Please write Gov Beebe of Arkansas

I am encouraging everyone to write Governor Beebe at http://governor.arkansas.gov/contact/index.php. Please include in your letter that this baby boy is in Arkansas Children’s Hospital.  Also include that fact there is a DNR that was placed by the adoption agency and that a DS adoption network has already identified multiple families that are willing to adopt this child.  In the interim while adoption issues are worked out, this child needs a guardian ad litem appointed to protect him.

Any letter to the governor should also be cc'd to the hospital personnel below. This should get the hospital's attention immediately that a full scale blitz may be coming their way so the baby will receive ULTIMATE great care at that point, right?  The hospital main line and they said to send emails to info@archildrens.org but list out the recipient’s names in body of email.

Jonathan R. (Jon) Bates
President, CEO, and Director
Arkansas Children's Hospital

Dan McFadden
Director of Communications
Arkansas Children's Hospital

http://definitions.uslegal.com/g/guardian-ad-litem/

“Please, don’t Let me die” - Baby Doe

Last Night, Friday night, I am home after a week of traveling.  On TV is the Boise State vs Fresno football game.  My three boys are sleeping and my wife decides she better turn in as we both know at anytime Shane or Wyatt (or both) will wake up again.  A friend sends me a message as she is traveling with her family and is having a problem at the hotel where they are staying.  I am the worldly traveler after all. I feel good, relaxed and nearly ready for bed myself.  I am having a pretty good evening. 

Then something happened on my way to bed.  I turned on the computer and read a post about twins that were born.  Born at 37 weeks, one baby was apparently healthy and had just gone home with his new parents.  The other, born with Down syndrome has serious medical complications and is fighting for his/her life. This baby is not going home and has no home. This child was left behind, not wanted and with a Do Not Resuscitate (DNR) order. Guess what?  Going to bed would be delayed as I spent the next hour or so trying to find out more about this baby.  I, along with others, began posting this story on line, on web sites of Down Syndrome Associations and The Children’s Hospital.  This poor baby needed help and it was life or death.  The hope was to get this information posted ASAP in hopes of finding a family that may be able to help and advocate for this baby.  Before I finally fell asleep, I received a reply from a family that might be able to help.  By morning, The Down Syndrome Community was responding in force.  The word was getting out and many were talking about this situation and spreading the news in hopes of saving this baby.  I also know other families have expressed an interest in advocating and even adopting this child.  This story will not end today as this process can take time and can’t be resolved with one phone call.  As I write this today, we all need to continue to pray that this child continues to receive the medical treatments necessary for life.  We need to pray that a family may become involved in the medical decisions that will be required and adoption happens quickly.

Personally, I know how devastating it can be to have a child that is sick, in need of medical care and advance treatments that deal with life threatening conditions.  I have two boys that are still going through some of this.  I get it.  I know the shock associated with this and my wife and I cried long and hard after Shane and Wyatt were born.  We needed to process what happened and the impact this would have on our lives.  Our story has been told so I won’t retell it, but this is what I do know.  Life isn’t fair and sometimes life throws you a curve ball when you are expecting a fast ball.  I also know that people deal with issues differently but death for a baby doesn’t have to be a first and only option.  I also know the fight for life that both my boys had in them from even before they were born.  They wanted to live!!  I do realize that babies sometimes die or difficult decisions at times need to be made concerning life or death but to simply allow a baby to die as the first and only option is just very sad to me.  This child, like Shane and Wyatt and so many others deserve a chance at life.  Maybe, just maybe if we asked this baby what should be done the response might be “Please, don’t let me die”.

50 Shirts from 50 States - UPDATE

I am writing my next blog about the Mile High Down Syndrome Association but before I post it I have decided to provide an update on the Shirts that I have received.  Often emails are sent to me asking if I have one from this state or that or about an organization and a particular walk.  As of today, November 19, 2010, I have shirts from eleven different states representing thirteen different associations. 

Here is the list:

States; Kansas, Massachusetts, Pennsylvania, Ohio, Wisconsin, Indiana, New York, Delaware, Arkansas, Colorado and Michigan.

Associations; Down Syndrome Guild of Greater Kansas City, Massachusetts Down Syndrome Congress, Eastern PA Down Syndrome Center, Down Syndrome Association of Central Ohio, Down Syndrome Association of Wisconsin, Down Syndrome Family Connection, Down Syndrome Aim High Resource Center, Down Syndrome Association of Greater Cincinnati, Down Syndrome Association of Pittsburgh, Down Syndrome Association of Delaware, Down Syndrome Connection of Northwest Arkansas, Mile High Down Syndrome Association and Michiana Down Syndrome.

Again, thank you to everyone who has sent a shirt.  I wear them often and can’t wait to write about the all the great Down Syndrome Associations.

I have received a number of emails asking if I will also accept shirts from outside the USA.  The answer is YES!!  Also, I am interested in shirts from any event, walk, team or fundraiser.  Please include some information about the event and I will write it up.  If it would be easier, send me a contact number and I will call you before writing about your event.  I find this fascinating and I am so interested in what is happening to drive awareness.  I think we can learn from others and share ideas.  Most important, we can continue to advocate for Down syndrome and special needs. I really believe that as more people read about what you’re doing the better off we will all be.  I recently mentioned the Buddy Walk to a friend and they thought that maybe this had something to do with dog walking event.  There are so many people that still need to hear from us.  Please let me know if you are finding this beneficial or share with me your thoughts and suggestions.

My goal in 2011 is to collect at least one shirt from all 50 states.  I also want to collect a shirt from every walk and from every Down Syndrome Association.  I then want to walk a walk in all 50 states; I know this may take a few years to complete.  Please invite me, I AM ON A MISSION!!

Please feel free to contact me at ericwaxy@ptd.net

Eastern PA Down Syndrome Center

http://www.epdsc.net/

A few weeks ago I had the opportunity to walk in my very first Buddy Walk.  This weekend I proudly wore the shirt from this walk, although I admit that I have worn this shirt often.  It was also this shirt that inspired my 50 shirts from 50 states campaign.  In today’s blog I will introduce you to the Eastern PA Down Syndrome Center (EPDSC) as well as sharing some personal thoughts about the people we have met from the center.

The EPDSC is located in Trexlertown, PA.  This Lehigh Valley based organization’s mission is to equip families and individuals with Down syndrome with the latest medical advancements, social, emotional and educational support in order to maximize each individual potential.  The Center’s medical tram is lead by Medical Director, Don Levick, M.D., MBA.  Dr Levick has been caring for children with Down syndrome and their families since 1982.  Dr Levick along with Dr Renee Marrow-Connelly, Dr Scott Rice and Occupational Therapist Anita Ellsberry provide comprehensive medical evaluations for individuals with Down syndrome.  This staff of physicians will provide both patient and primary care physicians expert recommendations regarding medical requirements and their therapeutic and development needs.

In addition to the medical evaluations, the EPDSC also serves as a community resource for families, service agencies, practitioners and to the general public.  Please contact the Eastern PA Down Syndrome Center at www.epdsc.net or (610) 402-0184.  If you have just received confirmation that your child has Down syndrome and would like to speak with someone, please contact their HOTLINE at (610) 432-3776.  This 501(c)3 non-profit organization with their medical services, advocacy resources, consultation services and social activities will continue to service Eastern PA and beyond for years to come. 

While navigating the web site, make sure to check out LOSE THE TRAINING WHEELS PROGRAM.  This 5 day camp was organized by EPDSC along with Dr Richard Klein, inventor of the bike used in this camp, was designed for Special Needs students to teach them to ride two wheel bikes.

Also check out the 2010 Holiday Party and if you will be in the Allentown, PA area on Saturday, December 11, 2010, stop in and visit with us.  All the details for this party, including date, time, place, cost and RSVP details are on line.  A special thanks to the Allentown Brew Works.  http://www.thebrewworks.com/.  Yes, Shane and Wyatt will be attending (health permitting) but more importantly, Santa will be there too. 

OK, now about the Lehigh Valley Buddy Walk.  What a great experience except next time I will wear sneakers instead of sandals.  The people we met are so special and really made us feel welcome.  My wife and I really enjoyed the interaction with the other parents and so many came over to us just to say HI.  We quickly realized that we are now part of a very special community.  I also want to say thanks to Karen Cimms and Bob Ford of the Times News who helped document our first walk.  Please check out the article; http://tnlife.wordpress.com/walking-a-mile-to-raise-millions/.   Yes, I am currently recruiting team members to walk with us next year so contact me if interested, LOL. 

In ending, Mary and I would like to say thank you to Bobby and Michele.  They were the first folks we met from the center shortly after our sons were born.  They made themselves available to us and often called to just say hi and to make sure we were OK.  This was a difficult time for us and thanks again for caring. 

Please feel free to contract me at ericwaxy@ptd.net

The next shirt that I will wear is from Mile High Down Syndrome Association.



The Waksmunski Family: I was tested.... and FAILED

The Waksmunski Family: I was tested.... and FAILED: "I was tested ……. And FAILEDLast week while on a business trip, I was sitting at the bar eating dinner and talking with this guy sitting next..."

I was tested.... and FAILED

I was tested ……. And FAILED

Last week while on a business trip, I was sitting at the bar eating dinner and talking with this guy sitting next to me.  We discussed our jobs, travel and sports and in particular the World Series.  There were a number of us, travel warriors, settling in for Game 1 of the Series.  Then it happened, out of the blue and totally unexpected, I was tested.

There we were, talking away, getting ready for the game and I hear this gentleman say “I will show you what a retard I am” as he continued to ask me a baseball related question.  The test…..  Here was a moment that I knew I would face someday.  Since the birth of Shane and Wyatt, after reading the blogs from other parents and after reading and hearing how truly offensive this word can be, I now feel differently about it and it was now my moment to react.  I admit, prior to my twins, I didn’t use the word (often) but had no reaction when others did. The test. 

This guy probably said this word before and this time was referring to him and did not use it to call out someone else.  It is the word; the R-word used anyway IS offensive.  It was now up to me to educate him on what this means to others.  It was my moment to talk about awareness and special needs, Down syndrome and maybe even what my boys have been through.  The ball was in my court, the test.  Maybe, this was my opportunity to eliminate this word from being used by one more person for ever.  Well, I said nothing.  I failed the test.  Yes, I felt my blood boil, yes it upset me and yes, shortly afterwards I left.  I said nothing.

I have pledged my life to being a force and someday a leader in driving awareness.  I have pledged to be a voice and to speak to the issues, educate and advocate for special needs and Down syndrome.  I realized this day that although I have come a long way since March there is still so much that I have to learn.  I also realize that many of you reading this would have reacted differently and would have said something.  This was my first opportunity and I didn’t handle it well and as I went to bed that night I felt as though I let Shane and Wyatt down, I let some of you down and I could not help but wonder what would Rosa Marcellino have said?    I will never fail this test again.

A few weeks ago my wife heard someone use the R-word and recently one of our nurses used it as well.  Both times, my wife politely said something to them.  She has always told me that she has never used the R-word and she will not let anyone say it without saying something to them.  She feels that we will always have to the spokesperson for our sons and what is right.  This can start with one word or in this case by eliminating one word.

One by one, person by person we can spread this message of awareness.  We will have good days and bad and some days we will wish we could have said something or did something differently.   OK, maybe I know that I didn’t fail the final test and possibly this was just one quiz in a series of quizzes.  I know my final grade will come long after I have left this earth but I do know the next time I will not let you down.