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) …
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:
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.
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).
Much love to these amazing people, I am so proud to call you all family!
Thank you for reading!