Personal Stories

Dance, music and finding love

 - a member’s story by Stephanie Flanders

I was born with a little right arm with two fingers and a thumb, my ‘little arm’. Before writing this article I asked Mum and Dad what were their feelings and thoughts when I was born. It was 1983 and ultrasounds did not pick up that I was a bit different. So my little arm came as a bit of a shock. At first my parents wanted to fix it. By the time I was about five years old, the doctors finally were able to make them realise that it was not possible to fix, and that I would be fine the way I am.

They had many worries about what I wouldn’t be able to do. They worried about things like, how I would tie my hair and play the violin. I’m now 21 and with the support of my family there were very few things that I wasn’t able to do. I had an operation on a finger when I was six months old and had to wear a cast that went right up my arm. This caused a few problems for crawling. So I developed my own slidingon-the-bottom technique. I learnt to walk quickly and when my full fingered little sister arrived and I no longer had a cast, we would have crawling races. I was very excited about starting grade one and was a very busy six year old.

I started learning the keyboard and also enjoyed ballet and gym. In ballet it came time for the ballerinas to doStephanie Flanders, Ballerina their first exam. However, because of my arm, the examination board refused to allow me to do the exam. After much thought my parents decided not to take the matter further with the board. Instead, I completed my exam with a different examination board and did very well. I discovered a few things that proved quite difficult with my little arm such as monkey bars and handstands. Mum and Dad always made me feel better by pointing out all the things that I could do that other kids couldn’t and that if I particularly wanted to do something, then, as long as I worked hard and kept trying, I could do anything.

L ots of people tease me and stare

I ’m used to it but I do care,

M ost people think I’m great,

B ecause I’m different and a good mate.

K ids don’t understand,

I ’m a Limbkid- isn’t that grand

D on’t tease people who are different- that’s mean,

 S ometimes I think it’s all a bad dream.

This is a poem I wrote in grade four. At first everyone at primary school thought my arm was really ‘cool’ and everyone wanted to be my friend. Often kids would ask me what happened to my arm. Mum, Dad and I had already talked about how to reply to such questions. I would tell them that I was born like it, just like they where born with blonde hair or brown eyes, for example. In grade two a big grade six kid teased me about my arm and called me a ninja turtle (they have a thumb and two fingers as well). Mum and Dad had always made me feel like I was not different to other kids and the school had a very good anti-bullying program. I knew what I had to do and went straight to the Deputy Principal and dobbed! After that, when kids teased me, I knew that they were just trying to make me upset and that I had many friends who thought I was great. So I tried not to let it bother me. All kids get teased sometime in their life. I just had something easy to pick on.

After playing the keyboard for two years I got a bit frustrated. We started doing scale patterns and I didn’t haveStephanie the Cellist, practising for an orchestral performance enough fingers to do them like everyone else. I pointed to a picture of a cello on the wall and said that I would like to try that. My parents arranged lessons for me. It was difficult. I got a special bow made to make it easier to play and practised hard so that I was as good as other kids. By the end of primary school I was confident, happy and outgoing. I played softball and netball for which I was the goal shooter. I was chosen as student councillor by my peers and often received ‘Aussie of the Month’ and other awards. My little arm rarely bothered me and I even had boyfriends in grade seven. Not that we would even talk to each other or even hold hands. 

The transition to high school was a little difficult. I became quite insecure and hid my arm behind my back. Only one of my friends from primary school went to the same high. High school seemed a big scary place. People asked the usual question, “What happened to your arm?” I would reply with the same answer that I had always used. I wasn’t really teased but I often worried about what other people were thinking about me. I continued to play the cello and joined the school music program. The orchestras, bands and choirs at the school went on a tour to Sydney later that year. On the tour, I made many new friends and my confident, outgoing self, returned. The friends I made on tour remain my closest friends today. I was enjoying music a lot.

My music teacher, who had taught me privately from when I was at primary school and was actually a violin teacher, decided that it was time that I was taught by a music teacher specialising in the cello. The first cello teacher I saw listened to me play and said that I should give up the cello and play the trumpet. He didn’t like that I had a different technique when playing. I wasn’t fussed on the trumpet and didn’t give up the cello. I found a wonderful teacher who inspired me and put every effort in to help me play the best I could. The rest of high school was lots of fun. I wasn’t the best at sport but I was always willing to have a go. When we had to do gym, I tried my hardest at cartwheels and handstands, which, according to my friends, looked quite hilarious. I continued to be a ‘muso’ and ‘hung out’ at the music block.

It was there that I met my first real boyfriend, a trumpet player named Cory. I had a couple of boyfriends before I met Cory. The boyfriend I had my first kiss with told my whole class I was a bad kisser and I only kissed him on the cheek. In year eleven Cory ‘asked me out’ and five years later we are still together. Mr and Mrs, Cory and Stephanie Morris.My biggest worry with having a boyfriend was holding hands. It took a while before I would let Cory touch my hand or my arm but within a short time and with reassurance from Cory, I got over it. He told me he couldn’t do cartwheels or monkey bars either. He invited me to his year twelve formal (he was a grade above me). I was extremely nervous. I didn’t know many people in his grade and once again I started hiding my arm behind my back. When having my photograph taken, I tried to make sure that I was on the side that didn’t show my little arm. However, I quickly gained confidence again and my little arm found its way out from behind my back for my year twelve formal photos. Since leaving school, I auditioned and was accepted into the University of Queensland’s music degree. My principle study is cello and my aim is to teach music. I also was fortunate enough to be accepted into the Queensland Youth Symphony and toured Germany and Italy with them.

Although I still have not mastered the technique of handstands or monkey bars I am very happy with what I have achieved. I can tie my hair and play the cello. Being a “Limbkid” has made me realise that all people have things they can and can’t do. I can fit my whole hand in my mouth and because of a bow in my arm I can point backwards around corners. No one I know can do that!

Post-script:- Stephanie and Cory were married on the 28th June 2009, have just bought their first home. Stephanie is now the Vice-President of Limbkids Support Association Inc, and continues to mentor the younger members of our association.

Our Journey with Phoebe

Story by Gail Allen

Finding out I was pregnant was everything I ever wanted especially being told that I would not be able to fall pregnant by a couple of specialists. Three days before I got married I, found out that I was five weeks pregnant. I was ecstatic! I was having a great pregnancy I had no morning sickness and was really enjoying my bump and feeling very lucky. My 20 week scan was  approaching and my husband and I had decided to find out the sex of our baby as he already has three girls to his previous marriage and I think we were both hoping for a boy, but at the end of the day it really didn’t matter just as long as the baby was healthy.

We arrived at the hospital to have our scan and we were joking with the lady about having another little girl and she didn’t seem worried about anything. When she was finished she told us that she was new at this and needed another lady to recheck her photos. The next lady came in and redid the scan and then told us she needed to go and check her photos again, she then came back in with a doctor following her, he came in and just simply said “there seems to be a problem with your babies arm she has some of it missing, I’ve rung your doctor and he is waiting for you if you want to go over there now”.

My first reaction was, “this is not for real they have just made a mistake” and I looked over at my husband waiting for him to say “no babe they have made a mistake”, but he didn’t, he was in shock too. From then on everything just seemed to spiral out of control for me. We walked over to the doctors and he couldn’t tell me anything except “we need you to get to Brisbane to see another doctor to get a more detailed scan”. This couldn’t happen until 5 days later. We came home in disbelief and my husband was being really positive but all I wanted to do was terminate the pregnancy. During this time while I was still at home things got worse because I thought there was so much more wrong with her and no one could tell me it was just her hand. My doctor had told me I had until 24 weeks to decide if I wanted to terminate the pregnancy, and I was already 21 weeks. During these 5 long days (before going to Brisbane) I would sit on the toilet and try and push as hard as I could hoping it would all go away and just cry.

My husband kept saying just picture any of my three little girls without their hand, but this did not help, it all just seemed so unfair. I had three step-children that were perfect and I had done everything by the book through my pregnancy so why did this happen to me? What did I do to deserve this and what did I do wrong, it just wasn’t fair!!! It all got too much for me to handle so I rang the hospital. I don’t know what they were supposed to do, but I had no support group to call. The nurses were great and got a doctor to call me and he calmed me down a little and wanted to admit me into hospital, but what I really needed was to be with my family. Monday arrived finally, and we arrived in Brisbane and went to get our scan done. The doctor really couldn’t tell us much more than what they told us in Cairns, so I started asking for an amniotic test, but the doctor kept telling us that the risk of having a miscarriage was higher than there being something wrong with our baby. I still didn’t believe what he was saying, I wanted more answers, but there wasn’t much more he could say.

He eventually referred me to a Genetic Scientist the same day, I think he did this just to put my mind at ease. The Genetic Scientist {Kate Gibson} was a little piece of heaven for me, she went out of her way to talk with us and went through all of our family history and explained all the reasons of how this could have happened. It appeared that when our baby’s hand started to form she suffered a blood clot in the main blood vessel that feeds blood to her hand and this stopped the hand from growing, they called this “Poland’s Disease”. We walked away feeling a lot happier because we felt more informed, but we were still very upset and felt that we needed to clear our heads to get some meaning and understanding, so we hired a car and drove to NSW for a couple of days. On our way home Kate called us again and told us that there was an organization called  "Limbkids” and said they had committee members in West Burleigh, so we called Mark and Cindy to see if we could meet with them on our way through. The next morning we went over for breakfast, on our way over I had a lot of mixed emotions about meeting their daughter Amelia, as I had never met anybody with a limb difference before. I almost felt ignorant to people with these differences, I always thought “that would never happen to me”.

When we arrived I was scared, but Mark and Cindy warmly welcomed us into their home and after a few minutes Amelia came out and I had and instant feeling of relief, she was absolutely beautiful, and you could hardly even notice her hand. Mark and Cindy explained what happened to them and how she coped through her years of growing up, and her determination to do things that other children take for granted. After breakfast we left feeling really positive and we knew we had a wonderful support group which was a huge relief. We came home and just tried to accept what happened and almost forgot about it until my due date neared and all the emotions came back.

On the 25th February 2005 Phoebe Jane Allen was born very health and very alert. She was born with a wrist and a little thumb, so far doctors have told us they may be able to straighten it and it will be useable. Looking back now I sometimes feel embarrassed about the feelings I had when we found out, especially when she gives me the most beautiful smiles and we can see how beautiful and precious she is. Phoebe is now six months old and it is really amazing what she can already do with what she has, she can pick things up with her good hand and pushes it into her mouth with her stump, it is really cool to watch. I still have days where it saddens me, but they are overpowered with the love she gives us, and I cant wait to share the good and the bad times ahead of us. I think we are all going to be stronger people for it, including her.