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October 18, 2018

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He's just small, that's all.

I have been following Floyd and his family for a long time now,

and I was so happy when his mum, Jade, was keen to have a chat

with me about his achondroplasia (dwarfism). 

Not only did we chat about Floyd, but also about his twin siblings, Harry and Cleo.

I vividly remember the Instagram posts showing how full on the first 6 months

of the twins lives were, and they're such a big part of Floyd's story.

Thanks so much Jade for sharing your family with us.

You wrote a blog about your heart break and tears when Floyd was diagnosed, which is a very raw and beautiful insight into how I think any parent feels when faced with an uncertainty related to their child. 

Was it helpful to write it out? What was the feedback from the piece?

So helpful, it was like free counselling!  The only negative backlash was from trolls – who weren’t actually interested in us or our story – they’re just trying to get a bite.

Having said that, I’m not sure how long I will keep the article there for, because I’m not sure I ever want Floyd to know we were so scared.  Sharing his journey is something I struggle with sometimes. I know it’s helpful for other people going through a similar thing, but sometimes it gets a little hard to be a lot of people’s support network. I’m sure I’ll also go through a time in my life where I will share less about the kids, to respect their privacy. 

It’s just so hard to change peoples perceptions of dwarfism, and there is a lot of work to do with awareness.

 

You mentioned in the piece about Dr. Google telling you about all the complications related to dwarfism, what have you since learnt? Are there any things that you’ll still have to be mindful of?

We were so scared about the complications, because google tells you about EVERY SINGLE THING that can go wrong – but these are the extreme cases.  They don’t tell you that the spinal surgery, brain surgery and leg surgery (etc, etc) are a small percentage of cases and, if you need to have this surgery, most of the time it’s relatively straight forward anyway.

Sure we will have to have ongoing medical appointments for Floyd, but we’ve also seen 70 year olds with Dwarfism who are perfectly fit and healthy.  This was one of the main reasons we started the social media account, so people could see a perfectly healthy kid, who also happens to have Dwarfism.

 

Through your social media, you’ve helped build a great profile of dwarfism and obviously met lots of people with the same condition as Floyd – how has it helped? Can you imagine going through this in the days pre social media?

Having to go through this pre-social media would have been WAY HARDER! Not just in terms of sharing our video (so we didn’t have to tell everyone we knew face to face about Floyds diagnosis), but also for reading other people’s stories and getting support through the initial stages.

When we first searched the #achondroplasia – there were only medical accounts, and there were hardly any blogs.  There are more now, but there still isn’t a week that goes by that I get thanked for helping create awareness.  It makes it hard because sometimes I’d like to 'move on' with our lives and not have the social media stuff, but I also know it is helpful for other people like it was for us right back at the beginning.

 

I feel like you had probably only just got your head around Floyd  diagnosis when you got pregnant again, tell us about the moment you found out you were having twins!

The plan was to have 2 kids close together, even after the diagnosis, so that Floyd could have a good support network.  I’m extremely close with my sister and I really wanted Floyd to have that too.

My husband was away for a month before our 12 week scan – so in that time I was caring for Floyd solo while I was really unwell.  An hour before the scan I was actually questioning why we thought it was a good idea to get pregnant again so soon, because it was all just too hard.  Maybe I had underestimated Floyd’s needs?

Given that, and the fact that there are no twins on either side of our family, it was pretty full on when the sonographer told us there were two babies in there.  My husband was literally silent for 5 whole minutes, and I cried. A lot.

I only really started to come to terms with it when we found out we were having a boy and a girl at 20 weeks – before then was a bit of a blur.

 

Were you ever worried that one of the twins would also have dwarfism, even though you knew it wasn’t genetic?

It crossed my mind, but no.

There is no case of 2 children being born in the one family who both have dwarfism, with average height parents. There are a few of twins, but not different pregnancies.  So we weren’t worried. 

 

Has it been weird / good / bad to watch the twins growth compared to Floyd’s? Do they understand?

*Pauses, reflecting.*

Sometimes it’s sad when they can climb things at the park or they can go down a slide on their bottom, or they can do something simple that he just can’t.  It’s sad not because he’s going to be a little person, I’m honestly so proud and genuinely love that about him, but it’s sad (pauses) to think about other people hurting him. Him getting teased and getting bullied.

When they were overtaking him in height it was hard, but now that they’re taller, no.  Luckily, he was too young to understand what was happening when they got taller, which made it easier.

 

What, if anything, will be different about Floyd future compared to the twins? What do you hope for him? 

I downplay this stuff a lot, usually saying “he’s just small, that’s all” – but the reality is, is that he is different to other kids, there are LOTS of appointments.

We see a team of doctors at Brisbane hospital, (orthopaedic surgeons, sleep specialists, etc) which is mostly check ups and monitoring.  As he gets older hopefully there will be less appointments, but if there are any issues they can become severe very quickly, so we need to have them.

So he’s not different, at the core, but there may be medical complications for him as an adult.

I mainly hope he doesn’t understand that when people are staring at him (when he starts to notice), that it is because he’s different.

 

Do people often assume that Floyd is also intellectually affected? How do you handle this?

Because of social media awareness, it hasn’t come up. More people are the opposite in that they think he’s really advanced, because he looks like the size of a 1 year old.

We sent a letter to his pre-school this year, just to inform his teachers and other families about Floyd.  Reminding them that 'no two people are the same and that we should celebrate our differences'.

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