Social Media: The good, the bad, & the ugly

Social media is a tricky thing to navigate for anyone. It’s much trickier for people who have children that don’t “fit the norm”. The fact that I even have to write that bothers me, but it’s true. I have been sharing my family and our story on social media for a year and a half now. I am grateful we have a platform to raise awareness and connect with other families. Social media is an amazing tool in that regard. What many don’t realize though, is how negative people can be on social media. Sure, we all know that mean people exist, but you don’t truly grasp how horrible people can be until you experience some of the horrible things they say towards your child.

Some of you may or may not know that a few weeks ago I shared a video of my children on Tik Tok and it went viral, it’s currently at over a million views. I was not prepared for that at all. Never did I ever think that would happen. But what I really wasn’t prepared for were some of the comments it received. Ew. Get this shit off. No one wants to see this. Alien. No thanks. These are just some of the comments that were directed AT MY CHILD. Now don’t get me wrong – the majority of the comments were kind and loving. But for some reason, as a mother, the few evil ones really tear at your soul. You are witnessing pure hatred being thrown at your child who you cherish so much. It’s a feeling I can’t quite describe.

Before I get the classic “You chose to put your family on social media, so with that comes negative people and comments.” Go back and reread that statement. Why is that even acceptable to say to someone? I receive comments like that all the time and it’s not acceptable. Why are we accepting that people behave this way? Why are we criticising the family who chooses to raise awareness about their child, and not the actual people doing the bullying?

As a whole we can be better. We can not only share our families stories and advocate for inclusion, but we can also stand against hatred and evil. Together we can say we are not standing for this and that children who are different matter and can teach the world alot – especially in todays day and age.

I was hoping and praying that my experience with nasty comments toward Owen wasn’t going to be a common experience among other BWS moms. Unfortunately it is more common than I had hoped. I feel so driven to share with anyone I can the comments that other mothers have faced towards their children. Why? Because it’s important and no mother should have to hear these ignorant things about their child. We need to make others aware that comments like the ones I am going to share are not acceptable These children are a BLESSING to this world. (I’ll scream it louder for the people in the back if I have to)

When I asked other BWS mother’s to share their experiences with negativity on social media, here are some of the responses I received:

When sharing your child on social media what are some things you worry about?

I worry about those who say she looks normal – so they don’t believe she has a syndrome.
People being rude.
That I’ll be accused of attention seeking or cruel comments about my daughter.
People thinking your sharing for attention rather than awareness.
People being mean or thinking my daughter is weird or funny looking.
My son being judged for being different.
People seeing my child as mentally ill.

What are some negative comments you have experienced from strangers on social media?

Your child is disgusting.
Do you wish your baby was normal?
Wow your child is so big. Maybe you should stop overfeeding her!
Why is she sticking her tongue out all the time?
People commenting on my daughter’s tongue and eyes. They have assumed she is mentally challenged.
People commenting that my daughter must be older than what she really is.

What is one thing you wish would change when it comes to negativity people can have towards our babies?

I wish they could spend just one day in our shoes.
That people become more understanding and accepting.
I wish people would realize how scary it is to have an increased risk of cancer, instead of focusing on just the physical aspects of our BWS children.
That people would keep their mouths shut if they don’t have anything nice to say.
I wish people would stop thinking we are putting our kids through unnecessary medical things.
I wish people would learn to be kind and accept children with differences.

Why do you think it’s so hard for others to accept our children and their physical differences?


What advice do you have for the new BWS moms who struggle with fear about strangers seeing their child and their physical differences?

Remember your baby is beautiful in their own way you were meant for this strength.
It can be tough but know that they are beautiful regardless of their differences and it gets easier with time.
It’s hard at first, but it gets easier.
Try not to let others get to you. I know it is hard but just love your baby and forget the jerks!
Don’t let someone’s comments ruin the amazing newborn bubble you’re in, time flies too fast!

One thing you will learn through not only my family’s journey, but other BWS families is that we are PROUD OF our BWS babies. Your negative comments aren’t a reflection on our children, but a reflection on yourself, and the lack of self esteem you harbor. One thing is for sure – our babies are strong, resilient, and have a lot to teach the world. Hopefully the world is ready to listen!

Owen smiling ear to ear on the way to the doctors. Social Media trolls wont get to him!

Live Large & Stay RARE.
XOXO Theresa

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