Category Archives: TAR Syndrome

Life has changed!

PSI’ve not done much blogging over the last few years as my life has been a bit of a roller coaster. Since marrying my husband in 2015 we’ve been trying to have a child. Well this dream has come true and I’m currently 27 weeks pregnant! However, it has been probably the most difficult experience in my life to date. The difficulty has occurred because of my disability and the ignorance the medical world has with disability.

I’ve been to countless doctors and had way too many tests. I’ve had clinics turn me away because of my low platelet count six months after I had told them about about my disability. I’ve had cardiologist tell me one thing and give a completely different message to my OB/GYN. I’ve also had labs tell me they could not do a blood draw for me because I don’t have arms and they can’t do out of my leg. That is just some of the medical ignorance that I’ve dealt with while trying to get pregnant.

Since getting pregnant my age and my disability have created some challenges with doctors. I’ve learned that local hospitals do not have platelets on hand. My doctors have been very concerned about my platelet condition. So I’m required to have my baby in Boston in order to be able to have platelets if I need them. I’ve come close to needing a platelet transfusion two already because of getting two colds this year but luckily  my platelet came back up. I still need to meet with anesthesiology to figure out IV access, medication and anything else that you usually put in a person’s arm during delivery.

Our little girl is doing great! She’s growing as expected and the doctors do not have any concerns about her. Every morning I wake up to my husband snuggling next to me putting his hand on my tummy. He waits for her to move. If he doesn’t feel her, she gets a few pokes to get her wiggling. Each time I get overwhelmed by the medical stuff I try to sit back and focus on her.

I’m so excited for this adventure that we are starting a couple and scared out of my mind. We’re about to be responsible for a little tiny human. It’s a bit mind blowing. I will also be a mom with a physical disability and there will be challenges to that.  But just like everything else I have ever done in my life I know I’ll be good at this one.  I have an amazing supportive husband right next to me.

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A new job, a book, and a wedding!

10616059_10152782372714073_7923268522615505755_nThe last 12 months has brought quite a lot of change.

In September 2014, I started a new job at the Northeast Independent living program. There I began to work with people with disabilities and it brought some of my personal life work full circle. I would receive referrals from the Massachusetts Rehabilitation Commission then I would work with the people on living independently in the community. This was one of many new transitions that I have been experiencing over the last couple months. As I settled into this new job I also was still settling in to my new home with my boyfriend and the new community we had moved into.

I continued to work on my book. This is been a childhood dream that I had been working on for about three years at that point. In October I finally pushed myself to get it finished. As many of you already know the end of October 2014 I self published my book on Amazon. It is called “The Impossible Only Takes a Little Longer: One Woman’s Story of Determination”. The support that I received with my self publication was amazing my job of two-month did a book signing for me. My social network of friends and professionals spread the word about my book. As the holiday season arrived many people were inspired by the book and bought it as a gift for other friends and family.

Last winter was very hard all the snow and cold kept me from going outside. Work was closed off and and I have a lot of fear about going outside as I wasn’t sure if I would slip and fall and hurt myself. I took the opportunity to learn new cooking and baking recipes. Then I got to work on getting my book into Kindle format. Within a few weeks I succeeded in getting my Kindle formatted book. This was exciting to me as I wanted to be able to have my book in at least one accessible format. As I’ve learned through the years that as much of the bookworm as I was reading a regular book was often difficult with my hand so close to my shoulders.Between my book being available in softcover on Amazon and then in Kindle I thought life couldn’t get any better.

Excited to be at Magika
Excited to be at Magika

February brought so much more transition by boyfriend and my dad started on our new kitchen that was promised to be accessible. The plans were exciting and the accessibility absolutely thrilling. Gone almost 2 weeks without a full kitchen my boyfriend says to me you want to go out to dinner tomorrow night. I quickly agreed and said as long as we can have vegetables. He smiled and said that is not a problem. The following night we went to my favorite restaurant Outback. Just before dessert he kneed down on one knee and asked me to marry him.

I was so surprised and so excited! The next some seven months would bring a lot of planning. We agreed to have a short engagement so on September 27, 2015 we married. It was the most beautiful day. I had long red dress my husband to be wore a kilt the colors of red and black. I walked down the aisle bagpipes and drums. A reception having elements from Princess Bride and Star Wars. It really was the most amazing day of my life!

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October 2015 brings one year since the publication of my book. It has been quite a year as you can see that from above. In my first year I sold 300 books some of that was online, book signings, and family or friend requests. In the next year I hope to get my book out more and use it a teaching tool at perhaps some of the schools. My story is similar to so many people’s stories out there with disabilities. In the sense that they struggled or continue to struggle each day. Society expected less from them and they were always surprised that person succeeded.

In a Book store near you!

Wow, “The Impossible Only Takes a Little Longer: One Woman’s Story of Determination” is now available at Magika in Salem Massachusetts!

About a month ago I had the opportunity to do a book signing and I have to say the weekend with absolutely amazing. I sold a good amount of books and met some amazing people from around the nation and the world. They were customers from three different countries and four different states. Who would have known that I would’ve met such a variety of people I hanging out in a store in Salem Massachusetts.

I’m thrilled to say that not only did I sell books, meet some amazing people, and network some business opportunities by my store is now available on the shelf at Magika! If you are a browser of books and love handle one before purchasing here is your opportunity. What better time than to visit Salem Massachusetts and by inspiring book for your friends and family.

Kindle Book now available!

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“The Impossible Only Takes a Little Longer: One Woman’s Story of Determination” by author, Sheila Radziewicz

The award winning self advocate and inspirational speaker, Sheila Radziewicz, writes from her heart sharing how she has overcome unimaginable adversity in her life. Highlighted with her beautiful poetry, she teaches us all that “nothing is impossible . . . the impossible only takes a little longer.” Her story is spellbinding! Anyone who seeks inspiration and motivation MUST purchase and read this dynamic journey of her life.

This amazing story is now available in Kindle and part of the lending program so you can share with your friends and family! Enjoy Sheila’s story today with full color pictures of her adventures. “The Impossible Only Takes a Little Longer: One Woman’s Story of Determination” is a page turner and her story will remain with you always. Her unapologetic frankness will bring you both joy as well as sadness and you will find that her zest for life is contagious! Order your copy today http://ibty.in/ZcWfs

Sheila Radziewicz is not just a self advocate, inspirational speaker, and author she also holds a B.A., as well as a M.A., in criminal justice! Sheila’s newly published book, “The Impossible Only Takes a Little Longer: One Woman’s Story of Determination”, is more than just a book. It is a message about ability. It is one example about how living with a disability can be amazing despite society’s challenges. One must purchase this book and experience her undaunted way of achieving so much despite the odds and obstacles society has put before her.  This book makes the perfect gift to anyone you know. It is recommended for teachers  as a means to educate about intolerance and differences. Her story is moving and inspiring, as she talks about her determination to succeed in an able-bodied world.

“The Impossible Only Takes a Little Longer: One Woman’s Story of Determination” is a page turner and her story will remain with you always. Her unapologetic frankness will bring you both joy as well as sadness and you will find that her zest for life is contagious!

About the Author: Sheila has been fighting injustices her whole life. After receiving her black belt in Taekwondo she began motivational speaking. Since then, she has spoken to adults and youth nationally and internationally sharing her passion for life.   

For more information about Sheila Radziewicz, please visit: www.sheilaradziewicz.com

Book Press Release

FOR IMMEDIATE RELEASE

“The Impossible Only Takes a Little Longer: One Women’s Story of Determination” by author, Sheila Radziewicz

The award winning self advocate and inspirational speaker, Sheila Radziewicz, writes from her heart sharing how she has overcome unimaginable adversity in her life. Highlighted with her beautiful poetry, she teaches us all that “nothing is impossible . . . the impossible only takes a little longer.” Her story is spellbinding! Anyone who seeks inspiration and motivation MUST purchase and read this dynamic journey of her life.

Sheila Radziewicz is not just a self advocate, inspirational speaker, and author she also holds a B.A., as well as a M.A., in criminal justice! Sheila’s newly published book, “The Impossible Only Takes a Little Longer: One Women’s Story of Determination”, is more than just a book. It is a message about ability. It is one example about how living with a disability can be amazing despite society’s challenges. One must purchase this book and experience her undaunted way of achieving so much despite the odds and obstacles society has put before her.  This book makes the perfect gift to anyone you know. It is recommended for teachers  as a means to educate about intolerance and differences. Her story is moving and inspiring, as she talks about her determination to succeed in an able-bodied world.

“The Impossible Only Takes a Little Longer: One Women’s Story of Determination” is a page turner and her story will remain with you always. Her unapologetic frankness will bring you both joy as well as sadness and you will find that her zest for life is contagious! This inspirational book has been published by createspace.  You will find this amazing book in a print version  now available on Amazon. In addition, an Ebook edition is currently in the works.

About the Author: Sheila has been fighting injustices her whole life. After receiving her black belt in Taekwondo she began motivational speaking. Since then, she has spoken to adults and youth nationally and internationally sharing her passion for life.

For more information about Sheila Radziewicz, please visit: www.sheilaradziewicz.com

sharing her passion for life.   

For more information about Sheila Radziewicz, please visit: www.sheilaradziewicz.com

Adaptive Sports

For a number of years I have thought about getting a bike again. As a child I had a big wheel and loved it.  I rode it so much it literally fell apart one day. Since then I have not had a bike and have often wanted one. Over the years I looked into it and found it to be expensive and complicated which often lead me to find something else to do with my time. Well about two weeks ago I started looking into bikes again and came across new information and possibilities. On Friday I went to NH to a program called Northeast Passage to have a bike demo. I was going to be able to try various bikes and see which would really work for me. Very exciting.

I received more out of the appointment then I had imagined. When I first arrived I was brought into a huge room of bikes. I got to look through them and see what would work we settled on two possibilities. A trike bike and the banana peel bike. The trike bike we had to play with for a while to get things set at the right measurements. This had hand brakes and the steering were with my hands which I found to be difficult once they had me riding it.

Then we switched to the banana peel bike. This bike was amazing it was so easy to use the steering and peddling were controlled by the hips and legs. It felt so natural. I rode around the parking for a while and found that I was getting good at it pretty quick. The main drawback to this bike is that it is only a one speed. So if I really got into riding I may need something with more speed.

I had a lot of fun and got amazing information. I found that I could sign up with Spaulding Hospital to be involved with their adaptive cycling program and use the same banana peel bike. This would give be a chance to really try this bike out before buying it. Then I learned about other adaptive sports that Northeast Passage was involved with water-skiing, kayaking, golf, and shooting. I’m very exciting about all these possibilities for this summer. I am already signed up for cycling and water-skiing. I’m looking into kayaking and shooting. I love to try new thing!

Easter Seals-Ready, Set, Go!

Easter Seals Team Hoyt Rising Star Award is given to a person who shows determination to break down barriers facing people with disabilities. This year I had the honor to be presented with this award at the Ready, Set, Go event. The evening was wonderful. Barry Nolan was the Emcee. He had great remarks about Dick and Rick Hoyt. I only recently have learned about the Hoyt Team and was even more inspired by their story after hearing Barry. Then there was the unveiling of the Team Hoyt Portrait which was amazing. Later I was presented with the Rising Star Award. Kirk Joslin, Easter Seals, presented me with the award along with a few friends of mine. I have been a friend and mentor to the Perrino family as their son also has TARs. I was blown away by his remarks regarding my life. I have to say I was a bit teary eyed as I was given the award.

I was honored to receive this award. As I said that night I have spent my life just being me and never imagined that my life would inspire so many people. I spoke to the Ready, Set, Go audience the only way I could and that was from my heart. I told them how amazing my family and friends have always been to me and how they made difference in my life. I also told them about some of the amazing experiences that I have had working with Massachusetts Easter Seals.

My friend Remon Jourdan then read an original poem called “An Honorable Equation” which was an opening for the next award. EMC Corporation received the Team Hoyt Award because they have determination to break down barriers facing people with disabilities. As a corporation they are ensuring that people disabilities have equal opportunities to work.

The whole evening was awesome and I’m honored to have been a part of the Ready, Set, Go evening.

“Delightful Sheila”

Delightful Sheila

The documentary was aired in S. Korea the week of February 19, 2012 and people involved with making were pleased with out come. I received my copies the second week of March 2012. I was very excited to watch it. I was curious as to what made the final cut and what did not. There was a lot of filming done and in the end maybe a third of it made it into the documentary.

Upon watching the film there was a lot of dubbing done to the English interviews. I had though they would keep our parts English with Korean subtitles. Perhaps that would of been to much for the Korean viewers. Just as they had planned there were four themes that my personal life including family and friends, my professional life including my work at HAWC and my motivational speaking, Tae Kwon Do accomplishments, and my trip to South Korea which were put into five episodes. I now have my own theme music which is pretty cool! I was amused to see that they kept me being annoyed with them at dinner one night. I looked at the camera a told him I was tired, sore, hungry, and cranky and I would talk to him later. Then there was a conversation with nephew when we were trying to get him to tell his name to the camera and he says he was busy. Very cute I was happy to see that made the film that was so him and he was so cute. I was really please to see that Shriners Hospital for Children was captured in a really good light as they have always been an important part of my life. Watching myself in this film and others has really given me a new perspective on how I do things and why people are sometimes amazing by what I do.

I have been slowly sharing the film with friends and family. I have a friend making some copies for me so I can lend them out. He is also trying to take out the dubbing into Korean of the English interviews to allow my friends and family to be able to understand. Just the other night I had a movie with a bunch of and one of friends who speaks Korean came over to translate some of the Korean. This was a lot of I finally got to understand what was being said by people in the Korean episode after I spoke or demonstrated my Tae Kwon Do. It turns out people were inspired by me! As I get better with video editing I hope to put parts of it on my website or youtube.

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Now a Korean Morning Show

It was about a week after I had returned from S.Korea when Master McCorry looks at me and says there was another call for you are you interested? I looked at him and asked what are they asking to do with me? He then makes a gesture of someone filming. How many days I asked with a little distress. One day he told me. Good I said because if they wanted more I’m not interested. The filming of my documentary was amazing but by the end of three weeks I was good to never be filmed again. He went on to tell me that a woman from a morning show called “Morning Wide” was interested as they were putting together a show on about Tae Kwon Do in America. He said she would be calling back within the week.

A half hour later a get a call from Ashley we talked for a few minutes and we agreed that she would send myself and the school an email about what the segment is about and what they were looking for from us. Over the next few weeks we spoke by phone and email as details changed and to setup the schedule. They were also interested in meeting my friends so I needed to figure out their availability as well. Finally, everything was agreed the filming would happen on March 19, 2012. The crew would meet me at my work at 5 pm from there they would film me going to Tae Kwon Do. We would stay at Tae Kwon Do from 5:30 until 7:30 and then my friends would come to my house for 8:00. At my house I would have an interview with the host and show them around and then my friends would be interviewed. That was the plan!

March 19, 2012 came quickly and before I knew it the film crew was here. I came down the stairs and I saw the crew outside. As soon as I came outside the host came right up to me and starting talking to me like we were old friends it was a little weird but I went along with it. I told her what my plans were for the night and invited her along. Just before leaving a colleague from the courthouse was coming into the building. Him and I talked a bit and they continued to film our conversation after they did a short interview with him. Then we were off to Tae Kwon Do.

Once we got their I changed into my uniform and went to help with the little ninja class. It was sparring tonight so we paired them up and let them spar. I’m not sure if this interaction was caught on film. When I called one of the kids up to spar he looked at me and pulled his hands up to his shoulders and laughed. I was a little surprised as I had never had this type of encounter with any of the kids at the schools in five years. I dealt with as I always would. I asked him if he would like someone to make fun of him and he said no. Then I talked to him about respect. The rest of the class went smoothly I worked with kids of different ages and we did free sparring and three step. Later I worked with one student on his forms. He did really well forgetting only a few things and so we went over them together.

After the children’s class they interviewed Master McCorry and then we got ready for the adult class. The host, Claire, joined in on the warm up which I lead and then we geared up for sparring. They filmed me throughout the class and interviewed some of the other student here or there. After sparring I ended up doing a short introductory session with Claire. This had been something that had been done with the other Tae Kwon Do schools they had visited here in the US. I walk her through how we started a class and then broke down some of the kicks. She did really and before I knew it time at Tae Kwon Do was done and I needed to meet up with my friends at the house.

When I got home two of my friends had already arrived and the filming started up to get the entering transition (LOL). Once in the house I had a few minutes to freshen up while they got the camera and lighting correct. Then it was rather informal conversation with Claire. We talked about my life, friends, family, and Tae Kwon Do. Then we moved on and filmed my friends and I talking. There were some prompted questions to keep us on target. It was pretty easy going. The director knew what she wanted and was sure to get it. When she decided we should sit in the kitchen there was no changing her mind and at times she was more interested in one of friends answers then another. Then it was time for them to go. They did say goodbye almost five times until they got the right shoot.

Overall experience

The filming experience was a little easier. First it was one day instead of three weeks. Second I’m learning how to hold my own. At one point in the arranging they got a bit pushy and I told them if that was there position then they could film someone else. They changed their tune real quick. Third everyone spoke English and spoke English when around me which was nice because I knew what was going on and what was being said the whole time. I have requested a copy and knowledge of when it will air in South Korea which should be before the summer Olympics. Until next time!

Easter Seals -Team Hoyt Rising Star Award

Easter Seals Honors Peabody Woman Who Defied the Odds

March 21, 2012 – Sheila Radziewicz, whose personal story has inspired people the world over, will receive the prestigious Team Hoyt Rising Star Award from Easter Seals on April 12. The ceremony will take place at Microsoft’s New England Research and Development Center in Cambridge.

The award, given annually, honors her efforts to break down barriers facing children and adults with disabilities, including her work as a motivational speaker and mentor.

Radziewicz was born with a rare genetic disorder called thrombocytopenia with absent radius (TAR) syndrome that left her with hands, but no arms or kneecaps, and a host of other medical problems. Doctors told her parents she would not live.

But with the support of her loving family, she defied the odds. As a child, doctors said she would never walk. After numerous operations and long periods in leg braces and casts, she went on to play soccer, roller skate, ride a mini-bike, ski and go horseback riding, among other things – just like the other kids.

Her connection with Easter Seals began when she took swimming lessons in an Easter Seals program at the YMCA in Malden, where she grew up. In recent years, Radziewicz joined the Easter Seals Regional Board in Boston and participated in the organization’s Youth Leadership Forum for teens and young adults with disabilities, discussing self-advocacy.

Wherever she goes, she inspires people with both her abilities and the motto she lives by: “Everything is possible. The impossible just takes a little longer.”

Today, Radziewicz is an articulate and confident woman of 33 who lives independently in Peabody. A college graduate with a master’s degree in criminal justice, Radziewicz works fulltime as the volunteer coordinator for Healing Abuse Working for Change (HAWC), an agency in Salem that helps domestic-abuse victims.

She purchased a new car recently with help from Easter Seals and drives with her feet, thanks to adaptations from the Massachusetts Rehabilitation Commission.

Two years ago Radziewicz became the first woman with no arms to receive a black belt in the World Federation of Tae Kwon Do, a Korean martial art. The distinction drew the attention of a South Korean TV station, which recently taped a five-part series on her life.

The media attention she received after receiving her black belt inspired Radziewicz to start a second career as a motivational speaker. In addition to the Easter Seals Youth Leadership Forum, she has told her story and spoken about disability awareness at local schools and organizations, and at Shriners Hospital in Springfield, where she was treated as a child.

“Sheila Radziewicz inspires everyone, both with and without disabilities, with her determination and accomplishments,” Easter Seals President Kirk Joslin said. “As a motivational speaker and mentor to children and teens with disabilities, she is a fine role model – an accomplished, successful and independent adult.”

Easter Seals created the Team Hoyt Rising Star Award to honor individuals who share the courage and determination of legendary athletes Dick and Rick Hoyt. The Hoyts, longtime Easter Seals supporters, are fan favorites in the Boston Marathon every year and inspire people all over the world with their message of, “Yes, you can!”

Easter Seals Massachusetts provides services to ensure that children and adults with disabilities have equal opportunities to live, learn, work and play. Nonprofit and nonsectarian, Easter Seals offers technological assistance, employment and training services, recreational activities, youth transition and leadership programs, veterans’ services, rehabilitation services and public awareness programs. For more information, call 800 244-2756 or go to http://www.EasterSealsMa.org.

For more info http://ma.easterseals.com/site/Calendar?view=Detail&id=37238