You may or may not know ‘The Rose Song’ by Olivia Rodrigo, not be be confused with ‘The Rose’ performed by Bette Midler. Both good songs, but both very different songs. I was driving to speech therapy with Hope this morning when I heard this song play. I’ve known about this song for a while, and I’ve loved it since the first time I heard it but it wasn’t until today as I looked back at Hope almost dozing off to sleep that I really heard the words and the “fight” that was in those words. The more I listened, the more I related the “fight” in this song, to the “fight”, Hope will face in life, and the “fight” I hope she has in herself to push through and break free of what people expect. Obviously, this song was not written about Down syndrome or disability, so not all of it relates exactly, but I wanted to share my thoughts that went with some of the lyrics.

“All my life, I’ve seen myself through your eyes”

Those with Down syndrome and really any other disability can often be given a personality by people who do not know them. People expect them to be one thing and underestimate what they can do and who they can be. It’s all based on things they see and hear, never giving those they are judging a chance to prove just how different they can actually be. It’s easy really for those being placed into these “boxes” to then begin seeing themselves as that person. It’s like anything that may be said about us. The more we hear it, the more we begin to believe it. If a person with Down syndrome hears over and over again that they are supposed to be this and that, well that’s what they are going to be.

“Wonderin’ if I am good enough for your time”

When you think you are less than you are, you begin to think you have less worth. Will Hope ever feel like this? Will she ever feel judged, and feel like she has to fit the mold people have created for her? Will she feel like she’s not good enough because she’s different? As much as I hope she doesn’t, there’s a great chance she will. We are doing everything we can to make sure she doesn’t, but we can’t change the minds of everyone in a day, it takes time, and we know she’s going to face judgement, she’s going to question her worth, and we will help her fight these battles when they come.

“Am I somethin’ to you and not someone?
‘Cause I feel trapped on this pedestal you put me on”

When you think about these words, they hit hard. How could anyone consider someone a “something” and not see them as a person? But it happens so often. People can refer to those with Down syndrome as ‘a Down syndrome child’. They put the disability first. The disability becomes their personality, it becomes who they are. They are no longer a person first, they are a disability. Ben and I are always very careful in the way we speak about Hope. Yes, she has Down syndrome, but Down syndrome is not what she is. She is a child first. We will not refer to her as a our ‘Down syndrome child’ but our ‘child with Down syndrome’.

“You tell me that I’m beautiful but I think that’s an understatement”

Being told you’re beautiful is not a bad thing. We think Hope is beautiful and we will continue to tell her that every day if we have to as she grows older, but we will make sure she knows there is more to her beauty than just what is seen on the outside. Beauty is more than just a pretty face. Beauty is in your character. Kindness is beauty, love is beauty, strength and confidence are beauty. We want to make sure Hope understands the full meaning of beauty and when Hope is older, if someone tells her she’s beautiful, I hope they are not just talking about what they see on the outside.

“’Cause I am more than what I am to you”

I feel like this is pretty self explanatory. It goes along with the first line where people expect one thing of those with a disability and don’t see the “more”. Hope is more than just a girl with Down syndrome.

“And I won’t be confined to your point of view
I’m breakin’ through the glass you put me in”

This is where the “fight” is in the lyrics. The fight to break out of the mold, to break out of what people expect, of what the world expects and show them that there is so much more. This is what we are fighting for, for Hope and it’s what we want Hope to fight for as she grows. We want her to fight to smash the glass, and show the world just what she can do.

Our hope for Hope is that she doesn’t have to fight for her place in the world, for people to understand her, or to believe she is more than what they first see and believe, We know in this world, it is unlikely. But… if we can start the change, start helping people see the ‘more’, then one day perhaps those like Hope won’t have to fight so hard and one day perhaps there will be no “mold” or glass confining them.

And if you dare listen, here is my version with some slightly adjusted lyrics. Keep in mind, I don’t have any fancy equipment to make myself sound amazing… and I only really learnt this today so it’s not perfect, but I’m not perfect either… so I guess it works.