Chasing Butterflies Daily

 Elis' condition, achondroplasia, is a disproportionate form of dwarfism, while his torso is average sized his arms and legs are shorter than average. As a newborn the difference wasn't noticeable but the older he gets the more the growth in his limbs slows in relation to the rest of him. It's worked alright to roll up his sleeves and dress him in smaller sized trousers (as long as the waist line hasn't been too tight). But now he's well and truly on the move, as well as weaning, I find his sleeves keep coming undone, becoming filthy and soaked in no time. I learnt to sew as a child but it has been the best part of a decade since I used a sewing machine, that is up until six months ago: I requested a machine for my birthday earlier in the year and have had a great time making the girls cute reversible dresses. Now I'm venturing to unknown territories though as I'm starting to alter Elis' clothes. Sewing in jersey isn't easy as the material str...

It's a pretty well known fact that siblings get great amusement from imitating each other. ESPECIALLY younger siblings when they copy the older ones and annoy them to the very brinks of frustration. Having a younger sister myself, I can vouch for it's efficiency in winding someone up. Our two oldest ones even have a game that consists of them saying (until it escalates to full blown shouting) "stop copying me" at each other while simultaneously making movements for the other one to copy and making pretend grumpy faces. This usually ends up with them both laughing hysterically, that is until one of them decides that they don't actually want to be copied any longer and the giggles turn into a real argument. We've however hit a new phase with our second born as she now imitates her big sister anytime said sister injures herself. It's been going on for a couple of weeks so of course I usually brush off her whining and tell her she's fine and not sore...

I hadn't intended on such a long break between the previous post and this one but we had a visit from my gran last week, that coupled with me feeling extra sluggish during a fibromyalgia flare-up has slowed down the writing. However I have a few more things to cover for this year's dwarfism awareness month before diversifying the blog content somewhat. To start I'll be honest about what I thought before Elis' diagnosis as most of this is still so new to me and I don't want to preach without being candid about my own previous misconceptions. As a child I learnt that someone who was short and disproportionate was a dwarf while someone who was short while still proportionate was a midget. As an adult I gradually understood that midget was derogatory, I now know it's incredibly frowned upon and it's a term that simply shouldn't be used to describe anyone. All the "M"-word does is bring up memories of Victorian style freak shows, they are u...

So far for Dwarfism Awareness Month I have mainly focused on how our family has been affected by it while trying to share some facts about the most common condition, achondroplasia. I want to touch on a subject that hasn't begun to play a part in our life yet, but unfortunately it's the reality for so many people with different forms of dwarfism. Something we average height people take for granted, getting about independently. Imagine you're going out to get groceries, to start you can't reach most of the things you need (I'm 165cm/5'5" and I have a hard enough time getting to higher shelves; to put that into perspective those with dwarfism tend to be shorter than 147cm/4'10", averaging at about 122cm/4' in height), then you need to struggle to pay for your items because you're not tall enough. Next you need to pop into the bank, mind how high up their windows sit? Again, I usually struggle to hear them properly through the barrier des...

I've mentioned some of the more obvious features of achondroplasia, like the disproportionate growth of limbs related to trunk size and the protruding forehead which tends to make their heads larger than average so I'd like to talk about my favourite feature. When Elis was born you could hardly tell there was a discrepancy in his arm and leg length compared to the rest of him but as his torso has stretched, his limbs growth has slowed and it's become more obvious. I think he's pretty big until he's lying next to another baby his age and all of a sudden it's noticeable. Getting him dressed is always an interesting game as well, not just because he's the wriggliest thing ever (I'm sure his shorter limbs makes easier for his to wriggle out of my grasp than it was for his sisters), but because it's always a bit of a jigsaw figuring out what clothes will fit. At 7 months age he's in 1-2 month sized trousers, but only if they're loose enoug...

October is dwarfism awareness month and I'd like to take the opportunity to continue sharing our story and writing about something I feel I know a little about: at the moment that is caring for babies (I say "know", but I am mostly winging it just like everyone else). Elis is our third child in 4 years  a nd the first person with restricted growth in our family . I'm by no means an expert on Achondroplasia or children, but I can describe some of the new things we've been faced with due to Elis' achon that we didn't worry about with his two average height (the preferred term to use when referring to those who aren't of short stature: AH abbreviated) sisters. When we were given his diagnosis we were given a long lists of " do's & don't's " & told to expect him to hit his physical milestones much later than average height babies, there should be no cognitive delays however. Despite this list (that felt very daunting...

Below is the FB post that started me on this blogging journey, I hope it continues to raise awareness outwith this month. February the 4th 2018, 8 months ago, we went to Ninewells for our 3rd trimester scan. I could tell something wasn't as it should be, with a serious face the woman doing our scan said she wanted a second opinion and so we were asked to wait for an obstetrician to come speak to us. Our baby appeared to have restricted growth in his limbs while his head was measuring noticeable larger than average for gestational age, that along with excess amniotic fluid led them to believe he had a condition called Achondroplasia; had we heard of it? No, we hadn't. They mentioned the better known term: dwarfism (Elis has the most common form but there are over 200 conditions). I won't lie my head was mostly spinning at this point, trying to hold on to the words "but the baby looks healthy & happy in there". My knowledge of dwarfism was limited to...

I've toyed with the idea of writing before, maybe not a blog necessarily, but some form of writing. I've never felt "brave" enough, or rather I've worried that I'll seem pretentious; who'd want to read my musings? If you're reading this and are connected with me on Facebook you may well laugh since I tend to post a fair bit on there. But I've always felt like my friends and family kind of have to show an interest, this however is a plunge into the greater worldwide web, and part of me is worried I'll feel too naked. I enjoy writing & posting photos on social media (that makes it sound like I use numerous platforms, but really it's only Facebook, I just felt like I was over using the word ) mostly because I enjoy seeing the memories pop up. As a mum of 3 young children (+ dog) I get great satisfaction from getting reminders of what we've done or accomplished in previous years. I have over the last few years received an increasi...