This is my sister Sydney. Sydney is 11 years old. She has a condition known as Treacher Collins Syndrome. Treacher Collins is a condition that affects the development of facial tissues and bones. Sydney was born with an underdeveloped mandible (jaw) and nonexistent zygomatic arches (those are your cheek bones … I’m overcompensating here and making myself sound smart because after my last post, I feel like I couldn’t pass the 5th grade). Because her jaw was so small and set so far back, it obstructed her airway and she uses a tracheostomy to breathe. Sydney was also born without lower eyelids and had to have some grafted from the skin behind her ears. And speaking of her ears, they are very low set and very small and adorable. Because her ears are in this position, it affects her hearing. Sound cannot travel through the necessary channels to get to the inner ear. So, because of this hearing loss, Sydney uses sign language to communicate. Which is pretty friggin cool. She’s wicked fast when she signs. Our family has all learned sign language (some better than others … not gonna name any names here …. ) to communicate with her too because, how crappy would it be for her to not be able to communicate with her family?? That would super suck if you ask me. Sign language has its’ perks. We can curse at each other without anybody knowing that we have a potty mouth hand. And gossip about people sitting right next to us … providing that they don’t know sign language too … Totally kidding. I never gossip. Ever.
So, now that you know about Sydney’s condition and it’s phenotypic manifestations and why she perhaps looks “different” than you and I, let me tell you a bit about Sydney from a personal standpoint. Sydney is a person. Like you and I. She’s a little girl who has a family that loves her. She has feelings just like you and I … (if she’s anything like “I”, she’s got a LOT of feelings). Sydney has hobbies. She loves to watch Shopkins videos on YouTube .. which I don’t really understand. I guess I’m not with the “hip crowd” anymore but apparently it’s all the rage. All the kids are doing it. She enjoys gymnastics and eating honey buns. (My kinda girl right there. I too exercise only to afford my caloric intake). Sydney does chores in the house without being asked. She’s very sweet and loves her nieces.
Because Sydney looks different, she is the recipient of many whispers and stares and most relationships stop at this level. Many don’t get to see the true side of her. These whispers and pointing fingers she experiences daily make her feel isolated and alone. There’s a gap between her and the rest of the population. Within our family, it is insignificant .. nonexistent even. But when it’s noticed by others and in turn ignored – it seems to grow. And Sydney can feel that gap widening leaving her more isolated.
As a mother, I can totally understand this. If your child points at my sweet sister, it’s natural to want them to stop. You may shush them or remove them from the situation. And you may think that that is the best solution to the problem. No harm done, right? But that’s not necessarily the case. Ignorance is not bliss. As her sister, I know that what she really wants is acceptance. So as mothers, I think it’s so important that we help our children to bridge this gap that makes Sydney feel alone at times.
When your little one asks, “Mommy, why does that girl look different?”, tell them the truth. “We all look a little different and I’m sure she likes some of the very same things you do”. Or when he/she points and says “What’s that thing in her neck?!” Respond with, “I’m not sure, why don’t we ask her. I bet she could tell us lots about it.”
Encourage your child to smile at Sydney. Encourage them to greet her and ask her name. Encourage them to find some similarities that can bridge this gap. Ignoring may seem like the polite thing to do – but she already feels miles away from others. Instead of not saying anything, say something kind. Include her in the conversation. Tell her she’s beautiful .. What woman doesn’t like to hear those words?
We are all learning. Mommas and babies the same. And I am no exception. But I feel like I have an advantage having had this sweet spirit born into my family. What a blessing Sydney has been to our family on so many different levels. One of the things she has taught me is that I need to teach my children about differences of all kinds. I want my kids to know that it’s ok to wonder and ask questions about these differences, but that they should be asked in private so as to protect feelings. And that in the meantime, they can wave to the little boy in the wheelchair and help him feel noticed, and not for his differences. They can play with the little girl who has a trach, she probably loves to play. They can ask the boy about his braces and also ask him his name. We don’t have a don’t ask, don’t tell policy. In fact, we’d love for you to ask politely. We don’t want to feel unapproachable.
And if your kiddo says something that may be offensive, don’t be ashamed. Just remind us that you’re still learning how to ask questions politely. And then use that experience as a learning opportunity. I hope that we can all spend a little more time learning about this ever-important topic. Bridge the gap and be accepting of all physical differences. Because we are all children of God and deserve to be treated as such.
I would so appreciate it if you would pin any image from this post and share it with other moms!
Thanks for reading!