October is Down syndrome awareness month

**There has been more added to the bottom of this post!**

One of the first thoughts I had when I found out that Benjamin has Down syndrome was, "Oh, no. Do I have to become one of *those* moms?" You know, the kind of mom that is only driven by a cause. With bumper stickers and caustic remarks to anyone who isn't on the same page as her. The mom who thinks that everyone should understand where she is coming from and should automatically know the right and wrong things to say.

See, I'm just not like that. I know who I am and I know where I am coming from, and while I definitely feel like I am learning more and becoming more understanding of others' perspectives, I remember what it was like to have NO idea about these kinds of things.

I read a list shortly after Benjamin was born. It had two parts. Things NOT to say to new parents of a Down syndrome baby and things TO say. I gotta say, I think we heard most everything that was on the list. And I couldn't disagree more with that list. For copyright sake, I can't post the list, but from what I remember, the top things NOT to say include "I'm sorry," "God gives special kids to special parents," "Down syndrome kids/people are the sweetest people," and "You're handling this better than I could."

While I can see why these things might be politically incorrect and have the potential to be insensitive and/or hurt feelings, I was actually comforted by hearing those things. Let me take them one-by-one:

"I'm sorry." Let's be honest. We are all sorry when a baby is born and has something wrong with it. Now, I know I am stepping on toes b/c many parents of DS babies say that there is nothing wrong with them, that they are perfect and just have an extra chromosome, etc. But for me, I just don't agree. Maybe I'm still a rookie. Parents with more experience always tend to think their opinion trumps that of a new parent. And perhaps they are right. These are also the parents who say that if they could, they would not wish the DS away. While I see the point that DS is part of who Benjamin is, there is no way I would willfully *choose* this for him. So, yes, I was sorry. I am sorry. I am sorry that my son had to have open-heart surgery at five months old. I am sorry that he will most likely have the mental capacity of an 8 to 10 year old and will have to have individual help every day that he is in school. I am sorry that he will most likely not marry and that he will not have children. Am I sorry he was born? Would I choose NOT to have him? ABSOLUTELY NOT. But if I could take away that extra chromosome and still keep my same, sweet, baby boy, I would do it in a heartbeat. No pun intended.

"God gives special kids to special parents." Eh, this one is okay. I certainly don't think that God is/was punishing us or trying to teach us a lesson. What I do know for sure is that God's love has never been more tangible to me in all my life. More believable. More intense. And I know that had I had a "normal" child, there's no way I could have learned all I have learned (and still have to learn). People tell us all the time that we are strong. But I must say that we are only strong because of Christ living and working in us. Because left to my own emotions and desires, I'd be falling apart. I think that God gave Benjamin to us for many reasons. Some of those have already been made evident and some are still to come. Stay tuned.

"Down syndrome kids/people are the sweetest people." This one probably bugged me the most just because it seems like EVERYONE said it. But Matthew and I recognize that when someone you know is faced with a new and unfamiliar situation, you say what you think is the best thing to say. I can't say that put in the shoes of our visitors, that I wouldn't have said the exact same thing. And you know what? So far, Mister Benjamin is THE SWEETEST THING. I don't necessarily know yet if that is his Down syndrome or just him, or a combination of the two, but it doesn't matter. He's sweet and he's mine.

"You're handling this better than I could." I suppose this one is not the "right" thing to say because it's highlighting the fact that something has gone wrong. Umm..hello? Can you imagine being told an hour after your baby was born that he has Down syndrome? Something went wrong. Not in God's plan, obviously, but in my plan. And so it takes some time to adjust that thinking to realize that there are no mistakes and that there is a silver lining. The fact that people think we are handling it well only speaks to the power of my Lord and Savior.

I am sorry if I am offending some of you. I truly don't mean to. And I'm not saying that anyone who is/was offended by some/all of these sayings is wrong. It's your right to be offended. Just as it's my right to take comfort in someone saying something from the heart. I was in their shoes a short while ago, and I don't expect them to know what it feels like. I don't want anyone tiptoeing around the issues. My name is Angela, and I have a son with Down syndrome. It's okay. We can talk about it.

So, in that vein, I would like to give you the opportunity to ask any questions you might have about Down syndrome. There are a lot of misconceptions out there, and not that I am an expert by any means, but I have learned some things since April. And I have all the books. Please don't be hesitant to ask anything you want. I will update this post later and try to answer them.

**Edited**

This question comes from my friend Mary Jo who lives in Minneapolis:

So Benjamin most of the time doesn't "look" like he has down syndrome. I've seen pictures of other babies with DS and it seems more noticable physically than with Benjamin. It's not just my view being skewed because of how much I care for you and your family, other's that I have shared your story with say the same thing. Do you know, does him not "looking" very DS corralate at all to how severe or not severe his DS might be?

I agree that his physical characteristics don't look as strong as some others I have seen. I, too, have secretly wished that this might be an indication that he is not as delayed as he could be. But I don't know that we can know. There are three kinds of Down syndrome. I will try to explain them in layman's terms.

1. Non-disjunction DS--This is what 95% of DS people have (including Benjamin). Every human should have 23 pairs of chromosomes in each cell. Non-disjunction DS means that in all of the cells, there are three chromosomes in the 21st one, giving them 47 total. Because the extra chromosome is in all the cells, it's widespread throughout the body, meaning the *potential* for severe delays is there.

2. Mosaic DS (1 to 2%)--This means that the extra 21st chromosome only shows up in some cells, not all. Mosaic DS people can be, but are not always, more advanced because they do not possess the extra 21st chromosome in all of their cells.

3. Translocation DS (3 to 4%)--This means that there is just a fragment of a third 21st chromosome, and that fragment is attached to another chromosome, for example the 13th or 18th. I am not sure of the advancement potential of this type, but I think they are most like the non-disjunction DS.

When Benjamin was born, that was one of our first questions for the doctor: "How bad is his case?" (Ironically, this was also one of the questions you're not supposed to ask parents of DS babies. But I sure wanted to know!) The thing is--you can't really know. We won't know or have any indication of how far delayed Benjamin will be until he does or does not do something "on time." We won't know if he will fall the category of mild, moderate, or severe mental retardation until he is older. Because he has non-disjunction DS, that extra chromosome is in all his cells. I don't know if his physical characteristics have anything to do with that, though. Ooh--Matthew just looked it up. Here is the sentence verbatim: "No connection has been shown between the number of Down syndrome features a baby has and that baby's cognitive ability."

I will say that both his pediatrician and his physical therapist have been impressed with his muscle tone. He is definitely more delayed than a normal baby at almost six months, but he is doing quite well for a DS baby. That is a difficult line for me as a mother to walk. It is a struggle, to be quite honest, to not compare him with Andrew. Any mother knows we're not "supposed" to compare our children, and we all know that children develop at their own paces. But at six months, Andrew was crawling and sitting independently and pulling up on things. Benjamin is nowhere near that. And most days, I'm okay with that. But then I read that many DS children don't walk until two or three (or even older). And that sometimes they don't talk until they're three or four. It makes the future seem bleak. But only when I want it to. Only when I sit and ponder it and wallow in sadness. Which is okay in seasons but not to stay there.

One interesting thing about DS adults is that males with DS are sterile (with only three recorded instances of a DS male fathering a child) and if a DS woman has a baby, there is a 50% chance that her baby will also have DS.