Diabetes Awareness Month 2019

It’s November, which is diabetes awareness month, which means that I finally get to introduce you to my mum. My mum has type 1 diabetes which has a massive impact on her life just like any disability, yet she still carries on and is a huge inspiration to us all. I know that that word is used too often and I don’t want to be that person who calls someone inspirational for just carrying out day to day activities but when you have your own needs and own appointments and also have to deal with a child with demanding needs you deserve some credit.

Mum has diabetes as part of having an auto-immune disease which means she gets very poorly very easily resulting in fatigue. Meaning that we have a lot in common, even though cerebral palsy and diabetes are very different, and fatigue will be caused in different ways we can still relate. This forms a big part of me my mums relationship because we all have bad days when our disability gets the better of us and I’m human- if it’s been a bad day fatigue wise I complain to any member of my household but being able to talk my mum is special because when I say I’m fatigue she gets it. Although I know that mum suffers a lot I am weirdly extremely thankful that I have someone so close that understands, just that little bit more than the rest! As small as it sounds it’s great because we usually go for our flu jabs together which to someone else may not seem a big deal but it’s nice to think that the morning after the flu jab when I’m moaning about my achy arm my mum understands my pain.

But it’s not just our similarities the make our relationship special it is out differences… Even though elements of our disabilities are similar we also understand that we can never fully know one an other’s needs. This is something that we often talk about, in which this helps our relationship as we can then have respect for one another.

I often worry about becoming diabetic myself as it’s on both sides of my family which means the chances of me developing it at some stage are higher. You’re probably thinking that if I was going to develop the condition, I would have already got it but mum was diagnosed at 42 so this means there’s still a chance. I worry about having diabetes because I often think that diabetes and cerebral palsy would be too much, I mean I would have to have the pump for sure… let’s not talk about me injecting. But even though I worry I look at my mum and just see how she handles it so amazingly well especially whilst juggling her other conditions. I guess I’ll always have some worries about how I would handle diabetes if I ever get it. But it doesn’t eat away at me because how can I let it when I’ve had the best teacher and role model?

When I wanted to walk at the CP Teens sponsored wobble!

Life must have been a juggling act when I was younger and was more dependent on her, and I guess in some ways it still is as I might not be as dependent on her but I’m still not totally independent. Yet, this teaches us more so to just make the most of life and enjoy it. It’s fair to say that my family probably faces more challenges than the ‘ordinary family’ but you know what that’s okay because without these challenges we wouldn’t have these significant bonds. My mum has been there through every appointment and still is, she text’s me most dinner times to check up on me, I always text back to check up on her too and I wouldn’t have it any other way!

Happy diabetes awareness month 2019 mum, thank you for everything you do and continue to do for me despite facing your own health battles on a daily basis. I know you don’t do social media and don’t let many people share photos of you never mind dedicating a whole blog post but, you deserve this recognition because I wouldn’t be writing this blog today if it wasn’t for you! Oh, let’s add some cheese… I love you mum I know you’ll always support my needs, and I’ll always support yours.

Happy diabetes awareness month 2019 everyone, please raise awareness!


Down’s Syndrome Awareness Month 2019!

October is Down’s Syndrome awareness month which gives me a reason to do another post on how adorable Tommy is. A few months ago I did a post about Tommy and my feelings towards no longer being the only disabled member of the family. However, that post was 4 months ago now and Tommy is now 7 months old so since then he has taught me an awful lot about what being a cousin means. I am very close to my family and we are always in regular contact- to be fair I would say that me and my cousins are a lot closer than most. I am very fortunate to be so close to my cousins and am thankful for their help as just like I’ve said about my sister sometimes even with my younger cousins I still feel like I am the one being looked after. I’m the one who has to grab on to their arm and I’m the one who asks them to carry my drink. As I’ve said time and time before this is fine I’m used, to it I’m not going to have a break down about it anytime soon; when a younger cousin asks you to help them and you have to redirect them to their other cousin, that’s also younger than you it can be a bit disheartening even if it’s something small like carrying their drink.

But with Tommy it’s completely different… Yes, I’ll never be the go-to cousin for practical elements and I can’t pick him up and bounce him; I can offer Tommy something that no other cousins can because I have a sense of understanding and that will always make our relationship special (even if he wriggles too much to sit on my knee). Even though Cerebral Palsy and Down’s Syndrome are completely different conditions Tommy and I have similarities and can understand each other in a way that no other family member can. Just like my parents have a new connection with Tommy’s parents because they understand what it’s like to have a child with needs. Since Tommy has been in our lives he has taught us so much and has enabled us to be closer as a family especially Amanda and me. This is because we now have something in common that we never thought we’d have in common and I must admit sharing experiences of disabled activism with a close family member is a very good feeling. I feel like I have taken on two roles one of them being the best big cousin to Tommy and the other one being the best little cousin to Amanda!

Amanda always keeps me updated on Tommy’s latest appointments- I love hearing about how he is getting on as I said sometime’s I can’t give advice but sometimes I can and even though my experiences aren’t the same as Tommy’s at times they are similar. An example being that me and Tommy both do physio and even though Tommy’s physio is different to mine me and Amanda still send ‘physio selfies’ and can still talk about it, mine and Tommy’s physio needs are different but we both have physio needs and that forms part of our special bond. I also relate to Tommy from an occupational therapist perspective- I have always said that I could see myself working in paediatrics’ so being able to listen to Tommy’s experiences just inspires me to become a paediatric occupational therapist even more because I want to help Tommy and understand his needs in the best way possible. I do feel like I have a better understanding of Tommy’s needs and the reasons for his therapy interventions such as ‘tummy time’ even though I’m only a year into my degree.

But, despite having this bond with Tommy- I love him for being Tommy and yes we would have had a different bond if I wasn’t disabled but I still would have loved him the same. Just because I understand his situations a bit better than other family members doesn’t mean I’m an expert on Down’s Syndrome either because I still have a lot of learning to do. Does it help me that I’ve had a seminar on it? Of course, but my own learning on Down’s Syndrome has just started, and this is what Down’s Syndrome awareness month means to me. Down’s Syndrome awareness month is an opportunity for me to learn more Down’s Syndrome and to learn more about Tommy. Yet, this blog is a start because when I’m writing about Tommy I learn so much about our relationship and the steps I need to take to keep building our relationship in which I and Tommy can always look back on to remember how significant our bond was even just 7 months in to his life.

Thank you for reading. Please share and spread awareness about Down’s Syndrome!


No Longer Being the Only Disabled Member of the Family

Welcome back to another blog post! This blog post is a family post- yes this is my third family-related post within the last 3 months. However, my family is a very close family and they have always been very supportive of me so I think they deserve a bit a credit because I wouldn’t be here if it wasn’t for their support! But this blog post is about one member of my family Tommy, one of our new additions, (I can’t say the newest because that would be a lie- my family is quite big) who has Down’s Syndrome. I wanted to write this blog, to share Tommy’s and Tommy’s family’s story and to talk about how this affects me as another disabled member of the family.

So, let’s start at the beginning when my cousin found out that she was pregnant (yeah, it’s going to be a long post again- sorry) …

This is my cousin and Tommy’s Mum- Amanda.
This photo was taken a few weeks before we found out Amanda was pregnant.

You’re probably thinking why I am starting from before Amanda got pregnant- but I do have my reasons! Last year was a very difficult year for my family, especially for Amanda so when we got the news that Amanda was pregnant it was a blessing and it was certainly the good news that everyone needed. However, when we found out that there was a 99% chance of this baby being born with Down’s Syndrome our excitement soon turned into worry.

When I first heard the news, I wasn’t sad because I for one know that disability isn’t the end of the world; I was worried because Down’s Syndrome can come with a lot of health complications, so it was fear of the unknown. However, I knew that I had to step up and be a good cousin. My sister, my parents and I all felt responsibility now as we were the only ones in the whole family that dealt with disability daily. As previously mentioned my family are a close unit so I feel responsibility whenever I get a new cousin but now I just felt like that I needed to be the best cousin I could possibly be and not just for Tommy but for Tommy’s brother Charlie, Amanda and her husband.

I started thinking of ways in which I could help my cousin’s out, and I remember subscribing to Down’s Syndrome on The Mighty and sitting there trying to figure everything out. But the answer is I didn’t need to figure anything out because Amanda was just amazing and before I knew it she’d started her own Instagram page named My Upside Down Rainbow. Amanda’s page is just incredible, I am so proud of her for starting this page. As a disabled activist, I’d already recommended a few sights like The Mighty that she should subscribe to, but I didn’t want to enforce this too much as everyone deals with situations in different ways. But the awareness that Amanda has raised and continues to raise is huge and I couldn’t be happier to welcome my cousins to the disabled activist family. I am so proud of Amanda for how far she has come and for raising this awareness.

Tommy has been in our lives for just over 3 months now and what an incredible 3 months they have been we learn from Tommy every single day he encourages me to explore things that I’ve never explored and to be a better version of myself. For example, I had my first Makaton lesson a few weeks ago and if it wasn’t for Tommy, I would have never have actively done this. I’m interested in Makaton and of course as a student occupational therapist I think this is very important, but I would have never done this in my own time. I’m not a Makaton professional or anything as due to my fine motor skills I find it quite difficult (the man who was teaching kept looking at me and I could sense that he thought I didn’t know; I just struggled to perform the actions) but the point is Tommy inspired me to go to Makaton and I’m thankful for this even if I did look like a bit of lost soul.

But it’s not just Tommy that inspires me Amanda also inspires me too (I know I know, the dreaded word that’s used too lightheartedly but I do have a point to make). Previously she posted this photo of Tommy.

This photo is adorable every time I see a photo of Tommy I just want to shout, ‘He’s my blood relative’, but it was Amanda’s words that made my day that day. Amanda wrote:

‘ ✨If you could wave a magic wand, what would you change?✨
When it comes to Tommy, we really wouldn’t change a thing. This may be a strange concept to someone on the outside who may think surely, you’d remove his Down’s syndrome if you could? You see, if we did, he wouldn’t be the Tommy we know and love, he would be another different baby. Our journey may have been a bit bumpy but it’s made me love him more fiercely. He does not suffer with Down’s syndrome as some people may think. His extra chromosome is intertwined in every cell in his body and makes him who he is and he is pretty happy with that.
I would only change the world to be more accepting of those who are different and change the negative misconceptions of Down’s syndrome.’

I’ve been writing pieces on disability for 2 years now; even I don’t think I could have chosen words that fit so beautifully than the words that Amanda chose here, and for that, I am beyond proud- this is inspirational. The term Down’s Syndrome was only mentioned to my cousin and her husband 9 months ago and yet they already have this view, and this is inspiring. I’m 19 and yet it was only 2 years since I adopted the view of my looking at my disability in a positive light. In my blogs, I often discuss how my disability is a strength but not everyone has this view, and this is okay this isn’t bad. Some days I can be doing something, and I really want my hand to be steady for a few seconds or I want my legs to not ache. These days are entirely normal, I have now at the age of 19 accepted that I don’t ‘suffer’ from Cerebral Palsy, so I think is it inspirational that Amanda wrote these words at such an early stage.

First time I held Tommy. Side note- ignore the ridiculous eyebrows we all know I struggle as previously discussed.

Tommy and I already have a great bond because we have something in common that no-one else in the family can relate too. I know Tommy is going to grow up and achieve wonderful things because like me he has the most amazing support network behind him. I hope that I can help Tommy not just as a fellow disabled person but also as an occupational therapist- but what I do know is that I am looking forward to being involved in Tommy’s life whether it be as a person with a disability, an occupational therapist or a cousin. He’s already made me a better person and taught me so much and I just can’t wait for the future (well I can wait till he becomes taller than me).

Charlie reading his little bro a bedtime story.

Much love to these amazing people, I am so proud to call you all family!

Thank you for reading!


Having a Little and a Big Sister!

This blog is dedicated to my sister, best friend and the reason behind the name of my page, Matilda.

As I have gone into occupational therapy and have got older, I am more aware that having a disability has an effect on other non-disabled siblings and I know that over the years my needs have meant that I have had to have more attention than my sister. But I’ve never heard Matilda complain once about this! Matilda does things to help me that I could never do for her, this is a bit disheartening at times because I’m the older sibling and I should have been the one looking after her instead of her looking after me; this has only brought us closer together. There is 15 months between myself and Matilda, which meant that due to my CP we reached quite a few developmental milestones at around about same time, for example walking and due to this, it made us closer. Matilda and I have always been close, and we always will be, but we are closer because we’ve had to deal with quite a lot, some of which most sisters won’t have to deal with in their lifetime, therefore these experiences only make our relationship stronger.

As a young girl I’d always envisaged that I’d be the one doing Matilda’s hair
and makeup, and that I’d be the one painting her nails; then I came to the
realisation that, that was never going to be reality and that in fact, it was
going to be the opposite. Matilda has always helped me to achieve these activities rather
me helping her, and I will never forget this. Rather than me teaching her how
tie her shoe laces she taught me, and she would always stop to watch me try and
conquer whatever task big or small, even coming up with ways to make the
task easier! Just recently she bought me chunkier brushes to help me with my makeup,
she saw me struggling and then acted upon this, and I will be forever thankful
for this. These little gestures mean the most. The police came into her college
recently and did a talk about safety regarding contact-less cards, and they got
given a cover to protect their cards; Matilda came straight home and said that I could
have hers because I’m a much more vulnerable target. She thought of me and put my
needs before her own, she probably thought this gesture was nothing, but that
gesture made my day that day.

I’m lucky to have this amazing support network around me, with all my family members not just my sister; I don’t give Matilda enough credit, she never asked for this life! Yes, I understand it’s a different situation because she’s never known any different, but I will still always appreciate how she’s dealt with what’s been thrown at us. Having a disability doesn’t just affected me it’s affects the whole family dynamic; Matilda has just accepted this dynamic and embraced it. Yes, at times, I may make her do my makeup when it’s the last thing she wants to do, but we make this fun she always finds a way to distract me so that she can do my mascara and those fiddly aspects! At the end of the day she takes my bracelet off and this is means a lot to me, more than she will know. I studied psychology at A-level and Matilda is currently studying psychology and whenever she  asks me for help with revision, and I get excited than most because I am actually helping her with something.

I am very fortunate to have a little and a big sister all in one as not many people can say this! I have always used this term and Matilda uses this term for me too as it does tell people a lot about our relationship, however our relationship isn’t just made up of Matilda helping me out, we do have laughs and jokes too just like a normal sisterly relationship! We do spend a lot of time together, and like any other relationship our time a part is good too because we still have our disagreements. I know that at times I perhaps rely on Matilda to much; then other time she can almost insists ‘Georgia just let me do that’ (knowing full well that I’ll be trying for half an hour). I’m so thankful we’re close in age as I don’t remember life without my sister helping me, even though I do wish I could be more of a big sister to her, I wouldn’t change our relationship because this is what makes our relationship mean so much. Matilda, is the first person I talk to in a morning and the last person I talk to at night, and I wouldn’t have it any other way!

Thank you for reading,

Happy early 18th birthday sis, can’t wait to take you for cocktails!