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In Honor of Global Tracheostomy Tube Awareness Week, Why Representation Matters

by Elena Hung May 24, 2018 3 min read 7 Comments

So. This is my daughter, Xiomara, in her first modeling gig for Princess Awesome, wearing their "Groundbreaker" Construction Trucks dress.


I love everything about this. Everything.

I love that there's a little girl with a tracheostomy in an advertisement for kids' clothing.

I love that a new audience is now seeing a kid with a trach, because before Xiomara, I had never seen a kid with a trach.

I love that the ad is not about a trach. It's just a kid, in a pretty dress, who happens to have a trach.



I love that there is a parent with a trached kid in the NICU somewhere right now who might see this, and pause, and hopefully then see their kid as a kid full of potential, and not as a long list of medical diagnoses.

I love that this image of the trach is not scary and medical, like it often is.

I love that Xiomara's pulse ox machine is just hanging out in the background. I know that a great majority of people have no idea what that is, but I am so excited for my fellow medical parents to see it and exclaim "WE HAVE THE SAME PULSE OX!"


I love that there is an Asian kid in an ad for kids' clothing, because I never saw someone who looked like me in ads when I was growing up.

I love that Xiomara is playing with a toy truck, because she actually does love playing with trucks. And she is just as excited about diggers as her big brother.

I love that this dress is blue, because I think blue is a great color for girls and there's never enough blue in the girls' section.

I love that this dress has pockets, because dresses with pockets are the best thing ever.

I love that she's playing with dinosaurs in another ad and sitting between friends. Oh, and yes, she is connected to her ventilator for additional breathing support.


I love all of these things so darn much.

I love that Princess Awesome knows that and supports that.

I love that Princess Awesome is founded and run by two amazing moms, Rebecca Melsky and Eva St. Clair, who want a more inclusive world for our children.

I love that Princess Awesome collaborates with and hires women-owned and women-run businesses to carry out their mission. From the textile designer to the factory, from consultants and support services to the photographer, the talents of women are sought and valued.

I love that Princess Awesome uses a warehouse and shipping facility that employs people with disabilities.

I love looking at this picture, and most of all, I love how hopeful it makes me feel about the future. Yes, it's an ad for a pretty dress, but it's also so much more than that.


This week is Global Tracheostomy Tube Awareness Week. A tracheostomy tube is a plastic breathing tube that is placed in a surgically-created hole in the trachea (windpipe) to allow for safe breathing by bypassing the mouth and nose. It is a life-saving device that may be required for many different medical issues.  Awareness Week was founded by Tonya Treadway Boyd, a mom of a child with a trach, who wanted her daughter to understand that she was just like everyone else.  

**********************************
Elena Hung is the president and co-founder of Little Lobbyists, a parent-led organization advocating for children with complex medical needs. You can follow her on Twitter @ElenaHung202

Elena Hung
Elena Hung


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Leah
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Love it!! Last Christmas I was able to escape from my trached son for a moment to use the bathroom independently whilst my sister who was trained in proper trach care skills and techniques took care of her nephew for me. I went shopping last Saturday night with my partner whilst my sister actually babysat for a entire weekend. We had lunch in a restaurant and 2 nights away from our disabled child. On the Sunday we ate ice cream and took a walk by the riverside. I took a phone with me just in case. Our first day was spent at the hotel. We strolled around the square looking at the shops and ate at a local cafe near the hotel. It was lovely. My son got his tracheotomy at the beginning of last year it marked the end of his stay at the hospital in the PICU struggling to breathe independently. We were readmitted after I contacted the doctors explaining everything I was seeing.

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