It’s been a bit of an emotional day. I’ve had my first appointment at the hospital I used to visit as a child and teenager to keep an eye on my growth.
The building has completely changed, but the walk up to the hospital brought back a lot of memories.
Like the many times I would be stretched as tall as possible under the height measurer (sorry don’t know the proper term).
Of the kind and gentle paediatrician in a white coat and striking hair that looked more like a mad scientist than a doctor.
The time it was discussed about whether I should take growth hormones that could possibly give me a few extra inches in height and feeling the weight of having to make the decision of whether or not to, as a child.
The time I was told which potential chromosome was causing my dwarfism and from which parent (that was a hard appointment) but that they didn’t have the genetic testing available to confirm this. No genetic counselling was offered and that testing and confirmation would come over 20 years later.
Then the appointment as a 13-14 year old where the x-rays confirmed that my bones had stopped growing and I would definitely not be catching up with my peers – that was a difficult appointment too.
This is what I also remember of those times…
My mum making it a girls day trip out shopping to the big city where we just happened to have a hospital appointment at the same time.
Mum putting her arm around me after those difficult appointments and saying “come on let’s go get something nice” as we walked back down to the city centre.
I also remember feeling lots of different emotions – anger, rage at these circumstances and situations, guilt. Defiance. Sadness.
A knowing that even at a young age, that I may have stopped growing physically. But knew, even as a teenager, and what I can now put into words as an adult, that such circumstances provided the opportunity for me to grow in many other ways that would not be determined by my height.
My dwarfism continues to influence and effect my life. It doesn’t let up or give me day off. Some days, weeks and months I manage and cope with it better than others. At the moment it’s challenging me again.
Most of the time I’m not looking for solutions, platitudes or how inspiring you find me. I’m looking for and needing you to listen, to please give me 10 minutes of your time. To help me offload when I’ve encountered ignorant behaviour. When I’m frustrated because I can’t do something or my anxiety has got the better of me. Sometimes, because I’m bloody tired of having to deal with so much crap on daily basis, let alone the day-to-day stuff your average person encounters.
Though through all of these difficult times, please know this. I feel and know that dwarfism has provided me with a rich life.
There are many times when I feel it has opened far more doors than it has closed. Experiencing new places and people I would not have otherwise.
Today though, walking to and from the hospital I realise that I am feeling sad, emotional and it’s ok to grieve for what was and is… and then carry on with rest of the day.
#dwarfismawarenessmonth #russellsilversyndrome #dwarfism