Dear Kaya: A Letter to my Daughter

Dear Kaya,

I try to tell you every day, but sometimes I still wonder if you know just how special you are? Do you know that you're the one who keeps me sane.... even when you're driving me crazy? I wonder if you realize how truly unique your life experience is... even though it's all you've ever known.

Baby Kaya didn't know what she was getting into

You and I like to joke around, we call you the bologna in the autism sandwich. There you are, a middle child, the only girl, squished between these two boys who take up so much time and receive so very much attention. I try to tell myself that you don't define yourself by them... that you are more than just the sister of two brothers with autism, the only daughter of a single mom.

I know there are so many days that I can't give you the time and attention I want to, that I will commit to doing something with you, only to have it interrupted by yet another meltdown. I am guilty of being short with you because I am stressed out by dealing with the boys. It's so counter-productive to lose my patience with them - it always escalates the situation. I know how often it's you who ends up finding the end of my rope.

The bologna in the autism sandwich

But I want you to know that you are my best friend.

I know sometimes you're envious... the boys get to do so many things and get so very much attention. They see therapists and doctors and researchers and specialists, and I know you wish that sometimes all of that was about you. You see them receive special funding to get equipment from charities and you wonder why it isn't for you.

I know that because autism is a social disorder, you don't get the type of sibling interactions that you see your friends have; or the kids on Family Channel who always seem to be together. You try so hard to get Liam to play a board game with you, or for Phoenix to give you cuddles. I know how frustrating it is when you just can't seem to get through, or when the boys get angry or mean and ruin all the fun.

But I want you to know that you are their best friend.

Leaving on a jet plane for Dreams Take Flight

I want to remind you of the amazing things that you've experienced in the past few years. Remember Dreams Take Flight? What an incredible experience you had, a 24 hour whirlwind trip to Disneyworld. You rode on a plane for the first time, met some celebrities and got to ride all the most exciting Disney rides. What an experience. I remember the day you were nominated for the flight by the Young Carers Program, who recognized how many obstacles you overcome everyday just to be the best sister and daughter you can be. I was so anxious all day that you were in a different country than me - so far away - so grown up and independent. I stalked you on social media all day, bursting with pride for your journey and wishing the hours would pass slowly for you, but quickly for me. When you came home you brought gifts for your brothers, they told me later that you refused to buy anything for yourself until you got something for them.

But I want you to know that you were chosen because you are special.

Celebrity Status

The proudest moment of my life was when you were chosen to be the spokesperson at the Dreams Take Flight Gala. What an amazing night we shared - just the two of us. You were a true celebrity that night, the guest of honour, the most important person there. You glowed in your red dress and leopard print coat. I dressed low key because the spotlight was all yours. And you worked that spotlight like a veteran. Do you know that you were helping other children like you that day? Do you know that your bravery, your story, your presence alone encouraged donations to a special, worthwhile cause so that other kids can experience what you did?

But I want you to know that you deserve everything and so much more.

I love to watch you love medical shows, and study all about being a nurse. I love to hear you talk about how when you grow up you will be a labour and delivery nurse. I am amazed by your drive and how well you understand yourself already. You are a high energy kid who doesn't need much sleep. You are stimulated by the unexpected and thrive on challenge. You will be the best labour & delivery nurse I can imagine, and you will continue to change lives every day.

But I want you to know that you can be and do whatever you put your mind to.

You once described the difference between a typical child and their sibling with special needs. You said that it was like he had all the diamonds in the world and you had all the gold. You explained that diamonds aren't necessarily more valuable than gold, but they get more attention. I am amazed by your wisdom.

And I want you to know that I am grateful.

My life without you in it would be in black & white. You are a thousand colours, A million beams of light. Your vibrance lights my world.

So thank you. You are amazing.

Love Mom