The WHAT who invented the Upsee?

I am a huge fan of Leckey Products. It is one of my favourite companies for durable medical equipment (DME). I am a big fan of their standing frames. I am a massive supporter of the KidWalk, I think it is an exceptional product and just to clarify, I am not sponsored by Leckey. I also wouldn't recommend a Leckey product over one that would be more suited to a person's needs. But as it stands, I am a Leckey fan.

I became an even bigger supporter with the company Firefly, designed by Leckey. Firefly really hits the nail on the head for me because they create products designed to help involve children with disabilities in family life. It is all about inclusion.

When the GoTo Seat started making appearances on various blogs, I was in love. The idea of a lightweight, easy to pack seat for children who need assistance with posture is both mind-blowing and so obvious. It has been such a great invention for so many people.

Daniel using the GoTo Seat.

GoTo Seat

I was in love with the GoTo Seat and Firefly instantly, and when the Upsee started to make an appearance, I quickly grew interested. For a while there was hardly any information about it, just a small teaser. The teaser showed Debby Elnatan talking about her son, Rotem, who has cerebral palsy. She talked about how she wanted him to experience the sensation of walking and it briefly showed what she originally did - the crude (but excellent) design that turned into the Upsee as it is today.

Claire and Daniel Smyth; Louise and Bethany Watson; and Cameron and Charlotte Taylor using the Upsee

I waited online with a lot of my friends in this community, excited to see the reveal of the Upsee. It has now been produced, and it's excellent. The feedback has been largely very positive. I am a big fan. I have huge respect for Debby Elnatan.

So, imagine my shock when this photo started appearing:

What. The. Heck.

This photo hasn't just been shared and seen a few times: it has been viewed hundreds of thousands of times. I am furious. Credit to George Takei for correcting himself, but my fury still stands. This misinformation grates at me. All it took was a Google search and I found so many people who have been misinformed about who invented the Upsee, and also about Charlotte Taylor's disability.

Firstly, to Debby Elnatan. The woman who has made an incredible design, is getting ignored. Why? Is it because it's more emotional and adorable if a dad does this for his daughter? It is clearly better fodder for inspiration porn (another topic I could rant over).

There is only two ways I can see that this picture occurred...

1. Someone saw the photo of Cameron and Charlotte, briefly skimmed the article, threw together some assumptions, created this inaccurate picture and spread it like wildfire on the internet.

Or...

2. Someone created this picture, knowing full well that Debby is responsible for the creation but knew it would be soppier, mushier and more visually appealing with Daddy and Daughter, Cameron and Charlotte.

Cameron, Charlotte and the rest of the Taylor family are reportedly reaping the benefits of the Upsee and that makes me thrilled. She and her brother can play on the same level, and she can be part of family activities more readily. Charlotte, who is not paralyzed but has cerebral palsy, can experience the sensations of walking. This is what the Upsee was designed to do.

But, it wasn't designed by Cameron Taylor. It was designed by Debby Elnatan. Even in comments, when people read that it wasn't invented by him people say "so what? It's a great design". I get what they're saying, I do. But "so what?", "so give the person who created it the credit due her". Because, Ms Elnatan - well done. I am sorry you're not getting the credit you deserve. You have designed an exceptional product and you are changing the lives of so many children and family.

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Her Final Birthday

The other week, it was Auntie's birthday and it will be her last one. Short of a miracle, she will not see her next birthday.

We had an excellent day. She was quite bright that day, and there was a lot of laughter. Uncle P, her and my mum's brother, was up from Sydney and he bought the entire family fish and chips. He even bought me a different meal because he remembered I don't like fish. Auntie ate some chips.

We were all there: Mum, Dad, Brother, Cousin, Uncles, Grandmama... in the afternoon a friend of ours with an accessible van brought Grandfather out to visit too. My auntie's goddaughter (who went to school with me but was a year above me) was there too, the first time she'd been at one of our family functions - she coped wonderfully. I have seen her a couple of times since as well, and other people who I know are very important to my Auntie. These are the people I will see at her funeral.

It almost feels like a dream now.

We had champagne and I tried to drink it in the spirit of it all, but I really couldn't. Uncle C was more than happy to take care of it for me. I think he also took care of Auntie's.

We spent way too much time talking about how it's so strange that we have the cutest pets in the world. We clearly just pick well.

We all spent a lot of money on her, and I would do it again in a heartbeat.

The evening was very difficult, and not all of my friends understood that. After being positive all day, I cried like a flash flood in the evening. Because we had just celebrated her last birthday, and I am so happy to say it had been excellent.

We got no respite because the next week was Mother's Day (respite came later), and it has always been a celebration for Auntie, Grandmama and my own mother. It's a team effort; raising me, Brother and Cousin. The celebration was at our house and it was a bit quieter than Auntie's birthday. She was also much, much sicker. She lay in her recliner for most of it and rested. But it was Mother's Day and we got to celebrate it together.

A Mother's Day Montage

There is a lot of lasts going on, but also some firsts. I knitted her a scarf the other day and it's the first time I have successfully completed a knitting project. I'm meeting some people for the first time (or the first time in a long time) and I can see why they are so important to my aunt.

There is sadness, there is crying. But there is this strange sense of peace. You can't spend your life being sad all the time, because it is not really living. It's a sad situation, but you cannot be sad all the time. Otherwise you will die too.

So today, Mum went to Meals on Wheels for the first time in months and she's going to see two friends for coffee. She'll go see Auntie in the afternoon. Grandmama had a fall last night so it is important that she goes to the doctor and I will take her, and I don't know when we will see Auntie. So Uncle C is taking care of her this morning. And that is okay, we can just take it a bit at a time - and dwell on life, not the death.

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Dear World, Thank You for the Respite

A lot has happened lately, and I haven't had the energy to blog about it. The days are long, and each is different and each is so similar. Palliative Care is a strange kind of in-between. A drawn out waiting room. There is some beautiful about it. I continue to hate it, on many levels, and on so many others I have grown used to it.

I see a lot of people who I don't normally see, and the thought crosses my mind: "These are the people I will see at her funeral". It's a strange sort of thought. In some ways a terribly dark thought, in some ways a very comforting thought. Her goddaughter is someone I have known from school, though she was not in my grade, and I have been able to talk to her and it has been a great comfort for me.

Auntie was discharged from hospital and is now under palliative care for another hospital, but as an outpatient which is great news.

We do some things that I'm sure psychologists would say are not healthy. Spend a lot of money on her. I don't care. Nobody can tell me otherwise. What I did learn thought was it's okay to have 24 hours away, and recently I had a 24 hour break to Sydney - about an hour plane ride away.

I saw my cousin who lives down there. We ate food. We drank. We went and saw Lion King at the the theatre. My friends and I sat at Starbucks and drank and read our books for a couple of hours.Forget the rest of the world. Pure Bliss.

It was a kind break the world gave me away from the explosion of stress the world has given me - good stress and bad stress. In the past week, I am now employed in three different places. I am so thrilled. Every single one of these employments are in the disability field - one of them is specifically in speech and communication, and is with Charmaine. These are all excellent things. I can't wait until I can tell you about them properly.

Uni continues to throw never-ending study at me, and in amongst all of that we've had my Auntie's final birthday, the final Mother's Day (both of which I will talk about next post) and never-ending issues with Grandfather...

And so, the world exploded with stress. Blogging became a distant dream.

But I was given 24 hours. 24 hours to breathe.

24 hours without guilt. 24 hours with sunshine. 24 hours with friends (who I am frequently neglecting).

Thank you for the respite world. Now I can return to it all. Discussions of how many milligrams of what medication Auntie has taken or should take are back. Cleaning the house is back. The days that are so similar, yet so different are back.

But I got a break, and it was fantastic.

Give yourself a break sometime soon, too.

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