Spread the Word to End the Word -- 3.31.09

On March 31, join youth and actor John C. McGinley in a day of awareness for America to stop and think about our use of the r-word. Our language frames how we think about others. Help eliminate the use of the r-word in everyday speech. Stop yourself, stop your children, and stop others from using the word "retard" and "I am so retarded". Each and every time I tell someone not to use the word in my presence because I find it offensive, I am quickly met with "I'm sorry" and "I didn't mean any disrespect" -- I know that, and if I can get that one person not to use the word again, or at least to be more mindful the next time he/she uses it, I will have succeeded in my mission.

I've been told by some that we're trying to tackle the impossible because "retard" or "retarded" has just become too acceptable a term in our everyday language...and I always say that I'm sure some people said the same thing about those who confronted the use of the n-word and every other popular put-down phrase that came before/after. What I realize is that those who want to continue to use these terms freely must be met with more passion, dedication, and commitment to stopping its toxic spread. Pledge to stop the use of the r-word and encourage inclusion of all with disabilities.

The Waiting Game...

What we thought would be a fairly routine visit to the cardiologist last Monday, turned out to be yet another twist in Lucas' heart journey. Lucas has what's known as an atrial septum defect (ASD) which is a hole between the upper chambers of his heart. Because there is no place to anchor a device (which would be a much less invasive, simple procedure), for the past year we've been told Lucas will require open heart surgery.

During the ultrasound, the cardiologist and the tech agreed the hole is tiny. So tiny, in fact, that Dr. Pereira, who has been following Lucas since birth, wants Lucas to have a sedated echocardiogram on May 7th. She will then present Lucas' case again to the review committee (cardiologists and surgeons at Miami Children's) before moving forward with surgery on June 5th. Dr. Pereira hasn't encountered a case like this and is now unsure whether surgery will be required to repair the 2 mm hole (a little more than 1/16 inch). As she put it, if the hole was anywhere else in his heart, he wouldn't ever need surgery. She is now favoring a "wait and see" approach.

As she explained it, typically, an ASD causes "overflow volume" to the right side of the heart which makes it swell and can lead to arrhythmia and pulmonary hypertension. However, in Lucas' case, the ASD doesn't seem to be affecting his heart's function at all. Because of the location, the hole won't close on its own either.

Our plans remain unchanged -- I've requested a two week leave from work and Tom's mom is visiting from Seattle to be here as well. Although we'd so much prefer not to face open heart surgery, we also want to make sure whatever decision we make is in Lucas' best interest. If we're putting off the inevitable, then we'd want to move forward as planned. Even if surgery is the "right" answer, is now the "right" time?

World Down Syndrome Day

March 21 (March 21=3 copies of the 21st chromosome) is World Down Syndrome Day and we are celebrating our beautiful son and all of the wonderful people we've met on our journey.

Lucas is nearly 2 1/2 and is growing and learning more each day...he is in an early intervention program at the University of Miami's Debbie School -- although I have many gripes about Miami, the one irrefutable thing is that Dade County has the ONLY center-based early intervention program in the country, and for that, we have been truly blessed. At the Debbie School, Lucas is one of the most popular and beloved kids -- his therapists are constantly gushing about him and we are so very proud of our inquisitive, loving, funny young son. Lucas is now enjoying puzzles, dancing, the pool, and playing with friends, he also still loves "reading" as he makes us read several books each night. His signing vocabulary continues to grow...probably about 80 words including just about every farm and zoo animal...and he's using about 12-20 spoken words.

Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Individuals with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Those with Down syndrome have feelings just like everyone else in the population and experience the full range of emotions. They respond to positive expressions of friendship and are hurt and upset by inconsiderate behavior. People with Down syndrome date, socialize, form ongoing relationships and marry. The future is so very bright!

For more information about Down syndrome, please visit:

The National Down Syndrome Congress: http://www.ndsccenter.org
The National Down Syndrome Society: http://www.ndss.org
World Down Syndrome Day: http://www.worlddownsyndromeday.org/
Spread the Word to End the Word: http://www.specialolympics.org/03-31-09_Spread_the_Word.aspx

Happy Birthday to ME!

I had a really great birthday, especially since I got to spend all of it with my wonderful husband, and most of it with our little bean. My phone was ringing off the hook and my mailbox filled with emails from well wishers -- although it kinda sucks getting yet another year older (better than the alternative), it certainly makes you feel better to feel loved.

As for my day, after Lucas' visit to the cardiologist -- more on that tomorrow -- my sister met us for lunch and then she babysat Lucas while we went to a movie ("The Watchmen" -- not exactly a date movie) and then enjoyed a fabulous dinner out at the ever-popular Joe's Stone Crab on South Beach. The weather was perfect -- sunny and toasty. Tom says he thinks I had too much iodine (please don't let me be developing an allergy to shell fish!) because I kinda broke out in hives tonight, I hope benadryl does the trick. After dinner my sister hosted us for cake and ice cream...how sweet she was to switch the numbers around on my cake (look for the "24" below)...Lucas liked the singing, not to mention, the cake!

Avery's Surgery a Success

Avery is doing well and is out of the CICU -- HOORAY! If you're interested in learning more, here's the update in Jennifer's own words. Thank you for your thoughts and prayers.

Prayers for Avery

Tomorrow, six-year-old Avery undergoes open heart surgery to repair an atrial septum defect -- a hole between the upper chambers of his heart. Heart defects are incredibly common in kids with Down syndrome, found in about 50% of the population. Avery is the son of my dear friend, Jennifer, who I met online and was lucky enough to spend some time with at the Down syndrome conference in Boston last July. Jennifer is the author of "Roadmap to Holland", chronicling her first two years as Avery's mom -- Avery is a fraternal twin and while he has Down syndrome, Bennett does not. The Groneberg family lives in beautiful Montana and Jennifer is one of the most eloquent writers I've ever had the pleasure to know...finding this amazing community of moms who champion their children's abilities and share the good, the bad, the ugly with one another has been one of the greatest gifts of my personal journey as Lucas' mom.

The family learned at Valentine's that Avery would need surgery to repair the ASD so they're in Seattle at Children's Hospital now. If you're reading this, please take a moment to say a prayer for Avery so he has a successful surgery, all goes exactly as planned, and he's on a quick path to a full recovery. Beyond having son's with DS, Jennifer and I will join the "heart moms" club -- for mom's whose children have had open heart surgery.

MARK YOUR CALENDARS: Lucas is scheduled for open heart surgery to correct an ASD (just like Avery) at Miami Children's Hospital on Friday, June 5th...it seems like an eternity away and yet each day it comes closer and looms bigger. I've been told it's the "easiest" of open heart surgeries to perform, but, hello....it's OPEN HEART SURGERY on a toddler!!! Most of the time, I'm numb to it because I just can't start processing all the angst I have around coming up against another unknown -- like we did with Lucas' diagnosis at birth. We go on Monday, March 16th, for a follow-up echocardiogram and ultrasound to check the teeny tiny hole, which if left uncorrected could lead to pulmonary hypertension.

Our time will come soon enough, so for today, I would be thankful if you'd keep Avery and his family in your thoughts.

Jungle Island Adventure

It was time for more animals -- especially since Lucas can't seem to get enough of his "Signing Time" DVDs featuring zoo and farm animals (thanks, Aunt Robin!) -- so we ventured to Jungle Island on Biscayne Bay. Jungle Island is home to the former "Parrot Jungle" so there are still many exotic macaws, some who've been around since the 1940's and they're a riot...they line two walkways and love to greet passersby and eat right out of your hand.

The favorite encounter was feeding baby kangaroos...hay que lindos! The South African penguins were too cute for words but we didn't get as up-close-and-personal an opportunity with them. And yes, that's Lucas kissing the kangaroo...