Tuesday, October 14, 2008

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.

30 comments:

Cooper's Momma said...

You are a brave woman. I was behind two brothers in the airport yesterday. One had DS, the other didn't; they were both about 13. Let me tell you, the brother with DS was sassing and pushing his other brother around. "The sweetest kid" isn't the description of him, he could hold his own any day. Just one observation of one family, but I laughed when I saw it.

Mary Jo said...

OK I have a question. 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've been curious about that... and since you asked for questions :)
And RE the rest of your post, your raw honest with yourself and others through this process continues to be astounding. What a gift it must be for other mom's of DS children that struggle with accepting the same feelings and thoughts.
HUGS - MJ

Stephanie said...

You are going to be such a GIFT to so many moms of DS babies. What an inspiration you are to us all!!
I have a question... how cute is baby Benjamin?

Diana said...

You are so right Angela people like me with "normal" kids have no idea how to address your friends who you love that have just been given very difficult news. In fact there are moments that stick out in your mind as time goes by... like you remember where you were standing, what you were doing when it happened... The day Benjamin was born and I received that text message my heart sunk like it was my baby... I love you guys so much. You immediately feel guilty for having healthy kids! The best way I "deal" with those awkward moments is to just place the DS on the side and see Benjamin for Benjamin. He is his own man! He emerges more and more in every picture and I will love him just as much as I love Andrew!! When I was reading your blog the other day Emma said that Benjamin matched Ellie b/c the were both cute and didn't have hair!!!! Ellie has even less hair now that she is getting cradle cap UGH! If you need anything while you are homebound please call!!

Amber said...

Psshhht. I ain't sorry you get to snuggle with him.

I'm guilty of the perception (just my own) that DS kids are very sweet and happy go lucky. That said, I also know one that is a total brat. But that has more to do with her parenting than her DS:) I have no worries about Benjamin.

I had hot dogs for dinner.

Diana said...

Ohhh I forgot to mention you are so BRAVE... I wish I could care a little less about what people think and be a little more real like you!

Diana said...

on separate note... You need to do facebook

Beth Chappelear said...

You have always been, and always will be, so full of the right words. Even though sometimes you think you are too brash and bold, your words of wisdom are always so true and in their own way... insightful! My question is the same as the one that someone else already asked - Benjamin does not look like he has DS in his pictures. Will that change? He is just downright adorable in my opinion.

Stephanie said...

You do need to get on facebook.

Jane said...

Hi Angela, Keep blogging! Hope you will be able to fill that empty seat at church soon. J. Frye

Amber said...

facebook
facebook
facebook

I would LOVE to stalk you in three places!! Well, four including my obsessive texting. I just got a qwerty phone, can you tell??

Cooper's Momma said...

Facebook, Angela.

Kristen said...

Ditto Facebook.

And what an amazing post. You once said (in your BZ post regarding Benjamin's diagnosis, I think) that, "We love [Benjamin] and we know you will too." That pretty much sums it up. A child is a child and DS or not, he is pure love. Thank you for sharing your life!

Susan Massoud Farley said...

Thanks so much for your kind and honest words about DS. I can't think of any questions, but it is awesome of you to open up "the floor" to questions and comments. Those pictures are sooo adorable. I LOVE B's smile :)
Don't waste your time, girls, I too have been trying to get Angela on facebook..so far she is a no go!!
Love ya,
Suse

Susan Massoud Farley said...

PS- The only thing I hate about google blogger is the ANNOYING word verification box you have to type every time you comment. And I got news for you, Google- "cixvy" is not a word!!
Ok, I feel better now :)

Sara said...

I am glad MJ asked that question, because I have thought it and people I have shared your story with have asked me about it.

I remember linking to that list of Do's and Don't's in the days following Benjamin's birth and I remember trying so hard to follow the rules. But, in the end, I think some of those things are ridiculous.

I seem to recall that the reason we can't say "you are handling this so much better than I would" is because it turns the focus on *me* and not *you* and forces you to affirm that I would handle it just as well. Lame.

Screw facebook, keep blogging.

Sara

Jenn said...

I lurk on your blog Angela - It's funny because the first thing I noticed about Benjamin was that he physically did not look DS. (at least not to me). I have two uncles with DS so I'm pretty familiar with the physical characteristics. Being told that the child you expected to have was not to be can be devastating. Ours was more a dawning drawn out realization over the course of a few (tough) years, but I also welcome people asking questions and am pretty open with people who want to know. Yes it's hard to compare your children. It's also hard to hear how other kids of similar ages are doing - and it gets harder when the differences become more pronounced. My youngest will be 5 and can barely speak - he is only recently toilet trained and still cannot dress himself. It's hard to deal with people's preconceived notions of your child's disability. I'm sure that you have heard everything people shouldn't say, and for THAT, I am sorry - because it's a hard position to be in. Rest in the knowledge that you will do everything you can to ensure that Benjamin reaches his full potential - just like you will with Andrew, and everyone does with their kids. I hope You will like me, appreciate the small steps. I feel so much more protective of Joey because he is delayed - I know I can't shield him from every mean thing that will be said to and about him. But I want to. OK, enough rambling from me.

Jenn said...

oh and I agree with everyone else that you need to get on Facebook! I'm there!! C'mon - you know you want to!

Anonymous said...

You are amazing. What an example you really are to everyone!! I am proud to have know you most of my life!
Alicia

Anonymous said...

FACEBOOK angela!! ditto.
You and your beautiful "rantings" are a blessing to me. I sometimes laugh out loud and sometimes I "squirt a few".
You are a wonderful mom to both of your boys.
sure wish i could see and hold them both. it's a shame that our family is so far apart.
cuz' Marcia Townsend, Nebraska

Shannon said...

can i add my vote for facebook too???

angela, i love your blog!!! you are so real and uncensored... keep the information coming!

Christina said...

Great post with lots of information. I do have to add though that physical characteristics give no bearing on 'function'. When Kallie was younger I can honestly say I didn't see her DS either. As she got older though, I started to notice more and more features. Not to say this is the same for everyone. Kallie is a tremendously smart girl who amazes me everyday and I can't wait to see Benjamin continue to amaze you with all he will do!!

Susan Massoud Farley said...

Here is my rant on the "things not to say" - it drives me nuts when people say stuff like, "God doesn't give you more than you can handle" which my family and I heard 15 years ago when we lost my niece at one year. I know people mean well, but to say, "God only gives you what you can handle" makes it sound like He is sitting in heaven going, "Hmm, these people can handle it, I think I will give their baby down syndrome" or "They can handle losing a child". My personal (!) opinion is that when we cry, God cries too, and He carries us. I think His perfect will for us would be that no one would ever be sad, or hurt, or ill, or disappointed but human frailties (like chromosomes) do happen because we are human. Same reason people die in car crashes, or have babies that die. I just can't think of God saying, "Hmm, I think this child will die in a car wreck today". This prob. didn't make sense and I prob. didn't state it well, but it's just my opinion. Love ya'll!

heidi marie said...

i think it is wonderful that you are so honest on your post. and your right, not every mom feels the need to jump on the ds bandwagon. i myself can stand all the ribbons, bumper stickers, and awareness bracelets...but i can't stand them for all causes. i do think...or i hope as benjamin gets older you will see his disability as something positive and not something to be sorry about. and if you do not...that doesn't mean you won't be a great mom!

thisismamashouse said...

Angela, you continue to be a true inspiration!!

And as a mom of three..I will tell you that you will ALWAYS compare them to one another, no matter what!!

If I can ask and you feel comfortable answering...how has Benjamin's DS affected your dreams/aspirations for him, or has it changed your outlook on his life at all? What has been the biggest growth or change within you that his birth has brought about? What do you most look forward to as he grows?

The Chatt Pack said...

Amen!

burnurcomputer said...

Anglea, I'm jumping in to post about what you said below: If the sutures are shiney they are plastic, if they are dull then they should dissolve. The reason (asked below in a comment) why she didn't look at them is because steri-strips are considered "paper stiches". If they were removed they could have caused at the least minor trama to a large skin tear. I am an LPN, BTW. Wounds are are one of my favorite things <3

And my question about DS is: How exactly do you know when he has reached his cognative age? Could you think he reached it at 12 (example) but could he just progess beyond that at a slower rate? How do they decipher the specific cognative age? Thanks for taking questions!

JaybirdNWA said...

Great post. As a parent of a child with Ds for 3 months, I feel honored and privileged to have this little boy entrusted to me. Beautiful post. Thanks for sharing your heart. These children, just like our other children are a gift from above.

Anonymous said...

Hello,
I have just found out that our new and only grandbaby is a downs syndrome baby. I said all the wrong things and I cried. All day I cried alone. Until I figured out that I was not crying because the baby has a disability but because of how society views these kids and all of the hurdles he is going to have to jump. It will take him much longer to do things that other kids never even work up a sweat over. He is the most beautiful baby ever, and downs syndrome or not he is ours. Thanks for being here to allow all of us who are new to this game to share and to know that there are others in this boat and we are not out on the sea alone.

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