changes in our family through various play scenarios. A few days ago, all Barbie Island Princess Mommy was nursing one of the babies. Then, this morning, as I was nursing E, you informed me you were going to feed your baby from your boobs. You then went in your room, returned to E's room with Sarah (one of the Fisher Price dolls), sat down on the floor, lifted your shirt and fed Sarah. I have to say, you had good technique, especially when you burped her.

There are some bittersweet moments with you as you make plans for you and E when you are big. One night, you said to me that you had a secret to tell E. Then you whispered in her ear (which I could totally hear), "I'll love you forever." You also told me one night that you'll probably get married first because you're the biggest. It's hard, sometimes, realizing that we've made a decision that will impact you, but Daddy and I hope that your compassionate and loving nature will continue and that you'll see how empty our lives would be without each other in it.

Lastly, this has been a big month because Daddy went back to work about midway through. While in one sense it was nice to resume our lives and learn what changes come from having two kids. In the other sense, though, there are holes in my day when Daddy is at work and M is at school. I look forward to the best time of day when we're all home together.

Love,
Mommy