The Waksmunski Family: "Words Do Matter"

The Waksmunski Family: "Words Do Matter": It was almost one year ago when I wrote the blog “I was Tested …. and Failed”. I was on a business trip in Toronto and while engaged in co...

"Words Do Matter"

It was almost one year ago when I wrote the blog “I was Tested …. and Failed”.  I was on a business trip in Toronto and while engaged in conversation with another traveler, I heard him say the word “retard”.  I was disappointed with myself because I didn’t say or do anything.  I promised myself afterwards that I would never allow this to happen again.

Since then, when I hear the R-Word, I speak up.  I have had the opportunity to speak with co-workers, friends, called a radio station after hearing the word on air and even called a MLB Baseball team after hearing a ballplayer use the word.  If you say it and I hear it, I am going to say something.  This vow that I made to eliminate the word also brought me to a one on one meeting with PA House of Representative Doyle Heffley earlier this year.  I believed, and still do, that the langue in PA of MHMR, Mental Health and Mental Retardation, needed to be changed.  I wanted Representative Heffley to know that while we needed and appreciated the services that the state provided for both Shane and Wyatt, I was having a difficult time with the R-Word being included with the services provided.

This morning, I received a letter from Representative Heffley informing me that he was wholeheartedly supporting PA Senate Bill 458, which amends the Public Health and Welfare Act to change the wording of mental retardation to intellectual disability.  This bill unanimously passed in the Human Services Committee meeting on Wednesday, October 5^th and is expect to move right along.   I am thrilled that this word will no longer be included in the name of the department that provides services to my boys and to so many others.

I would like to personally thank Senator Dinniman for introducing this bill and Representative Doyle Heffley for not only remembering Shane and Wyatt but for taking the time to meet with me and for supporting this bill. 

http://ericwaxy.blogspot.com/2010/11/i-was-tested-and-failed.html

http://www.pasenate.com/?p=4833

The Waksmunski Family: Chapter 4 - Counting on each Other

The Waksmunski Family: Chapter 4 - Counting on each Other: "The Times news has been part of our family since the birth of Shane and Wyatt. In yesterday edition of the paper this story was published, ..."

Chapter 4 - Counting on each Other

The Times news has been part of our family since the birth of Shane and Wyatt.  In yesterday edition of the paper this story was published, Chapter 4 which speaks to Mom and Dad's releationship and how we deal with the stress of raising two kids with special needs.  I hope others find some of the advice offered helpful.  Enjoy!

http://tnlife.wordpress.com/chapter-4-counting-on-each-other/


ericwaxy@ptd.net

Work, Play and Milk

Every Monday, I can usually be found at home in my office answering emails, on conference calls or working on project.  I office from home and my wife knows that while I am in the house, I am busy and can’t be disturbed unless there is an emergency.  If I haven’t been seen in awhile she will make me something to eat which I appreciate.

Today, Jesse had one thing on his mind and that was to play with his Papa.  Every opportunity he had, he asked, “Papa, wanna play with me?”  I was so busy today and after I finished with my office day I needed to travel and for a meeting tomorrow in Boston.  It was a crazy day.  Then it happened, in attempted to buy some space and finish, I made a promise to Jesse.  It was just before 3pm and I had a conference call at three that was very important.  I told him that I needed to take a call and when I finished, I would play with him.  His reply was simply “OK Papa.”

My call lasted about an hour.  I remember at one point during the call thinking how quiet it was outside the closed door.  Then the call ended and I said “Good Bye” and at that exact moment, the office door flew open.  There was Jesse.  I said, “Hey buddy, what’s going on?”  He replied, “Papa, I was “considering” you.”  I knew what he meant and thanked him.

“Are we going to play now?”  Well, I made a promise and was not about to break it and proclaimed that it was Playtime.  I told him that I would meet him in his room but first needed to check on Mommy to make sure she was OK.  This is when I found out that Jesse sat outside my office door, listening and waiting to hear the words “Good Bye” signaling the end of my call and the start of our playtime.  He waited and was very “considering” (considerate). 

Playtime was a blast and I bet everyone heard us downstairs.  We were laughing and just having fun.  After awhile, I told him that I had to leave for work.  Jesse asked me, “Do we need money?”  I told him that I work so that we could have money.  I told him that I work so that we could live in our house and so that he could have all the toys he has to play with.  Jesse just sat there looking at me with a real serious look on his face and asked, “Papa, do you work so that I will have milk to drink?”

With a smile and holding back tears, I answered, “Yes Buddy, I work so that you have milk to drink.”

After hearing this, Jesse got up and walked over to me, and gave me a hug and kiss.

Obviously, there are many reasons why I have to work but for Jesse, I guess it means he will have his milk. 

Shane and Wyatt’s Award Winning Story

The Times News has been with us documenting Shane and Wyatt’s journey from shortly after their birth on March 6, 2010.  A few weeks ago Karen Cimms and Amy Miller, both writers with the Times News won First Place in the Pennsylvania Associated Press Awards; one for Enterprise Reporting and one for Features.  Karen was also awarded Second place for Series Writing by the Pennsylvania Women’s Press Association, Best of the Best Awards in the Daily News Writing Category.  Not to be left out, Bob Ford, Photographer, with the Times News was awarded Second Place from PAPME, Pennsylvania Associated Press Managing Editors Awards in Photo Story.  We are so proud of the work they have done and are thrilled with their awards on this story.  The story, “Down Syndrome – A Family’s Journey” can be viewed at: http://tnlife.wordpress.com/. 

Our relationship with the Times News began shortly after Shane and Wyatt were born when I meet with Karen to explore the idea of sharing our journey.  I think she was interested and took the idea back to her Editor and Publisher. At the time, I only had a few nonnegotiable items and they were, be honest and accurate in reporting the story, educate others about the issues or medical conditions and advocate support for those who were also dealing with stressful medical issues.  I believe we have hit the mark with the chapters already written and will continue to do so in the chapters still to come.

Recently, Shane and Wyatt had the opportunity to visit the Times News in person and as a family we thanked some of the people responsible for helping us document this journey.  I want to again thank Fred Masenheimer, Publisher, and Bob Urban, Editor in Chief for all your support, a few extra papers and for making “Down Syndrome – A Family’s Journey” a permanent link for all those who visit the Times News web page.  Also, thank you to Dave Rowe, Graphic Designer, for making the story look so good in print and Len Alabovitz, Plant Manager, who  manages the press and for making sure the extra papers found their way to us.  Amy Miller had the responsibility for writing about the medical issues and procedures for the story.  Thanks Amy for interviewing the doctors and surgeons, even if when I was late in providing you their names and contact information.   I also hope you learned a thing or two about G-Tubes and Fundoplication Surgery.   

Thanks again to Karen for putting our thoughts and experiences through this journey on paper.  You are a part of our family now and we appreciate all the work you have put into documenting this for us.  I only have one question for you, “Why did your interviews with me last about 15 minutes and your interviews with Mary would run for hours?”  I guess you enjoyed her conversation better than mine?  LOL.  Bob, Thank you again for photographing the journey.  I know most of the photo’s you take will never be seen in print but we appreciate you spending so much time with us either at the hospital, Buddy Walk, Shane & Wyatt’s Christening or just around the house documenting a normal day.  Also, not a day passes without Jesse asking about you, as he says “Bob is MY friend.”

Thank You to the Times News and for being a part of “A Family’s Journey”.

You can be part of a Miracle

This Monday, June 6^th, Shane and Wyatt will turn 15 months old.  (This Monday just happens to be my birthday as well and before you ask…. 47).

I am writing this because I am asking for your help while so many other children NEED your help.  Right now through tomorrow, Sunday June 5^th at 6pm, The Janet Weis Children’s Hospital at Geisinger is holding its annual telethon.  I am asking that you please make a donation in honor of my sons, Shane and Wyatt Waksmunski.  My boys, and especially Wyatt, are miracle babies and this is your chance to be part of a miracle as well.

Both boys were born on March 6^th, 2010 and were born ten weeks early.  Both have spent so many days, weeks and months in the hospital during the past 15 months.  Both Shane and Wyatt, still today are fed daily by a machine through a feeding tube, both have struggled through surgeries, infections and have had so many setbacks since birth that I have lost count.  Yet, through all the challenges and obstacles, their will to live has been truly inspirational.  However, that will alone isn’t enough and without The Janet Weis Children’s Hospital, they would not be here today.

Today there are currently 81 children in the hospital and Wyatt is one of them. A few months ago we shocked to discover that he was born without a diaphragm on his left side.  Wyatt is currently in PICU (Pediatric Intensive Care Unit) after his third surgery on his diaphragm in the past few months.  His recovery is taking a little longer than we were hoping for but “Super Wy” continues to fight and is improving on his timetable.  As if surgery wasn’t enough, he is also in isolation as he is suspected to have a virus.   

Let me ask you, if your child was sick, wouldn’t you do everything in your power to help them, no matter what?  I have been living everyday of the past 15 months with this exact thought.  I will do anything and everything to provide for my boys.  This also includes raising money for the Janet Weis Children’s Hospital and the Children’s Miracle Network.  I believe in the miracles and I believe in what they have been able to do for my kids. 

Even the smallest donation can make the biggest difference.  Your donation will help Wyatt, my boys, the 80 other children in the hospital and all those who will come after us.  Shane and Wyatt are Miracle Children and with your donation YOU will be part of the miracle as well.

Please make a donation by calling 1-800-322-5437 or by visiting http://www.geisinger.org/cmn/.  Please make your donation in honor of Shane and Wyatt Waksmunski, PO Box 214, Lehighton PA  18235.  (The address is so that they will send us a card telling us about your donation). 

Also, if you live in the viewing area of WYOU, central and NE PA, I will be appearing live on the telethon on Sunday, June 5^th at 1:30pm to present a check that will represent the donations made during the past year in honor of Shane and Wyatt.  We raised almost $2500.  THANK YOU!!!

Again, thank you for your support and your donation.