Life has changed!

I’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.

Thrive: Empowering Young Women with Disabilities

Massachusetts Easter Seals piloted a program this weekend in Boston called Thrive: Empowering Young Women with Disabilities. The program paired young women with disabilities with women mentors with disabilities. The program touched on a number of different themes that impact young women with disabilities. Some of the workshops included impact ability, Thrive against ableism, media’s depiction of people with disabilities, and health care advocacy. The keynote speaker was Harilyn Rousso and she read excerpts of her book “Don’t Call me Inspirational-A Disabled Feminist Talks Back”. As a woman with a disability myself I was so energized hearing pieces her book and am very excited for it to come out on January 31, 2013. Some of the other programs and individuals involved in the Thrive program this weekend included Impact: Ability, EPIC empowering people for inclusive communities, Ms. Wheelchair Massachusetts Patti Panzarino 2012 and Ms. Wheelchair Massachusetts Santara Sen 2010.

The Thrive program is something that I wish that I had as a young woman with a disability. Growing up with a disability I didn’t have that many individuals in my life with disabilities and most of my mentors were able-bodied individuals. This program gives a safe place for young women with disabilities ask the hard questions, to figure out what they’re supposed to know and to connect with others with disabilities like themselves.

I tell you being a part of this program was amazing. I got the opportunity to spend a weekend with some of the most strong confident, independent thinkers, empowered, determined, supported, beautiful women with disabilities. I definitely hope that this program is one that Easter Seals continues to support.

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

Meeting others with TARs

For the first 20 years of my life I knew of only three other people with TARs, I was told one boy was six months younger, the other boy was six months older and then there was the young man who was 18 years older than me. I have one memory of speaking with Andy, the young man, on the phone I remember him telling me that he drove a car and flew a plane. My parents had met him once at Shriner’s Hospital when I was only a few years old. The brief moments of connect that Andy had with my family and I had more impact then he may of ever known. First he gave my parents hope that I would become independent some day. He was also living proof that you could grow up with TARs and be healthy and happy. I also recently learned that his dressing sticks gave my parents the idea of creating my hook a.k.a. dress stick. Mine would develop into something much different but it gave me the independence that he had in his life. Our conversation on the phone made me realize that I was not alone in the world. Someone else was out there that understood what I was going through in my life.  While in college I meet a woman with TARs for the first time and I learned that there was long arm TARs and short arm TARs. Unfortunately, our only common thread was TARs and did not become very close friends in the end.

A number of years later Shriner’s  Hospital took me up on my offer that if there was anyway that I could help please call me. There was a family with a two-year old boy with short arm TARs and they wanted to talk with another with TARs or others who understood TARs a bit more than them. I told the hospital that I would be happy to talk with them please give them my number. I waited for their call. Our first call lasted hours. She had so many questions about how I had learned to do things, how my parent dealt with having a child with a disability, and what was my medical history was like. It was exciting to think that my own life experience could help this family in a real positive way. I realized later that I was the hope for this family that Andy had been for mine. We had a number of conversations after that and then we decided to meet.

Meeting young Michael was exciting and difficult all at the same time. When they all first arrived Michael was brought into my apartment and they ran back to car for a moment. I remember seeing him sitting there on the floor and for a brief moment my childhood flashed in front of my eyes I was sad for him because I knew what kinds of physical and emotional pain was yet to come. Quickly, every else was in the house and the fun began. I got to watch Michael do things in his own way which was amazing to watch. It gave me a peek into what my childhood may have been like from the other side. This new friendship gave me a new understanding to what my parent did for me and how hard it must have been for them. Over the last few years we have continued to be friends talking on the phone and visiting. Michael has had surgeries now that give him the hope of walking on his own some day.

The internet has been an amazing tools to interact with other people who have TARs.  At this point in my life I have met, spoken to, and emailed many people with TARs and some of their family.  My story is online and it has begun to give hope to more than one family. I have had the chance to met others and support them in their independence. That story is for another day.

The markings of my body: Scars and Tattoos

Within the first year of my life I had small cross scars on my ankles I’ve been told that they were needed because of the cut down that was necessary. Cut down what that meant I still don’t know. What I do know is that was just the beginning of my scars. I have about ten scars on my legs and all of them are different shapes and sizes. They occurred to foster one common goal and that was for me to walk without the need for leg braces. As the years went by feelings about my scars would change. At times they were cool because I had better scars than all the boys. I was able to freak my older sister out by making her look at them when they were new. Then they were not so cool any more. I found myself hiding them from the world. My legs were bony, skinny, and scarred because of all of the surgeries. The interesting thing about my insecurities was that when I was made fun of it was usually about not having arms. Finally as I ended my teen years I shredded my insecurity of my legs and embraced the scars that gave me the strength to walk on my own. In my early twenties I was offered the chance to cover my scars through plastic surgery and I said no. These scars were a part of me and I was not hiding a piece of myself again.

About 2 and a half years ago I decided to make a mark on my body of my own choosing. I was about to get my first tattoo. Some people supported me, some did not and others did not understand why. The WHY was empowering. Throughout my childhood scars were left on my legs by others. Truly, I was never asked do you want the surgeries that will leave scars on your body but I never said no either. I wanted to walk and that was the only thought. This tattoo would be the first time that I requested a mark on my body of my own free will and had nothing to do with being able to walk for the first time in my life. It was my choice and that was powerful. This past weekend I received my second tattoo. It was still about my choice and it represented me taking back my body. The tattoo sits right next to one of the scars and now when you look at my leg you first see a mark that I choose and then the scar. interestingly, while getting the second tattoo the feel and the vibration of the needles reminded me of getting my casts removed as a child. That process was scary and sometimes painful. Now I have a new memory that was about choice that was not frightening or painful.  It was EMPOWERING!

As a woman with a disability this chosen body transformation has been an amazing experience. Will I choose more tattoos in the future or will I again be scarred to continue my walking I do not know only time will tell.