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June 24, 2015 / Me and my girl...

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 is not limited or full of endless pain, my GP barely recognises me. 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.

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May 21, 2013 / Me and my girl...

Me and my girls…

I thought I should write a bit about our new daughter. F was born 8 weeks ago and is once again perfect like her big sister. Much to our surprise she is going to be tall now when I say tall I mean just not have dwarfism. Not as someone recently asked ‘off the scale?

After a couple of weeks( post diagnosis during pregnancy) of slightly panicking and contacting other dwarf mums who had ah children for reassurance, we quickly came to the love the prospect of this new journey. F was born and I was once again overwhelmed by her and thought she was perfect my love instantly grew to two children and all the usual feelings flooded over me including wanting to protect my little girl from other people’s assumptions.  The amount of well meaning acquaintances that have happily asked us how we are going to cope when she is 7 years old and bigger than us. I find it such a difficult question to answer without sounding tiresome. Of course we will cope parenting isn’t just about being bigger than your child. It’s about loving them, providing for them and creating a secure, safe happy environment for them to grow up in, I’m confident we can do this for both our children. Of course each of them will have their wobbles and I’m sure we will too but I think that if we keep open and communicate as a family then we can face anything together. I’m very excited and confident about this new journey I just wish everyone else would be too.

April 12, 2012 / Me and my girl...

Back to work…

Going back to work has been really interesting, every day I change my mind whether it’s the right thing to do.

I switch between some days feeling like I’m one of those super women that balances everything and glows from it – check me out one minute I’m talking about audience figures with my stylish media glasses on the next I’m changing a nappy in my track suit. Other days I feel sad that I’m dropping P off and painfully miss her all day, whilst secretly hiding in cupboards at work to make phone calls to see how she is!

Don’t get me wrong I have only gone back part time and P seems to love this independence, one day she is with a child minder and a group of other little girls the next she is at my folks eating chocolate until she explodes and getting lavished with attention – heaven!

I think it’s more that I can’t decide what is best should I have just taken a full career break? After all we do want more little p’s and people at work don’t quite get the hang of part time -‘ is it tomorrow you’re in’? Or was it sensible to keep a job during this current climate and would being at home full time make me want to shoot Mr Tumble!

April 11, 2012 / Me and my girl...

2 years on..

Well P celebrated her second birthday just a few weeks ago. I stopped writing a blog as life just got in the way 😉 However I’m now feeling like time is going so quick that I may give it another whirl. Even just to indulge myself in the memories and experiences of having a 2 year old.

P has embraced the toddler years with predictability and plenty of surprises. She took a little longer to walk but certainly not to talk. She is now showing true signs of independence and confidence that seem to come as a must with all dwarf children. As all mothers I believe she is very bright and sometimes must admit to being slightly obsessed by talking to D about her level of intelligence – is this a reflection of myself needing reassurance that she is going to be just like everyone else or is it just every parents guilty pleasure? In the last 12 months I have been greeted by a mixed response to my new family. Many people are happy to stop me to say how beautiful she is, many people can not also wait to proclaim how clever she is and then their is the odd few over confident or rude people that ask me whether my genius blonde beauty will be going to special school?! Or the man in Marks and Spencer’s who over confidently asked myself and D whether P will be small like us and when we proudly answered yes he came back with ‘well you can’t win them all’

June 28, 2010 / Me and my girl...

What we look like..

People keep telling me P doesn’t look like a dwarf which is funny as not sure what to do with my face when they are telling me or what they expect. I think they are telling me in an almost reassuring tone but I really don’t mind that she does. It’s who she is and being a dwarf does not also mean she can’t be cute and beautiful in fact she is the most stunning baby I have seen but again lets not go into motherhood cliché’s

June 27, 2010 / Me and my girl...

Achondroplasia

A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort. – H. Albright

I thought I should explain a little about achondroplasia not because I love talking about it but because it may help you understand myself and my daughter. This is what it says on Wikepedia which I think is where we should begin I don’t want to bog you down with too much information after all me and P are really just a little shorter than you

Achondroplasia dwarfism (pronounced /əˌkɒndrɵˈpleɪziə/) is a type of autosomal dominant genetic disorder that is a common cause of dwarfism. Achondroplastic dwarfs have short stature, with an average adult height of 131 cm (4 feet, 3-1/2 inches) for males and 123 cm (4 feet, 1/2 inch) for females.

Approximately 1 in 25,000 people are born with Achondroplasia in  the UK which usually means every so often we bump into someone in the street and do the awkward head nod. Not wanting to stop and talk as after all we are only the same height it would be like everyone with blue eyes letting on to each other but there is an urge to  aknowledge we belong to the same club which warrants at least a polite head nod. Or if you are my mother or father you pull over on the side of a busy road and practically throw yourself out of the car in order to speak to a fellow short person who is probably terrified they are about to be abducted!

At the moment P being small hasn’t seemed to make a difference although I’m use to her, it’s only when I see other babies throwing their heads around on the floor and confidently holding it up that I realise P may be a little slower at certain physical things. Looking forward to seeing some other small babies although nervous I may scare their parents with to many questions and an over keenness to share!

June 26, 2010 / Me and my girl...

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 had no choice I was far to small to push and call me old fashioned but I didn’t want to die during child birth.  So on the 17th March 2010 P 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 that it’s hard to not steal other peoples lines and 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