Wednesday, January 9, 2008

"I'm so Sorry your Son has Down Syndrome".......

(If you are looking for the Wordless Wednesday post, scroll down to the previous post)

Over the past little while with Rhett's health issues, I have had the chance to meet alot of people in waiting rooms at the Doctor's office's and just out in public in general. The past few days I have been reflecting on some of these conversations, and thought I would pass some of these thoughts on.

The most common thing I hear when I run into an old acquaintance on the street is:

"Oh I am so sorry he has Down Syndrome, that has to be so hard."

No, really the diagnosis of Down Syndrome is not an issue. In fact this child is one of the strongest, most amazing people I have ever met. He may be a bit delayed in a few areas, but he is more than I ever dreamed he could be. He is smart as a whip, and as strong willed as they come. Contrary to popular beliefs.....ahem, stereotypes.....

Children with Down Syndrome are not always happy.

Rhett will do what he wants to do when he wants to do it. No amount of coercing and bribing will get him to do something he does not want to do, and he will tell you that he doesn't want to do it. This two year old knows the word "no" just as well as any other two year old, and he is not afraid to use it.

Oh, and when he is mad, the whole neighborhood knows it.......just as when he is laughing the whole neighborhood knows as well.

Another thing I have heard thrown around alot is:

"He's really cute for having Down Syndrome........"

What, so if he was a typical child, he would be ugly?

I know that people mean this as a compliment, but it still bothers me to no end. This is probably the one phrase that gets to me so bad I can't stand it. Have you ever heard that we were all made in His image? So if these children who look "different" as so many call it, are considered perfect in His eyes, then who's to say that God doesn't have almond shaped eyes, a gap between his toe, or brush field spots in his eyes? Seriously, do we know? Because I think these features are everything that makes my son absolutely perfect in every way.

Deep, no?

I also have gotten into many a conversation about Rhett's medical condition, and this is the one thing that I want to make crystal clear.

90% of Rhett's medical conditions have absolutely nothing to do with him having Down Syndrome. Let me go through some things.

1. The Heart Defect: Children with Down Syndrome are more likely to have a heart defect, in fact about 50% of them do. Rhett actually ended up with three of them. He had a complete balanced AV Canal, a VSD, and Pulmonary Stenosis. With that being said, the mortality rate for a child without Down Syndrome with these same defects is around 30%. The mortality rate for a child with Down Syndrome is only 3%. Yes, they do have these defects more often, but they also recover from them better and tolerate the surgery better than a typical child. I remember one of the nurses in the PICU after his surgery telling me that they are always really tickled to find out that their heart patient has Down Syndrome, because it generally means that they are going to do great.

2. The Intestinal Defect: About 50% of children with Down Syndrome also have intestinal defects. Rhett was no exception to this either, although we did not find out that Rhett had his until he was over a year old. He had a Morgagni Hernia. The hole was present from birth but went undetected until his intestines actually got caught in the hole and pushed their way up into his chest cavity. This was actually a huge blessing, had he been born with the intestines in the chest cavity he would have been a very sick newborn. Him being over a year old, and much bigger gave him the opportunity for his body to handle it. Again, children with Down Syndrome tolerate these surgeries much better than a typical child.

Now, with that being said, Rhett has many other medical conditions. These other conditions stem from his overdose. Not from having Down Syndrome. His Chronic Lung Disease, and Pulmonary Hypertension are all from his aspiration pneumonia that developed after he was overdosed, and had CPR. We had just fed him an 8 oz bottle of pediasure, and as anyone would do if they were receiving chest compressions, he threw up. The doctors and nurses were all so frantic on getting him back that there was not much that could be done. The throwing up was the least of their worries at that time.

His Nystagmus is also from the overdose, and the lack of oxygen, or maybe even the extreme amount of drug that he was given. Who knows. We don't know for sure yet, but we think that the lack of walking has to do with the nystagmsus too. But then there is his right side that drags like crazy....and I'm not even getting into that today.

I know many people who tell me that their children with Down Syndrome are the healthiest child in their family. They fight colds better, and they don't get them as often as their other kids. I am sure the same would be true for Rhett if he didn't have so many other underlying issues.

My point is, is that our trials have nothing to do with Rhett having Down Syndrome. The Down Syndrome in itself has been a major blessing to us. We have learned so much from him, and he is so amazingly perfect, I just can't even begin to explain it.

Don't be sorry for us, because we love him to pieces, and wouldn't have him any other way.


RK said...

Bravo, and well said! I can't applaud loudly enough.

Kaden's mommy said...

Like the above comment, that was very well said. I understand exactly where you are coming from. It is good for you to be able to say such things not only on Rhett's behalf but for yours as well. Way to go. Amy

Sara said...

You are so awesome!

Michelle said...

Hear yah. I could have written a great deal of this. Primarily what bothers me is the "I am so sorry," or the "oh, hard for you." Um, it isn't hard at all. And Elliot, too, has medical issues so very unrelated to his Ds. Just blessed with more I suppose. Wouldn't change him for the world. And very perfect just being "Rhett."

Love you.

Michelle said...

Amen to that!

Kari said...

This sounds like something I could have written!! My fav I have heard many times is "drum Roll" OH HE DOESN'T HAVE DOWN SYNDROME VERY BAD UGH UGH UGH Go get em girl educate advocate and then educate some more "banging head against wall is optional"

Marla said...

this is a great post. I can relate to getting annoying comments or questions. We get weird ones like this when people find out she is autistic with chromosome disorder. Believe it or not some ask if the chromosome disorder can be fixed. Many say, "wow. You would never know since she is so pretty." ugh. Since the additional chromosome disorder some say, "oh good. At least now you know it is for sure not your fault." are you kidding me? I am always shocked. Always.

Pam said...

Ah yes, the infamous, "Oh, he doesn't have DS that bad, you must be so relieved!! DOH!!!

Oh, and the times I have been asked if he will ever be cured so that the DS will go away. Again, DOH!!!!

I don't want it to go away, I like him just the way he is THANKYOUVERYMUCH! :)

Irishcoda said...

This is an excellent post! People who don't know better say some of the stupidest, insensitive things! Rhett is adorable, does he have red hair? The only place I've seen that name before is Gone With The Wind. Thanks so much for visiting my blogs, I'll be back to visit again :)

Shannon @ Gabi's World said...

Beautifully said. Often I tell people that I wouldn't have it any other way, too. I really think people say those things because they don't know what else to say.

Gabi's heart defect is more common among the general population. It's not usually a heart defect associated with T21. And even her baby sitter has it, but her baby sitter required 2 surgeries and Gabi only needed 1.

Childlife said...

Oh, I'm so glad you commented over at my place on WW or I might never have known about your delightful blog!

I really get where you are coming from on this post. Our oldest was born with a rare birth defect and has been through 23 surgeries. Before her surgeries, she had a very large mass on the right side of her face and neck. You wouldn't believe some of the comments we've had from total strangers. Even now we get questions and comments about her scars and her asymmetrical smile (residual nerve damage following surgery). I get weary of the world's standards of perfection and I spend many hours in prayer over the day that it will begin to matter to our little girl.

Rhett is an adorable little angel and I am so glad he has such a loving mommy! I'm off to add you to my blogroll : )