Tuesday, October 30, 2012

If I Could Change Something...


I haven't been posting about Down syndrome on my blog this month but I have shared things on facebook.  The month is wrapping up and I wanted to share this post with you:


Today will be my last post about Down syndrome for the month.  But I won't stop advocating for my son, not ever.  If I could change anything about Down syndrome it wouldn't be to change Bennett and make him like all other "typically developing" kids.  Nope, we like him just the way he is.  But it would be to change how the world views him.  How people perceive the diagnosis of Down syndrome, how people treat people with Down syndrome, how people make fun and say hurtful things.  I would change it so that everyone would see Bennett how we see him.  And I hope by advocating for him others will come to see that.

Thanks to all our amazing friends and family who do see Bennett the way we see him and love him for just being Bennett.


Monday, October 29, 2012

Girl's Day At The Pumpkin Patch...

Hard to believe October is coming to an end already!  We had to get in the annual pumpkin patch visit!  So with an invite from a friend that was hosting an event we decided it would be our last chance to go and it wouldn't be right without a real visit to get pumpkins.  Only Bennett was still sick so it was just me and the girls this year... 





My big girls!

Happy Fall!

Good Heart News for Bennett!!

So incase you didn't know, Bennett had open heart surgery when he was 10 weeks old- he was barely 10 pounds and it was by far the scariest thing Mike and I have gone through together-okay well, Ainsley's birth was high up there as well but open heart surgery on a baby is pretty darn scary too.  But since then we take Bennett once a year to check on his heart because with the type of surgery and heart defect that he had, there is often minor leaking in the mitral valve of the heart.

So every year I of course get a tad bit anxious but honestly, Bennett has been very healthy and gives me no reason to think anything is going on but you just never know.

Last week we went in for his yearly visit and the cardiologist was so impressed with how everything looked!  He called it a "near perfect repair" (B's surgery was done at CHOP in PA and then we moved and we see a cardiologist at Duke in NC) and said in another year or so we could go to every other year! He really couldn't believe how nice everything looked, including his scar.  He said there was very little leaking and gave him a clean bill of health as far as his heart was concerned.


Here he is waiting for his echo.  You can see his 4 inch scar if you look closely.  


Of course later that night Bennett came down with the Croup-ugh!  We've had strep throat and croup since starting preschool but I know that school usually comes with exposing kids to new germs.  He's slowly getting over croup-it's now just a really bad cold {I think} and I feel terrible that there is not much I can give him for it;(


Trying to feel better.  

Hope all of this clears up before Halloween!

Monday, October 8, 2012

Bennett Goes On A Field Trip!

Well, Bennett has been in school for a month now and I think it's taken him a while to adjust to his new schedule, but he's finally coming around.  It's a whole new world to him.  He went from being with his mommy 24/7 to going to school and staying from 9:15-3:45, where he eats there as well as naps, receives his therapies, and then rides back home in the "cab".  (The school provides transportation back and forth but it's not a school bus, it's actually an SUV with car seats and 2 adults are on board.)

Anyways, this week his school went on their first field trip of the year-to the farm!  So here are some pics of Bennett on his very first school field trip....


He was excited to run around when we first arrived and eagerly pointed out the tractor that would pull us on the hayride saying "tacker, tacker".

Happy Bennett on the hayride, at first...



And then Maaad Bennett when it started getting too bumpy;)  The guy honking the tractor horn didn't help either!


The girls are tracked out of school this month so they got to go along as well.  They love seeing all of Bennett's school friends!


Fun on the tractor!


Until big sister came to join him.

Not so thrilled when it was time to sit down and make butter.
But sweet hugs from his sweet teacher Mrs. Caroline made things better;)
All in all it was a great day!  I just love his little school and all the things they are doing for the kids that go there. In a few weeks they'll go to the State Fair for another field trip but we'll be out of town for that one;( 

We're so thankful that Bennett has the opportunity to be a part of such a wonderful school!!



Wednesday, October 3, 2012

What I Wore Wednesday....

It's WIWW!  I think I missed the link up but moving on...

Well this week it's slim folks because I either got rained on or it was just one of those days and taking a picture of myself was the last thing on my mind but I've got two for ya...

Church
Shirt:  Ann Taylor Loft (hard to see but it's got a fun ruffly collar) got this several years ago when I was a pharm rep...in other words when I had to dress up every day for work.
Sweater, Pants, Belt and Shoes:  Target (of course, right?)
Necklace:  Local shop
Bracelet:  Target


Shirt:  I have no idea- it's a weird brand but it's got this cool lace detail around the shoulders that I love. Got it several years ago.  
Tank:  Target
Purple skinnies:  Marshalls
Converse:  Marshalls
Necklace:  Vestique
Have to say because I went to a college (East Carolina) that has the colors purple and gold, it's easy for me to put purple and yellow together without even thinking about it.  Go Pirates!;)

So I can't wait for next week because it's finally supposed to be cooler down here and I can actually wear some fall clothes without sweating to death!

Until then... 

Tuesday, October 2, 2012

The Future...

October is Down syndrome awareness month and I thought I'd share with you one of my very first awareness posts- written 3 years ago!  My how things have changed as far as what the kids are doing but the message of the post has not changed.  We're still not in control and we don't know what the future holds...


October, 2009

The Future...

Yes, it's something we all think about from time to time or maybe for some, all of the time. Questions we may ask ourselves: Where will I be 10 or 20 years from now, what kind of job will I have, what will my family be like? When you have kids you of course think about their future as well as yours. But when you are told you will have a child with special needs, it is often the very first thing you think about. 

Don't know why but for some reason it's all I could think about when we first found out. When I got that call from the genetic counselor on December 26th, 2008, telling me that our baby did indeed have Trisomy 21, I went to my room to cry and all I could picture was a man with Down syndrome in the grocery store, bagging groceries. And all I could think was this will be my son, the grocery bagger. Just being honest here. This was my picture of Down syndrome. A random man in the grocery store was really my only experience so this is what I claimed for my son's future.

So why is it that I assume so much and automatically put limits on Bennett? Why do I assume Ainsley and Harper will go to college and have a great job and a beautiful family but for Bennett I assume he won't go to college or get married or have a great job? Every day I see a video of someone with Down syndrome either getting married, driving a car, getting crowned Prom King, swimming across the ocean. Why do I put these limits on Bennett? Why is it when you are told you will have a child with special needs you automatically assume they won't amount to much. Why does society assume they won't amount to much? No one knows what the future holds.

And why is it that I look down on a job such as bagging groceries for a living? That person is happy, helping others and contributing to society. If that's what Bennett ends up doing, what would be so bad with that?

I can't tell you how many times I've read about people just finding out their child has Down syndrome and their first concern often is: Will my child live with me for the rest of his/her life? I've thought of it too. When I was pregnant I thought how will Mike and I ever go on a vacation by ourselves when the girls are off and married and we still have Bennett? There I go again, assuming away.

I think through this process thus far I have really learned to take things day by day. I cannot focus on a future that is not in my hands. I've learned I cannot put limitations on any of my children, I cannot assume they will do this or that or they won't do this or that. Again, it's letting go of that control I, and I think many parents try to hold onto that control so tightly. 

We are not in control. Simple as that.

It's very nice to just let go of the assumptions in life and focus on today. Today Ainsley is a happy 4 (almost 5!)year old that enjoys school and dance and playing with her sister. Today Harper is a fun loving 2 year old that is learning to talk more and use big words like: cinnamon roll and rhinoceros {so cute to hear her say these by the way}. And today Bennett is a cute, almost 5 month old and he is learning to swat and grasp at toys that dangle above him, roll both ways and makes us smile bigger than we've ever smiled just by seeing his sweet face. Today we are simply living for today and not focusing so much on tomorrow.