Day 31: Happy Halloween

Lucas wore his Toothless costume proudly during our mall outing for trick or treating on this soggy Seattle night. For the first time, he actually kept his entire costume on -- hood, wings and tail -- and showed them off with every "ooh" and "ahh" from the candy-dispensing retail staff. We in our Viking garb, flanking the pint-sized dragon, several mall goers asked to either take our picture or have their picture taken with us...the attention was unexpected. For future reference, get to the mall by 5 PM because by 6, the mall is packed and most stores out of candy.

Here's our toothy Toothless who had a night filled with treats!

p.s. we have a confession: we didn't make Lucas' awesome costume, as we had resorted to. Instead, at the 11th hour, I found someone on Etsy willing to turn it around in one day in order to get it to us in time to make Lucas' fantasy a reality. Thanks, Megan!

Day 24: How to Train Your Parents

Lucas was stuck on "The Lion King" for ages and we thought he'd never get over it, even months after he was banned from watching the movie (have you seen how violent it is? And what's with the Nazi references?). But alas, he has completely outgrown it. As a matter of fact, I reluctantly purchased a Simba Halloween costume which I had to return because he would have none of it.

Lucas continues to adore animals, especially those in the wild, which we support and encourage. That said, this summer friends introduced him to what has become his latest animated movie obsession "How to Train Your Dragon" -- in the last few weeks he's grown so fond of the movie that he decided this year's only acceptable Halloween costume is the loveable dragon "Toothless" or as he calls him "Toofess" -- if you haven't seen the movie, run don't walk to pick up the DVD...it's seriously that good and has a great message of coexistance.

As you can imagine, we've been searching high and low for a Toothless costume with no luck. In the meantime, inspired by Lucas, Tom and I decided to build on the theme and picked up Viking costumes, which we debuted at Tom's sister's Halloween party this past weekend. Here we are as an ax-wielding-pigtailed blond and a too-short-tunic-long-haired-wig-wearing brut...we were a riot and actually kind of frightening. But, I digress, with the clock ticking we've now given in to the only available option: make Lucas' costume ourselves! We will bring the little sewing talent we share to help our son live out his Halloween fantasy.

Isn't this what parenting is all about?!

Day 22: Take 2

Lucas' birthday celebration continued in Chehalis/Centralia to visit his Nanny, Auntie Obin, Uncle D and cousins, Kellen and Brendan. After a sleepover at Nanny's (who baked a tasty cake and cupcakes), Lucas loved blowing out his six candles twice and opening presents. On a chilly but somewhat sunny fall day, we all headed to one of Lucas' favorite spots -- Lattin's Farm -- to feed and pet the farm animals, run through the maze, and sample the apple cider. Daddy enjoyed the apple slingshot and even got close to the target.

Day 16: She Said What?!

My husband recently was with Lucas and my mother-in-law at her long-time neighbor and friend's house. The neighbor is a lovely woman, with a great sense of humor and not a mean bone in her body -- although Betty* is nearly 70 years older than Lucas, they happen to share the same birthday.

She hadn't seen Lucas in some time and was commenting on how big he's getting and out of nowhere she added, "he doesn't have much of that retarded look." According to Tom, his Mom was stunned and they were both at a loss for words. We know she didn't mean any harm, and honestly, she just doesn't know any better. As I mentioned to Tom, Betty is from a generation where its acceptable and common place to call people with Down syndrome "monogloids."

It's at times like these that we as parents realize how far we've come, but how far we still have to go. Tom made a decision in that instance to not try to teach an old dog new tricks, but instead to reserve and focus his energies on educating those coming up in the world and those who raise them. Words matter and they can hurt...and ultimately, every one of us has a choice to make in the language we use and who we choose to be in the world.

*Name changed to protect her innocence.

Day 15: Happy Birthday, Lucas!

Kicked off Lucas' birthday week with a small gathering, packed with BIG balloons and lots of love and joy.

Happy 6th birthday to my loving, happy, wonderful and wonderous little man. We are so lucky to be your parents. We look forward to seeing how you continue to amaze and inspire us.

Day 14: Full Circle

Tom's stepmom, Ann, was very gracious and asked both Tom and his sister, Robin, to choose a charity for gifts (in lieu of flowers) in memory of Tom's dad. Of course, we chose an organization that works on behalf of individuals with Down syndrome. It was obvious which one we would choose -- I was in the middle of blogging about this non-profit when I got the call about Ken's passing.

When Lucas was about 1 year old, I stumbled upon a group called the Down Syndrome Research and Treatment Foundation. They had a most radical and ambitious idea: finding treatments to improve cognition -- including learning, memory and speech -- for individuals with Down syndrome.

Since it was founded by parents of kids with DS less than 10 years ago, the DSRTF has become the leading private funder of some of the most cutting-edge research in Down syndrome cognition research. It is incredibly meaningful to have those who loved Ken and his family help support an organization that could have a direct impact on his grandson's life.

For as many wonderful, nobel organizations that exist in the US, words cannot describe what it means to us to be tied in such a personal way to an organization that could help fund a discovery that could so profoundly affect our son's quality of life.

Thank you, Ann, and thank you, Dad, and all who give in his memory, for this gift.

Day 12: Remembering Poppa Kenny

Last night while working on my blog post, we got news that changed our life. We learned Tom's father passed away, seemingly from a massive heart attack. At 63, he was too young and full of life (he'd add, piss and vinegar) to have his life cut short. We are saddened by the sudden loss of a beloved husband, father, grandfather and friend.

 

Kenneth Rhyneer (Ken or Poppa Kenny as he was known to his grandkids) was born in St. Louis, one of 10 kids. He served in the Air Force and then devoted a 45-year career to PPG, lastly as a supervisor -- Tom use to kid that his daddy really was a glass maker. He was married to Gwen in 1970, and later married Elizabeth (Ann) in 1990. Ken and Ann settled in Decatur, Illinois.

 

My fondest memories of Ken are from a few years back when we visited their home on Constant View Drive. The house itself is modest, but the backyard was recently selected to be part of a garden tour because it is incredibly spectacular. Ken and Ann poured so much love into the space, filled with blooming flowers, a koi pond, bird houses gallore, a variety of critters, a huge wood deck and a massive above-ground pool that made for perfect lazy, steamy summer days. They also built an expansive garden where they grew a ton of different vegetables, including a favorite of both Ken and Lucas -- tomatoes.

 

Here's how I will remember Ken: He loved driving his pick-up truck, so much so he drove it all the way from Illinois to Miami for our wedding. He enjoyed sitting on the back porch, smoking a cigarette and drinking his morning coffee. A favorite pasttime was watching baseball with his dog curled by his side. An avid fisherman, he passed this same love to Tom. He was a hard worker, devoted to his craft and his company. Always ready with a smile or laugh, he had a wicked sense of humor. He was very handy and could build or fix just about anything. Passionate about his garden, he spent hours tending to it, while picking and eating tomatoes right off the vine. He loved his family, especially the many grandkids who will miss his silly antics. He was kind and thoughtful...although he was a Bud Light enthusiast, he kept chilled microbrews stocked just for me.

 

We love and will miss him, and are comforted by many good memories.

 

Lucas and Poppa Kenny during our last visit with him and Ann, in October 2010.

 

Day 10: Countdown to 6

Last night, I finally created an "October" calendar for Lucas so we can countdown to 2 exciting days this month: 1) his birthday on the 15th, and 2) Halloween!

Today, he counted down to Tom, me and his nanny (on separate ocassions) that there are FIVE days left until his 6th birthday. We need to get our act together -- we have plans with our family for the following weekend, but will mark his birthday, this coming Monday, with a small gathering.

As for Halloween, Lucas can't decide on his costume...Simba won't due because he refuses to wear the head gear, so I'm not sure that the alternative (Curious George) will fair any better. We'll see how this pans out. He's more than excited about the notion of trick of treating!

Day 9: Shut it Down!

Before I say another word, this isn't about POLITICS!

It comes as no surprise that Ann Coulter tweeted the following:

“Been busy, but is Obama STILL talking about that video? I had no idea how crucial the retarded vote is in this election.”

Seriously..she used the word "retarded" in this context. I think the most conservative of Republicans would agree that Coulter loves to serve as a lightening rod for her party, but she's really gone too far this time.

I take great pride in having turned many a frequent offender of using that word into a disciple of the "spread the word to end the word" campaign. One person at a time. With all of us in the Down syndrome community (and disability community at large) rowing in the same direction, we are creating a shift in the use of the word (or lack thereof). Undoubtedly.

Unfortunately, there will always be people like Ann Coulter who don't care who they hurt at the expense of their agenda, and in her case, what she has to do to keep her shock status symbol. It's pathetic. Regardless of how many times we come up against ignorance, I'm convinced there are enough decent human beings in the world that we will eventually shut this word down.

I was inspired to go on my rant by my fellow blogger and friend, Lisa, who turned me on to this post by another parent in our community. It was the featured and recommended TODAY moms' blog article. Bravo, Dan! Don't miss it. Dad Demands Apology for Use of "Retarded"

Day 8: Dark Side of the Moon

For no apparent reason, Lucas dropped his pants at school today and mooned his class. Yeah, it happened. Needless to say, his teacher was mortified. Here's the thing: If Lucas was a typical child, it would be chalked up to being a 5-year-old, but because he has Down syndrome, everything is associated with his disability.

That sucks.

Our nanny then told us the same teacher (from his "self contained" class) told her "his parents want him to spend more time in the general education class, but he's just not ready." I can't begin to explain how that totally and completely frosts me. She's a new special education teacher who apparently believes and was trained that special education is indeed a place for kids with disabilities, instead of the more modern approach of it being a "service" that is offered to help support and encourage learning among their typical peers. Tom is calling the Ombudsman Office to seek counsel about what our recourse may be as we challenge the school system's mentality, while I seek help and guidance from other parents who have been there and done that in this school system as well as counsel of my dear friend, Michele, who is a champion and educator of kids with disabilities.

I see Lucas' future bright and full of possiblities. I see it clear as day. Those who know me know I'm not a "pie in the sky" kinda girl. I'm a realist, so my point is, this isn't wishful thinking (well, maybe a little), but what I know to be true in my bones, and what Lucas is capable of achieving for himself.

What I don't see is how we're going to get there...and that often scares me. BUT...we will press on and challenge every stupid ass preconception. How can we not? Lucas' life and future depends on it. Keeping my eye on the prize helps me find perserverance, strength and courage I didn't know I had.