Monday, June 20, 2016

A Tale of Two Dads

My dad is courageous, kind and resourceful, and brought me to America where I have lived a most privileged life -- one not possible in Cuba. With his 5th grade education, he worked all kinds of jobs and always provided. Unlike many of his counterparts, he wasn't overbearing and instead let me choose my own style, including the length of my shorts, and supported most of my adventures. I still recall the drive to catch a ride to NYC which changed the course of my life. Only in his old age has he become sentimental, so I was surprised when the man of few words said he believed I could accomplish anything I set my mind to and held me as I cried and flew away from the nest. I am externally grateful for his unconditional love. and the matter-of-fact, common sense wisdom he freely offers. Feliz Dia de los Padres, Papi! 

When I was 19 and working at the University of Miami, I met who would come to be affectionately known as my Gringo Dad, Richard Urbano. Many people don't know that I actually knew Rick before I became friends with my BFF Jenni, his daughter. Rick and Terri did all kinds of things to help me get through college and to NYC, including providing shelter to me and my cats! Rick has always been a constant guiding source of wisdom, love and comic relief, especially in the face of major life challenges. Given their life-long dedication to the field of disabilities, since Lucas' birth, Rick and Terri provided a level of listening, understanding and compassion I don't have anywhere else -- it has been instrumental in shaping who I am as a parent and an advocate. Thank you for the many ways you continue to listen, care and support me through this wild journey. There aren't enough words to express my love and gratitude, but here's a start. Happy Father's Day!

Monday, March 28, 2016

Play Unified: Inclusion at Heart

"What is Unified Sports?" from the Special Olympics website:

"Dedicated to promoting social inclusion through shared sports training and competition experiences, Unified Sports joins people with and without intellectual disabilities on the same team. It was inspired by a simple principle: training together and playing together is a quick path to friendship and understanding.

Our opponent is intolerance. Only shoulder-to-shoulder, as teammates together, can we defeat it."

When Lucas was born, I started navigating the world through an unfamiliar disability lens, which meant I had to evaluate and determine what programs I felt were in Lucas' best interest. The ultimate goal is not just creating a more just, accepting and inclusive world for him to live in, but one where he can rise to his full potential and become independent. That may be a tall order, but hey, I'm an optimist and there are and have been others who share the same philosophy.

From the get go, I never wanted Lucas segregated, but instead, for him to exist in the "real world" fending for himself among typical peers. At only 3 months, he joined an early intervention program with a blend of typical and special needs infants. When other babies were walking independently, Lucas shuffled from one piece of furniture to the next to simulate walking -- there was a look of determination in his eyes and a desire to keep up. I knew then that modeling was key to his development in every area and I was hooked on inclusion.

Up until now, I had the opinion that Special Olympics was "nice" but not the right place for Lucas because it was segregated. Nonetheless, I started inquiring about having him become an athlete because he's now old enough and has become a crazed soccer fan all on his own -- I'm an admittedly fair-weather Sounders fan, and enjoy the event as much for the game as for the socializing. 

This past week, there was a "Play Unified" training camp and I liked the sound of it, especially because it would feature a few Sounders alumni and thought Lucas would enjoy it. My mind was blown and my opinion of Special Olympics catapulted! I was so impressed and heartened to see the tremendous amount of effort and resources being poured into this concept of having people with intellectual disabilities and those without playing together in a fully inclusive setting. Now, we're talking! Equally, I was excited to see Microsoft backing the initiative. Watching Lucas play with pro athletes and a mix of typical and others with ID was truly a highlight of my year so far! I couldn't wipe the grin off my face. Here's to the beginning of Lucas' career as a Special Olympics athlete!

Saturday, March 19, 2016

The Bitch is Back...

After quite the hiatus, I've decided it's time to get back to one of my favorite outlets...writing about my life with my awesome son. So much has happened since my last post that it'll make my head spin (and yours too) if I get into too much of it. The last year though has been particularly trying as I decided to divorce my now ex-husband after a long and bumpy few years of trying to hold on. I wish it'd been a different ending, mostly for Lucas' sake as he already has a lot to contend with, but sadly, this is the way things needed to go down, and hopefully, we will all be better off on the other side with some love, understanding, (a lot of) patience and time. That's all I can muster for the moment, but I remember what a wonderfully cathartic space this was for me for many years of Lucas' life, and I expect that to be the same from now on.

Thursday, November 1, 2012

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!

Thursday, October 25, 2012

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'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?!

Tuesday, October 23, 2012

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.

Tuesday, October 16, 2012

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.

Monday, October 15, 2012

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.

Saturday, October 13, 2012

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.