Family Resemblances

Thursday, 21 November 2013

I've always thought that Lucas looked quite a bit like my brother Michael when he was a toddler.

I don't have a lot of nice, clear quality pictures of Michael from years ago, but here are a couple.

 A sampling of pictures during Lucas's toddler years...

But then Joe's mom shared this picture of Joe as a kid.

My first thought, "Wow that could be Lucas!"

Kayla and Lucas both thought this was Lucas, "Who am I playing with?"

I showed this to my mom and she said, "Where was this taken and who is Lucas with?"

My sister realized this was an older picture and therefore not Lucas, but her response was, "That's not Lucas! That's Michael!" Ha!

And seeing how I think he resembles my brother, he must somewhat resemble me too when I was a baby.

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The Day After

Friday, 1 November 2013

Another October has come and gone. Another 31 for 21 finished.

Thanks to everyone for participating in the annual blogging challenge for Down Syndrome Awareness Month.

I know some people express that it gets harder every year to blog every single day in the month of October; especially about Down syndrome specifically. I know it feels like you've come to a point where you've said (blogged) all there is to say about Down syndrome.

But please don't be discouraged. From the beginning (Tricia) said that every single day didn't have to be a post that was Down-syndrome related; and that still stands today. The point of the challenge is just that - a challenge to yourself to blog every day. If you miss a few days - it's ok! - the blog police are not going to come get you!

And even if you feel like you've said all there is to say - just remember, you never know who all is reading  your blog. Every day there is a possibility of a new family getting a Down syndrome diagnosis and they might stumble across your blog. You never know who you are reaching. You never know who might come away from your blog that day with a better understanding of life with a child with Down syndrome.

Maybe it's time to change the name to National Down Syndrome Awareness and Acceptance Month. I know there is some consensus in the Down syndrome community that awareness has been raised and we don't need to raise anymore awareness; that people are aware and what we need to be advocating for is acceptance.

I agree about acceptance, but I'm not so sure the intentions behind awareness have been fully met. Yes people are aware of Down syndrome. They know of Down syndrome, but there are still stereotypes. There are still misconceptions. There are still negative and false assumptions about people with Down syndrome.

For the new parent receiving the diagnosis of Down syndrome are they really aware of what that means today? Or do they still have an outdated image in their mind of what Down syndrome was years ago?

Has the right kind of awareness been raised outside of the community? The kind of awareness that paints a more accurate picture of the capabilities of people with Down syndrome? Or are people still not aware about Down syndrome until they have a reason to be - until they have a loved one with Down syndrome in their lives.

I don't claim to have all the answers, but I don't think we can totally stop the campaign to raise awareness either. I think we need to expand that campaign from awareness to include acceptance though. Hmm... should I start a change.org petition to get "Acceptance" added on to that monthly designation?

Since today is also the day after Halloween here are a few Halloween pictures of The Supergirl, The Pirate, The (not-so-bandwagon) Red Sox fan, and The Civilian!

 

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Royal Fairytale Ball

Sunday, 27 October 2013

We have taken the kids to a few plays at Creative Spark Center For the Arts and they have really enjoyed them. They are close to the action and the cast involves the crowd in parts of the play.

I saw they were having a Royal Fairytale Ball and the whole family was encouraged to dress up. I knew this was something my kids would enjoy so I signed us up. I only had to buy one item to complete our Royal Family transformation.

I was a queen. I wore the red bridesmaid dress from my sister's wedding and pinned my kids' dress up king/queen robe to my dress and wore the red headband crown from Kayla's outfit.

Kayla was a princess in a red and gold gown that my mom got her last year for Christmas. My dress matched hers almost perfectly. She wore the tiara that she wore when she was a flower girl in the above-mentioned wedding.

Lucas wore the knight cape with his shield and sword that he got for his birthday last year. He thought it was pretty cool that he was the only knight. (considering there were only 2 other boys, one a toddler and one a little older, odds were in his favor!)

Joe could have went as a king, but he opted for the jester hat that I picked up for him at the store. Every royal family needs a jester.

Joe wasn't alone in his jester-ness!

Twirling and dancing (notice she couldn't keep her tiara on as referenced in my sensory post; nor the necklace she tried on at home or the one they gave her there.)

Protecting the jester and chasing the Giant from Jack and the Beanstalk

Having her palm read.

Also, this family won the best dressed royal family award. One of my kids will be attending a free summer class next year!

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Running The Air Force Marathon

Wednesday, 18 September 2013

Research Down Syndrome funds and supports scientific research at leading institutions that are studying the basis of intellectual impairments in Down syndrome. One of the ways they are doing this is with the RDS Runners program. They are charity sponsors with various marathons around the country.

Last year my husband, Joe, completed his first marathon -the Air Force Marathon - as a runner for RDS. He also completed the Disney Half Marathon in Jan. Joe will once again be running in the Air Force Marathon on Sep 21st and raising money for Research Down Syndrome.

Down syndrome is one of the most common genetic conditions, but one of the least funded in the NIH. Research in Down syndrome isn't just DS-specific but extends to research connected with Alzheimer's and leukemia.

There are several current research studies happening now that are focusing on the why and how having the extra chromosome causes delays for people with Down syndrome; including how to 'turn off' the extra expression that happens in specific genes.

Research like this could possibly lead to medical therapies for intellectual disabilities to help improve memory and cognition which will allow people with Down syndrome to be more independent.


If you are able to donate to Joe's Crowdrise page for the marathon it is much appreciated!

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Lucky Number Thirteen

Monday, 16 September 2013

Who says 13 is an unlucky number anyway? Poor number 13 - always getting a bad rap.

13 is just another number, and today it marks 13 years that Joe and I have been married!

Charleston Restaurant Week ended yesterday. SpiritLine Cruises dinner tour participated in CRW. When we moved here in 2010 Joe mentioned wanting to book a dinner cruise for our anniversary but he wasn't sure if I would want to do that or not what with my motion sickness and all!

This year I decided to give it a shot and booked our dinner cruise to celebrate our anniversary. It was a bonus that this past weekend was CRW!

So we got all dressed up and enjoyed a 3 hr dinner cruise on Saturday night. I have to say the 3 hours passed by quicker than I thought it would ... and happy to report no motion sickness! For the most part I didn't even feel the boat move.

Happy Anniversary to us!

 

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Blue Ridge Mountains

Thursday, 18 July 2013

A last few random pictures from our vacation 2 weeks ago. We had a wonderful time staying up in the Blue Ridge Mountains in Sapphire, NC and being able to travel throughout the area there.

Mining for gems...
 



Some of the wildlife we found during our stay. Actually, on one of our drives I did spot a small black bear on the side of the road. I think I might have just freaked everyone out a little bit when I started yelling, "A bear! A bear! There's a BEAR right there! Look! On the side of the road!! Joe turned around so I could try and get a picture of it, but a truck coming the other direction scared it further back into the forest. It was still pretty neat to see!







They enjoyed being able to climb on this old train, pull the bell, and holler out "All aboard!"





Lucas found a hiking stick, and Kayla found a leaf as big as her face.

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Double Digits

Monday, 15 July 2013

Yes, today we have reached double digits in the age of one of my children.

Kayla has reached her first decade. That magical age when you can say you're TEN! and it sounds so much older. Is this the official age of the 'tween'? Do I really have a 'tween' now?

Ten pictures from Kayla's first year ... along with hopes, dreams, and wishes.

 I don't know what the future holds, but I hope it's bright and full of adventure.

I hope you know how very much you are loved by your family and feel their presence surrounding you ... even those family members who are no longer with us.

I hope you forgive me for my faults and mistakes that I have made, and will make, as a mother. Parenting is hard and it's a constant and changing learning experience. But I wish for you to know that I'm always trying my best and how very much I love you.

I hope you know you will always be the apple in your dad's eye and realize how much he loves you and will always protect 'his baby girl.'

I dream that you will find your passion in something you love and you will pursue it with all of your heart.

I hope you grow up with a positive self-awareness and acceptance about who you are and love yourself. 

I dream that you will be an outgoing self-advocate, speaking up for yourself and others. I dream that you will be self-confident, brave, kind, happy, and caring.

I hope that along the way you will be surrounded by true friends who will help you grow, and guide you. I dream that you will find acceptance amongst your peers.

I wish for you to grow up not knowing hate, or ugliness, or prejudices, or discrimination. That is probably unlikely though. You will encounter difficult situations and people. That's part of life. But I wish for you to handle adversity with your shoulders back, head high, and a smile on your face.

My dream is that you will follow your dreams and that we can help you be successful in your endeavours. My dream is that you will be happy in life and enjoy all life has to offer. I hope you reach for the moon, because even if you miss, you will still be amongst the stars.

 Happy birthday my beautiful ten year old!

 

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