I was surfing the web and stumbled upon this video titled “My Perfect Family: Candle Dad”, and it got me interested. It starts with the dad cooking breakfast for his family, who lives in Beachland, Auckland, New Zealand. From the first few minutes in the video Tony, the dad introduces us to Nicki and Emma Sykes, who are only 13 months between each other but what makes them unique is that the sisters both have downs syndrome hence the name downlights that I’ll get to in a minute.
When Emma finished school at age 21, her dad Tony tried to find a job for her, and he asked a variety of businesses that he knew since he had his own business. Sadly no one wanted to give her a job, so they started their own business making candles. They always had candles at home, and Emma really likes them, so the dad thought let’s make candles. However, he soon figured out that making candles it’s not as easy as it seems, so he asked help from his friends and one of them introduced him to Jennifer Del Bel who already had her candle making company.
She offered Tony and Emma to use her manufactured facility to produce their own candles while she taught them those tips and tricks that she picked out along the years. In the beginning, Tony had a small selection of fragrances that he would sell at the market, and that’s what lead to the media picking up the story and talk about it which helped them sell a candle a minute for two days after they appeared on TV. Which help the brand Downlights get on its feet, and I think you already why the name downlights and that’s because both girls have downs syndrome.
The independence in Emma has grown since the start of the business, which is really amazing to see. To see the changes for a better life that this job gave her makes me go speechless! Tony hopes that as the business grows, he can employ more people with downs syndrome so that they too can have a better life.
Downlights Information :
Best of luck Downlights,
So, the day I’m writing this post, I’m at home in bed with a chest infection, and my breathing isn’t too well. Yesterday, I finished Five Feet Apart and here are my thoughts about it. Now, I don’t have Cystic Fibrosis, but I do have Cerebral Palsy, which is a lifetime condition too. So I know all about medication, therapy, hospitals, and not being able to hang out with friends because my body is too weak.
The person who inspired Justin Baldoni, the director of Five Feet Apart was a YouTuber Claire Wineland who help Justin getting as close as possible to the real Cystic Fibrosis (cfers) patients’ lives. Sadly she passed away a few days before the movie premiered. However, upon further research, I found out of Dalton and Katie, whom both had Cystic Fibrosis but against medical advice fell in love and got married.
I see myself in Stella, I do reminders on my phone to remember me if I need a new medicine, so I found that touch real. It might be tough to not be able to touch your friends and people you love when they need you the most. One interesting fact is that the book Five Feet Apart by Rachael Lippincott, Mikki Daughtry, and Tobias Iaconis was written after they started filming the movie.
Usually, it’s the other way around. Will is the opposite, and I think that’s what made them fell in love because they bring the best in each other. I think they romanticised Cystic Fibrosis to ease the public into knowing and learning more about this condition. In my opinion, showcasing any health condition at this level will create awareness, educate and raise funds in research for Cystic Fibrosis, and that is always needed.
I might regret writing this post in a couple of years but, I’m doing it for two reasons, first as the tag line of this blog says I’m willing to my life and everything within it because my life stories could help people out. Secondly, I got so many questions on this subject that I want to be able to refer to people somewhere when they want to read more about the issue.
I have a condition called Cerebral Palsy because the hospital made a mistake when I was born, which landed me in a wheelchair. The most common question I get asked is “Are you paralyzed?” my answer is no; I’m not I feel every inch of my body. However, my body has a hard time when it comes to movement.
My thoughts on making love change from time to time but that’s not because of my condition or my religion. The main reason is that I’ve gender dysphoria making me uncomfortable with my body most of the time. By the way, I want to make something clearer just because I’m a pan-sexual doesn’t mean that I’m dating anyone that comes, especial if they can’t my condition and lifestyle.
If you read my last post on the subject, you know that going to my childhood home isn’t the easiest to cope as I said in this post here. Months ago, my mum outed me to my dad, and I guess she was right that was the most straightforward way of doing things and for the truth to come out.
I didn’t know that my dad knew, and I was about to change my name and gender marker. I wanted my dad to know, so I went to my mum and told her that I was worried because I wanted to come out to dad, but I knew he won’t accept me as his son, and my mum said to me that he already knew and didn’t get it.
In the same day when I had my gender clinic appointment, my mum needed to go to Gozo (where my dad and my dogs live), so after the clinic, I went with mum. My dad and I had a head to head conversation, and my dad said some of the most hurtful words I was ever told. To the point where I couldn’t even open out about the week after in therapy.
Guess what the day I’m writing this I’m back in my parent’s home because my mum wanted to come, and I had no choice but to come with them soon my mum is the only one who takes care of me. My dad and I are on speaking terms, but he still views me and thinks of me as his daughter, and before you come for me, I know that these things take time.
I’m willing to wait for things to heal because the saying says time heals everything. However, I’m worried that once I start hormones, my dad will disown me and that will be the end of an already rocky relationship. My relationship with my dad has always been rocky. For me to become my true self, I’m risking losing a parent for my life.
Always on the fight to become more me,
Today, the 21st of March 2019 I’m sitting here in a small cafeteria waiting for my notary to sign one of the most critical papers I ever signed. Going back fourteen years ago. My mum and I were talking in bed, and all of a sudden looked at my mum and asked her ”What will it take to change my name?” she said ”A lot of money.” and in a way, she just brushed it off. However, my mind kept dreaming that one day, I’ll have a name that belongs to my true self.
My hands are sweating because I’m excited but also scored, my mum, isn’t jumping for joy about it but she’s still here baby steps people baby steps. Okay, my notary is here. Time for my mum to step away and for my meeting to start. I don’t have much of a reason, but I decided I wanted to do this alone from start to finish.
I bet that this is going to be a hard post for me to write, but I’ll write anyways. My mum is an ex-nun, yes, you heard me right my mum used to be a nun before she married my dad and had my sister and me. I’m sharing all this with you so that you how much close to church we grew up.
When trying to talk about, LGBTQIA+ issues I would get frowned upon by my parents and school since as a teen I went to a church (the biggest mistake my parents ever did, in fact, I moved schools after four years). A few years back, I was doing my nails; the only thing that was considered ‘girly’ that I would do since I’m a nail-biter. The conversion ended up being on transgender people, and my mum said that ‘’they’re just freaks.’’ Little did she know I’m one of these ‘freaks’.
I recently read a called A Seat at the Table by Simon Bartolo, this book is basically about the LGBTQIA+ community and it touches religion in Malta and speaks about religious people (religious people I know personally) via my mum. As I read what they said about the community and the hatred about people just like me I wanted to cry my eyes out because the people that preach that God is love are the same ones, that hate on humans like them. I might request a meeting with the ex-bishop and tell him how much his words hurt me. Also, the church is why my dad would never accept me as a man.
I woke up
She said I get too mad
And block me, I re-slept
It’s 3 am after all
Woke up again
And sadly, my first thought was,
When will I get testosterone?
Not thank you God I’m alive
But at least that makes me myself
I’m one friend lost
I chose not to let that break
And I know you guys
Are my friends
And I love you all