My Little Homemaker....

Recently Bennett has been helping me a bit around the house...

Working in the kitchen.

A little dusting here and there.

Helping me straighten up.

He'll even pick up his own socks- he needs to teach his daddy how to do that;0

Yep, my little homemaker.

Now before you get all excited, Bennett did not pull up to those positions entirely by himself but it took minimal assistance so he's getting there!

I Knew.

This was a post I wrote last year and some have read it before. But I thought I'd share it because I can tell you until I'm blue in the face that having a child with Down syndrome can be great but learning of that diagnosis is not great. It's scary and sad and somehow I knew, call it mother's intuition but I knew.

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July 20th, 2009

As Bennett approaches 2 months and we've started the therapy, we've visited the cardiologist, I've spoken to the local Down syndrome center and we've let the diagnosis sink in now that he's actually here, I've been reflecting on the day my world was turned up side down, the day I knew my baby had Down syndrome. It wasn't the day I got the phone call from the genetic counselor about the amnio results. It was the very instant the doctor walked into the exam room just days before I got that call. The second I saw her face, I knew. I know I've written about it in my very first post but I've started to think about the people I talked to that day and all the hope they tried to offer me. And how everyone of them assured me that it was a false positive and that they had a friend that was in a similar situation and the baby turned out to be fine or there was a relative that had these results but their baby didn't have Down syndrome. I remember talking to my sister who said it was probably nothing and that the baby would be fine and to not get too upset since I didn't know for sure. But I did.

I remember getting the urgent call from the nurse telling me to come back and that they could get me in for an ultra sound because they didn't have a clear date as far as how many weeks I was and maybe I wasn't as far along as I thought(this can cause false positives) but I knew, I knew I was 17 weeks. I remember agreeing to all of these people saying, yes, you're probably right but all along I knew, I really knew I was the 1 out of the 1 in 10 chance that the doctor told me hours before. As the ultrasound tech looked at Bennett she measured things- everything so far was measuring at 17 weeks and my heart sank a little but then she said things like "oh, there's a nasal bone- that's good, heart looks good, from what I can see" and then she measured one of the femur bones and I saw 15 weeks pop up on the screen and my heart grew heavy because I knew this was a marker. Still she had hope in her voice "well, that can be a soft marker but it could be nothing". After all the hope everyone had given me that day and of course they meant well, I left knowing once again, that the baby inside me had Down syndrome.

As I drove home from the ultrasound I prayed and asked God to just give me peace. I had been crying for a good part of the day and my head hurt, my eyes were swollen and I just wanted peace no matter what the outcome would be in the next few days. And it was almost instantly that I felt this overwhelming peace. It's hard to explain. It was as if all the sadness and worry of that day left and all I felt was warmth and relief. Not that I didn't cry or feel pain in the days to come but for that time that I was alone in the car I knew that it was going to be okay whether the baby had Down syndrome or not. God knew that I was hurting and that I needed something right then and there that perhaps no human could offer.

Now when I look over the crib in our room and I watch Bennett as he sleeps, he is the most peaceful little baby. I get that same feeling of peace I felt in the car each and every time I look at him as if God is saying it's going to be okay.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."-Jeremiah 29:11

3 Lil' Pumpkins....

WARNING! THIS IS NOT A POST ABOUT DOWN SYNDROME! IT'S JUST A SIMPLE POST ABOUT OUR TOTALLY NORMAL LIVES AND WE JUST HAPPEN TO HAVE A LITTLE BOY WITH DOWN SYNDROME!;):)

Well... it's pumpkin patch season again!!! Oh, how I LOVE Fall!!! The weather during October up here is usually perfect-high 60's to low 70's and this weekend couldn't have been nicer!

On the wagon going to the pumpkin patch!

Harper couldn't wait to pick out her pumpkin!

As soon as we put Bennett down, the fussing and crying began. He didn't want to have anything to do with the pumpkins.

{But he does happen to look handsome here, if I do say so myself;)}

"Really mom...what are you trying to do to me here? Because it's not cute -AT ALL!"

Yes, it was nap time but really I think he didn't like the idea

of being out of my arms.

The girls were happy to pose though!

After pumpkin picking we enjoyed a carousel ride, a mini roller coaster, cotton candy, caramel apples and pony rides, of course! Such a fun day for the girls!

Until next year!

Brave Heart!

So most of you know that Bennett had open heart surgery at a very young age. But what you may not have known (unless you have a child with DS or you're in the medical profession), is that it is very common for kids with Down syndrome to have heart defects. Don't know why but it is. In fact, 40%-60% of infants with DS are born with a heart defect. However, most can be fixed with surgery or many may not require any surgery.

When we found out about Bennett having Down syndrome (through amniocentesis), we also found out that he had a heart defect (through a level II ultrasound) and most likely that it was an AV canal defect. Of course this was devastating at the time because we had no clue what it

meant.

Who are we kidding here? First of all, we had no clue about Down syndrome really, and throw a heart defect on top of that, well... let's just say we were in a very bad place emotionally.

Bennett did indeed have a Atrial Ventricular Septum Defect (AVSD or AV canal defect) which is the most common heart defect found in infants with Down syndrome and almost always requires surgery for survival {not usually immediately but eventually} . When this heart defect is seen on an ultrasound, it is a very hard marker for Down Syndrome- meaning, the chances are high that the child has DS. Of course babies can have an AV canal defect and not have DS but it's not extremely common.

Of course I went into research mode on the internet and found that his heart defect was very common among children with DS and it had a very high success rate with surgery. That did make me feel a lot better. It was still so scary, I mean REALLY scary but so many kids had it and were doing fine after surgery that I had to believe this would be our son as well.

So Bennett shares the exact same scar as many of his peers that have DS and it's kind of weird how it's just so expected and almost the "norm". Of course he has many friends with that extra chromosome that were not born with any heart defects too.

I have no idea why some are born with this and some aren't and I don't think it affects the way they develop either. Some kids with DS and a heart defect take longer to do things and some don't. Let's just say these kids are pretty resilient and for most, heart surgery is just another thing they have to overcome and they do!

Bennett's surgery was successful but sadly, as with any surgery, this has not been the outcome for all. And for those parents that lost their little ones at such a young age, during surgery or shortly after, I am heart broken, truly heart broken.

Ahh, that 21st chromosome has a way of pulling at your heart strings at so many different levels.

What If...

What if you fall madly, deeply, hopelessly in love with your new baby?

What if he is the most amazing human being you will ever know?

What if he makes you a better person?

What if he makes your other children grow to be better people than they would have been without him in their lives?

What if you fall in love with your husband all over again for the way he fathers Bennett?

These are the things that make me say "if I knew then what I know now". I look back on my worries while I was pregnant and wish I hadn't put so much energy into them.

This was a comment I received on my blog right before I had Bennett and I was writing about my "What Ifs". And it couldn't be more true! If I knew then what I know now- if someone could have shown me this picture and said "this is what it can be like", I wouldn't have worried so much about having a child with Down syndrome.

Because yes, there are hard days but the good days far outweigh the bad. Easily.

Siblings...

One of my big fears while we waited for Bennett's arrival was how it would affect our girls. I think most parents that have children with special needs as well as older children think about this. How would we do it all? Would the girls resent Bennett? Would they feel ignored?

Well, so far these girls have adjusted very well. I think it really comes down to how you approach it and making time for the other siblings. Yes, Bennett gets a lot of attention through all his different therapies but we try our hardest to make sure the girls are getting the attention they need and to make them feel just as special. Because they are!

They absolutely adore their baby brother though. And Ainsley is fully aware that he has Down syndrome. We've talked about it and while she doesn't really know what it all means, she does know that it means he needs to work harder on things than other kids and he'll need help doing them. And that it's okay that he can't do all the things other kids his age are doing because he'll get there.

Another fear I had and maybe this was just me but I was really worried that Bennett wouldn't look like us, his family. You see, I had about zero interaction with anyone that had DS growing up so I never saw the family that came along with the person. To me, many people with DS looked the same, I'm just being honest. But again, I never saw their family.

Well, I was wrong and worried for nothing! Because I happen to think {and I'm pretty sure I'm not the only one} that Bennett looks a whole lot like Harper...

Look how he just adores his big sister!

He also has her personality so far too!

I've really enjoyed seeing all the children, siblings and families on the other blogs I follow. I can see that each and every person with Down syndrome is unique, even though they share many of the same physical traits. They share their parent's genes though too, so yes, they look like them!

So the take away here is that siblings of children with special needs can either turn out to resent their "special brother or sister" or they can be enriched and learn so much from them. I hope my girls will be in that second group!

Oh and that people with Down syndrome don't all look the same!!;)

Blowing Stereotypes Out of the Water!

"All people with Down syndrome are always so happy!"

Oh really?....

Not this kid with Down syndrome!

In fact, most of our friends that have met Bennett will confirm that this is how he greets you-with a suspicious pout and sometimes you'll see a swift swat from his arm! This is almost always followed by his charming little smile though;)

This is exactly how Harper was- her "rude" face was how she typically greeted excited strangers and even friends. You won't see my kids giving out adorable smiles in the grocery store line unless they really feel comfortable with you.

Okay, I'll admit that Bennett was an unusually good infant and if that was because he was our third, his personality or something to do with the 21st chromosome, I gladly accepted it! This stereotype doesn't really bother me because having a kid that never cries, whines or complains-sign me up! But I think the take away here is that people with Down syndrome have emotions just like everyone else. After all-

"They are more alike than different."

They can be happy, sad, mad, stressed and hurt.

Now for the most part Bennett is still super laid back and generally a really good baby but he's definitely not happy all of the time!

And when he's upset, you can be certain that big sister 1 or big sister 2 will be right there to try and make it all better.

{I hope you realize you're getting sneak peeks of our Littlest Hero's photo shoot!!}

It's In The Eyes...

Another physical trait seen in some individuals with Down syndrome is brushfield spots. These whitish spots occur in 35-78% of newborn infants with DS. Although some suggest up to 90%. But they can occur in infants without DS too. These spots are harmless and do not effect vision as far as I know. They are also more common in people with light colored eyes.

This is Grady and he has beautiful brushfield spots, oh and he also happens to have Down syndrome. These white spots are seen in the colored part of the eye. You can visit Grady's blog here. {Thanks Erin for letting me share this pic!}

So does Bennett have brushfield spots?

Nope.

This little guy has "milk chocolate", well maybe more like "dark chocolate", brown eyes, just like his daddy! I don't know that I've seen brushfield spots on darker eyes.

And perhaps the most obvious physical trait seen in almost all people with Down syndrome is the upturned, almond shaped eyes. You can see that almond shape clearly in the picture above of Bennett. The cutest thing, I think with these eyes is when he smiles really big, they squint up, real small and happiness, literally bursts from his face...

See! Can't ya just see the happiness in the air all around in this picture?!;) I could just grab the happiness with my hands!

LOVE IT!

Little Hands...

I love this picture! {Carissa Dawn Photo}. Bennett has very small, chubby hands-which I love as well;) and this just comes along with that extra chromosome. Another common trait in people with Down syndrome is a Simian Crease 0r one solid line across the palm....

Again, people without Down syndrome can have a simian crease.

Does Bennett have this?

Nope.

In fact his pediatrician was surprised that he didn't when he examined him at the hospital after he was born. So does it mean when a person has some, all or none of the physical traits of DS that they have more Down syndrome or not as much?

No.

You either have it or you don't. Bennett has the standard and most common form of DS which means there is an extra copy of the 21st chromosome in every single cell of his body. He has some of the physical characteristics but not all. But he still has the same amount of DS that another child with all of these characteristics does. Of course there are varying levels of functioning but we won't know where Bennett falls until he's older.

A crooked pinky finger is also a small marker on an ultrasound for DS and I can't tell if Bennett has that because his tiny little pinky isn't even long enough to be crooked! LOL. I love his small features, I really do. He reminds me of a baby doll, of course when he's 4 it might not be so good if he still looks like a baby doll but we'll love him just the same if he does!;)

This Little Piggy Went To Market....

I thought I'd take a slightly different approach this year towards Down syndrome awareness month and share some little facts and interesting tid bits here and there.

So... many children with Down syndrome are born with "sandal gap". This is a slight space between the big toe and second toe. Does Bennett have this?

Yep. It's not very noticeable in this picture and in general but he has it. It can be a small marker for various trisomies on an ultrasound, Down syndrome being one of those. It was not seen on his ultrasound though.

People without Down syndrome can have this trait too. Actually many of the common traits that I'll share can be seen in people without Trisomy 21 (Down syndrome). More of those in a few!

Oh and by the way, the first picture is actually Bennett and our awesome photographer from the Littlest Hero's project took that. I'll be sharing those pictures soon!!

Being Different and "Smelling the Roses"...

Today I took Bennett to a free introductory class at the Little Gym! I had him try the "Bird" class which is for ages 10 months-18 months. I knew they'd probably run circles around him and wasn't sure how that would make me feel but I want him to see other kids doing things so that maybe it will motivate him to do the same, eventually. I also want him to be around "typical" kids because my hope is that in a few years he'll be in regular kindergarten, fully included-that's my hope. Plus he needs to be around other babies just for the social aspect!

So they told me that he would fit in well and that there were some none walkers and walkers and runners. Well, I think everyone was walking and many were running circles around him but it really didn't bother me.

I've come to realize that Bennett is Bennett and he has Down syndrome, big deal!

I do wonder what the other parents thought though. Like did they think: "Oh, that poor mom, she has a little boy with Down syndrome" or "Wow, that's great to get him in this class" or maybe they didn't think anything of it. Either way it was a good chance for us to socialize with other babies and possibly bring some awareness to Down syndrome. The teacher learned that babies with DS are super flexible-not a very good thing although it looks neat;), as well as that most don't walk too much before 2-{don't worry I didn't start spatting out DS facts it just came up when she was asking questions about him.}

So as a slightly perfectionist, impatient, fast paced mommy, I've learned so much from Bennett in these short 16 months with him that I'm not sure I'd ever learn without him.

Mainly, that he is just another boy that loves to play, do back flips and have fun with other kids. And also that

it's totally okay to be different! Really, it is!

It's okay to slow down and "smell the roses" in this fast paced culture we live in.

You notice a lot more and take in so many wonderful things when you just slow the pace down and enjoy the little things in life. Besides, the world would be dreadfully boring if we were all the same.

By the way, we signed up for the classes and will return next Saturday for more fun!