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October 31, 2017 / Garde Girls..

I was born with long legs..

October is Dwarfism awareness month which means my Facebook and twitter news feed were filled with members of my community sharing information which helps others understand dwarfism. In our house every day is about creating awareness.

When our first daughter was born we were delighted to find that she had inherited our condition and had Achondroplasia; the most common form of dwarfism. My husband and I knew how great life could be for her and although there would be some stumbling blocks along the way she would find her place in the world and belonged here. Seven years on and she is proving that every day.

Three years later we were expecting our second child and waiting the results of genetic testing to rule out the lethal condition of double dose Achondroplasia which unfortunately means the pregnancy does not continue or the baby does not survive beyond birth. We had been here before and on our journey to start a family had experienced this awful outcome.

We were again delighted to find that our second daughter did not have double dose however there was a twist – she did not have Achondroplasia. Our baby was going to be born, what we call you guys ‘average height’. On hearing the news my mind raced for a second. My first thought was ‘how big?! My husband is Danish and although he stands at 4’2 the rest of his family are huge! I had visions of carrying around this giant toddler or actually maybe that toddler carrying me around!

I knew that I loved her so much and my biggest fear was I wanted her to always know that and never feel different from her parents and sister.

We were not the first family and we will not be the last. The chances of a couple with achondroplasia having an average height baby is 25% based on 50% chance of having a baby with achondroplasia and the other 25% unfortunately being the double dominance.

I reached out to other families for advice they were very supportive and mostly the advice was to; relax and everything was going to be great – they were so right! A message that really stuck with me and became our mantra, was from a mum with dwarfism who shared how she explained genetics to her own daughter; it was just one gene that was different between ourselves and our daughter. We had so many other genes that we have in common. It’s important to remind our children of all the things we had the same.

From a young age my daughter and I would be walking to the shops or playing in the park. We would have casual conversations regarding mummy being a small mummy and how she was going to be bigger than me when she was older however she would look so much like me because of our other genes; we both had brown hair, brown eyes. And how she was left handed like daddy. At the time it felt like it was more for my benefit, she was far more interested in playing than listening to me drone on.

This September she started school and like every parent I was worried, hoping that all the life skills we had tried to encourage, such as kindness, empathy and strength would help her navigate through the day. She settled in well and ran in every morning and out every afternoon with big smiles.

Scooting home one day a new friend asked her; ‘why her mummy was small’ She stopped in front of me and I strained to hear her reply; “my mummy, daddy and sister are small because they were born that way. I was born with long legs so I’m going to be bigger but I have brown hair and brown eyes just like my mummy” she answered smiling. The boy smiled back and then challenged her to a race on the scooters.

Without realising my daughter had contributed to dwarfism awareness and shown that she like her sister was here to make a difference.

June 24, 2015 / Garde Girls..

Achondroplasia and my family..

For decades the medical profession has tried to think of ways to make me taller; The latest thing to potentially hit the market is a drug which can be injected every day in the hope of a few extra inches. The drug is marketed at parents who are worried about the future of their little ones with my condition.

I’m 37 years old and married with 2 wonderful children. Our eldest daughter is 5 years old and has inherited our achondroplasia, something which we are bringing her up to be very proud of, as we know her future is very bright. Our two year old is average height, we are very excited for her future and the privilege she has of growing up in such a diverse community.

Our 5 year old is excelling at school and has a very active social life that as a busy mum is hard to keep up with. So far she has minimal medical issues. Both my husband and I are very healthy, active parents who barely remember our achondroplasia. It’s only other people that like to remind us, either the occasional inquisitive stare on the high street or medical advancements that presume we may not be living a fulfilled life. There is nothing I would change about my achondroplasia it has been part of my destiny and I’m very proud to belong to a culture where we can mix with diverse families and learn and laugh together.

In context my life has been very ordinary I went to university, spent time on a kibbutz, travelled round the world and had a career as a researcher at the BBC. I’m now training to be a teacher; I teach sixth form media studies and every day I’m surprised at how little the students notice or care about my height. We are active members of our local community and both girls enjoy the local school, nursery and various clubs. It’s this community that makes me forget my height; I’m ‘the girls mum’ when they bump into me in the village.

Every morning my 5 year old scoots from our house to school. I watch with excitement and pride as she passes her friends exchanging hello’s and giddiness about their day. I stand in the playground chatting with the mums and kiss her goodbye as she enters into a classroom which is full of acceptance and general nonchalance about the fact she is at least a head shorter than her friends. I’m aware that at times her height may be questioned but I hope that we are providing both our children with the confidence and inner happiness to answer any questions about themselves or their family with pride, politeness and an understanding that people are inquisitive.

So my answer to the presumption that a drug will improve my life; I’m ok thanks in fact I’m more than ok. Life is great and that is partly to do with me being born with a condition that makes me shorter. Life for me is not limited or full of endless pain. I’m aware their maybe medical issues that pop up in our family however it’s part of our route and maybe a bit of a diversion but it will not stop us getting to where we want. I would not exchange this journey for any promise of being taller. I ask instead that we put our energy into creating awareness that being different is not a big deal. It’s not our family that needs to change but more attitudes and presumptions towards people with difference.

June 26, 2010 / Garde Girls..

No pushing

I was booked in for a caesarean. One of my friends called me lucky. I wasn’t sure how I felt about it and this was the start of what would be a worrying road of  reading books that like to tell me that everything that was happening to me was bad for my baby and the bonding. I longed to hear stories from other mums with my dwarfism who would tell me everything was going to be fine.  I had no choice I was far too small to push and call me old fashioned but I didn’t want to die during child birth. So on the 17th March 2010 my daughter was born after no pushing but plenty of medical staff and tilting tables.

I’m not going to describe the feelings I felt when I first saw my daughter, as it has been written about so many times and it’s hard to not steal other peoples lines. The experience and emotions are so unique that I just want to keep it to myself. All I know is I have never been so excited in my life to start this big adventure, together with someone who would turn out to be very quickly my most favourite person in the whole world and so far we’re having no problems with the bonding.

June 26, 2010 / Garde Girls..

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