Plum Grai, 18-year old sister to 21-year old Syngapian McKaela Bensch, is currently studying forestry at Southern Illinois University. She recently posted this letter on social media after heading to college and missing her “big little” sister.
I promised myself a long time ago that I would never get embarrassed to “live in the moment” with you.
I promised myself that I would always play dress up, no matter where we were.
I promised myself that I would never let anyone do you any harm, without me going “grandma laura” style on them.
I promised myself that I would always help you overcome the obstacles that you face.
And I promised myself that I would never give up on you.
I haven’t spoken on your diagnosis yet because I didn’t know what to say. At first I was angry. How could God give my sister an irreversible, painful thing that she would have to live with forever? How could he put us in the position to guide you through it?
How could he give you a disorder that there was no way out of?
No cure, No peace, No freedom from this.
I realized that there is life beyond that diagnosis.
That you were truly pure, inside and out.
That you would never understand and so we would always be there for you.
That you would never “give up” on us and always see the good.
I was so angry that you would never tie your shoe, or ride a bicycle, or even be able to go swimming on your own.
I never resented you, you were my baby, my one true supporter, my big but somehow little sister.
My “always there” and my “midnight snack buddy.”
I just couldn’t understand. And I still don’t.
I don’t know why God chose you, or us, but he did.
I don’t understand his plan but I am in it for the long run, right beside you.
Because even though there isn’t a cure right now, I can hold on to the hope that you will never change.
That you will always be my best secret keeper.
And even though it feels like we are in a canoe in the ocean sometimes, I can see the way you look at us when it’s all over. You really do love us with every ounce of your heart. And that’s all the peace I could ever ask for.
And finally I realized that you didn’t need to be free. Because you do not care about the way people look at you or the way they think; you just need to be loved, and believe my baby girl, you are so loved.
I had to make a new promise to myself recently, that I would never stop trying to understand.
I will always try to look deeper into your brain because I know that you cannot.
I will always try to be an advocate for you because I know you cannot do it yourself.
You can’t change. But I can listen, and learn.
And I am trying my best to do that right now.
I am telling everyone I meet–professors, friends, and even just the random lady in the library–about you.
Because I am so so proud of you and how far you have come.
And I hope to bring awareness to #SYNGAP1 while I am at college.
I can’t promise to “find a cure” or “change the world” for you.
But I can promise you that everyone here will know about you and how hard you have fought to get here. I promise that I am trying my hardest to get people to understand even though I can’t completely understand myself. I can promise that I will never stop fighting for you.
I can’t promise I will never get frustrated with you, because I do. But I can promise that I will love you unconditionally forever and always.
I’m not angry anymore,
I’m just trying to understand.
And I will love you every step of the way.
Love – your biggest, little sister.
Editor’s note: Enjoy the photos of Plum spending time in McKaela’s world.