Friday, May 30, 2008


The face of Down syndrome is changing thanks to young people like Brett. Please take a couple of minutes to watch him shake his money maker and speak on behalf of people with disabilities on "So You Think You Can Dance?" ROCK ON BRETT!

Tuesday, May 20, 2008

Friday, May 16, 2008

Lucas is Official

Lucas was baptized on Saturday, May 10th at the Prince of Peace Catholic Church in Miami. It was an intimate ceremony with only a handful of family and friends which of course included Lucas' Godmother/Madrina, Silvia, and Godfather/Padrino, Armando -- Sandy's long-time, very dear friends. The priest, who we had never met before, did a fantastic job of making it seem as if though we all belonged in this peaceful, quaint church. Despite his thick accent, Padre Geraldo spoke eloquently about this first rite and wove stories in Spanish which added charm, humor, and personalized the experience for us all.

Lucas was such a big boy and behaved so well during the ceremony -- his only complaint was when cold water was poured over his head -- but can you blame the kid? The priest handled him so tenderly and many of us were moved to watch Lucas lock eyes on him when he was anoited with oil and then how Lucas' whole face lit up at the end of the blessing. Mami would be so happy and I know she was there in spirit. Armando summed it up was one of the most spiritual experiences I've had in a church in a long time.

We were very blessed to be able to share such a beautiful day and special occasion with everyone. A great big thanks to Padrino and his peeps -- Abuela Adita, Tia Haydee, and cousin Heidi -- for orchestrating the event and for all the support in making it possible. Here are a few photos of the festivities.

Wednesday, May 14, 2008

Launch of the Congressional Down Syndrome Caucus

I borrowed this post from Jennifer Graf Gronenberg's blog -- thanks, Jennifer!

Congresswoman Cathy McMorris Rodgers shared these notes from the recent launch of the Congressional Down Syndrome Caucus. Last year, Congresswoman Rodgers gave birth to her son, Cole, who has Down syndrome; as a result, she has become a fierce advocate for people with Down syndrome. I don't want to get my hopes up, but it seems like an exciting time for our community. Read on.

“The launch of the Congressional Down Syndrome Caucus last week was a big success! The co-chairs are Rep. Pete Session (TX-32), Rep. Patrick Kennedy (RI-01), Delegate Eleanor Holmes Norton (DC-AL) and myself. I recorded a video statement regarding the Caucus and its goals that I sent to you just before Mother’s Day. If you haven’t seen it yet, click here.

Eddie Barbanell, who has Down syndrome and starred in the movie “The Ringer,” shared a rap that was remarkable! He reminded us that people with Down syndrome are dedicated, hardworking and valuable. He encouraged us to emphasize potential and acceptance. People with Down syndrome, he said, belong in the mainstream—the mainstream of life. They have the same needs as anyone: respect, love and camaraderie. He challenged Senators Obama, Clinton and McCain to join his campaign!

Stanford researcher Dr. Bill Mobley gave a PowerPoint presentation on his research about Down syndrome (click here to download that presentation). The brain is a function of neuronal circuits. With Down syndrome, not all circuits work well. It’s not that these neurons do not exist; it’s just that they do not work well. There’s an imbalance in excitation and inhibition circuits. The inhibition, the calming down circuit, is too strong thus limiting learning and memory. He challenged us to approach Down syndrome research as a special, biologically unique opportunity as breakthroughs in Down syndrome will explain the cause of the same diseases in people who do not have Down syndrome. “We’re not just asking what our country can do for people with Down syndrome; we’re asking what studies of people with Down syndrome can do for our country and the world.”

We also heard from the National Institute of Health regarding its 10 year research plan for Down syndrome. (Click here for that release.) I’m especially encouraged to see the coordination and emphasis on cross disciplinary institutes — National Heart, Lung, and Blood Institute supporting studies of the genes that contribute to heart malformations (it’s interesting to note there is no documented case of a person with Down syndrome having a heart attack) and sleep apnea; National Cancer Institute investigating various types of leukemia; National Institute of Aging targeting ways to treat Alzheimer’s; National Institute of Allergy and Infectious Diseases involved in immune response; National Institute of Mental Health focusing on treatment for mental disorders including autism, obsessive-compulsiv e disorder, depression, and psychosis; and the National Institute of Neurological Disorders and Stroke (NINDS) looking at how the brain is developed and affected). Congress requested this plan in 2007. I want to get more information.

It was exciting to see the politicians, researchers, and Down syndrome community coming together to coordinate and advance our shared goals.

--Cathy McMorris Rodgers

Sunday, May 11, 2008

Happy Mother's Day!

On Mother's Day, here's an oldie, but goodie -- I received it today from two dear friends who walk this same path with me...Happy Mother's Day to them and you.

The Special Mother by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of children with special needs. Did you ever wonder how mothers of children with special needs are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Matthew."

"Forrest, Marjorie, daughter, patron saint, Cecilia"

"Rutledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles, "Give her a special needs child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a special needs child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary.

When her child says 'Momma' for the first time, she will be present at a miracle, and know it!" When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see...

ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Friday, May 9, 2008

Roscoe AKA "Bad Dog"

Roscoe is a big trouble maker...he loves to bark at everyone and chew on everything, especially paper, Lucas' toys, and, his favorite, my sandals! He also loves to terrorize our 17-year old kitty, Groucho (who does a fantastic job of defending himself) -- Tom likens them to Garfield and Odie.

Despite all the puppy behaviors, we're making good progress on teaching him manners -- he's learned to sit and ask to go out; we've even been bold enough to let him roam the house for a couple of hours unsupervised. He sleeps peacefully in his crate every night, is usually well behaved when we take him out to dinner, and loves his nightly walks around the neighborhood.

Roscoe is already more than twice the size since we adopted him, weighing over 12 lbs. He'll be 6 months on the 17th. Lucas and he love playing together -- Lucas takes Roscoe's security blanket and it's a challenge to keep him out of his food bowl, while Roscoe is constantly stealing Lucas' toys and tearing up his books (bad dog!). Lucas and he are learning to play "fetch" and it's pretty cute watching Lucas throw the ball/stick and Roscoe chase it down. Although slightly nutty, we're a happy family. Isn't our trouble maker cute (notice how comfy he looks on our couch)?

Thursday, May 8, 2008

Resting Comfortably

Here is Lucas with Daddy before they took him away for surgery at Miami Children's Hospital. The procedure lasted about an hour and everything went as planned. Hours later, he's still under the influence of anesthesia as well as Tylenol with codeine -- poor baby was fussy when he woke up briefly to chow down a little food earlier tonight. I'm staying home with him tomorrow -- the doctor said to expect him to be feeling much better and nearly 100% recovered by Saturday. He's due for a follow-up with the urologist in two weeks.

Tuesday, May 6, 2008

Mouseland, etc.

It's been an exceptionally busy time in the Rhyneer house. Sandy spent four days in Walt Disney World and is now a proud graduate of the Disney Institute -- it was a very cool training where we learned so much about the Disney culture and how we can apply their "best practices" to our hospital/cancer center. Graduation included a certificate and coveted Mickey ears -- not to mention, a surprise appearance by the Mouse himself! Even Lucas got a piece of the action. We stayed on over the weekend and enjoyed Lucas' 2nd trip to the world of the mouse -- he rode "Dumbo" and the carousel for the first time, with repeat visits to Pirates and Haunted Mansion. We went on safari at Animal Kingdom and Tom and Sandy enjoyed the thrilling "Expedition Everest" -- the newest Disney-style rollercoaster. A good time was had by all.

Lucas is headed for urology surgery on Thursday as an out patient and will spend Friday recouping at home. Although he'll be under general anesthesia, we've been told it's a routine procedure and he will recover quickly.

On Saturday, Lucas will be baptized thanks to Lucas' Godfather and his aunt, Haydee, who connected us with the church, Prince of Peace. Sandy's mom would be proud and happy to know Lucas is joining the Catholic Church. Lucas' Godparents are Sandy's dear friends, Armando Valdes (Mandy) and Silvia Eguaras. Look for pictures of Disney and Lucas' baptism soon.