their big brother, my friend


{image is a photo of Conner flanked by Katie and Brooke at Disney World last year. He is, of course, wearing his Mickey ears.}

This morning, I woke up to find the following note in my inbox. I read it, then read it again. With tears threatening to fly free, I wrote back and asked Conner if he would be comfortable sharing his words here. More precisely, I wrote this:

Oh, Conner. This is one of the most beautiful things I’ve ever read. I cherish my friendship with you and the wisdom you share. I know I’m a lot older than you and much closer to your mom’s age than yours, but you teach me so much.

Would you be comfortable with me sharing your words on Diary? Please don’t feel pressured if you’d rather not — I never, ever want you to feel like you can’t write to me privately and know it will stay that way. But if you are comfortable with the idea of me sharing this, I would really, really love to.

You are a gift, Conner. And the pictures you paint with your words are truly art.

Conner generously agreed, which means that you get a gift this morning too. Before you read further, I have a request. Take a deep breath. Slow down. Listen.

Now read.


Ms. Diary

It is me Conner. I do like your post today. I was worried once about my life in the tomorrows.

My body and my mind was upset because I thought I had to be another someone. I would rock and no words would come.

My mom knew like she does. She sat on The floor when I needed her with me but not too close and she hugs me when I Need her scent and feel. I know I can be me.

I may live with my mom our lifetime And that is our choice. I will not let people who think different make me different. Mom says like you that she is blessed to have me. If me wants to move and live With a friend or by myself mom says she will be the first one to assist me. And if I want to stay here with mom like now I feel then mom says we will discover each day one magical day at a time. I like to learn and I have many things I will do someday.

I don’t like it when people tell me or others what is right or wrong to live. Do they hear every noise in the room? Do they see people speak words from their mouth but when the words fly from their mouth to my ears their words are only sounds. Do their fingers not always move in rhythm with their hands? And do the stars Shine so bright you cant help but wish on them? Can they hear the sound of water that makes you want to jump and the colors of life that make you want to touch? Does Mickey Ears give them the confidence to write when words wont come from their mouth and give speeches when they will?

This is my life and I love it. I have struggle days and I have happiest days. The tomorrows can be scary. I learned my yesterdays are part of me my todays are who I am and my tomorrows are where me and my mom are going.

I hope this makes sense because I want you to know Brooke and Katie are lucky. And if they want a big brother I will never be far away.

Conner, my girls could ask for no better big brother, and I could ask for no better friend.

Follow Conner here

See his video here

Read about Conner’s Law here

12 thoughts on “their big brother, my friend

  1. Connor, dear, you brought tears to my eyes!

    Jess, thank you for all of these posts. This issue has been weighing heavily on my mind of late. All of this makes so much sense. I especially appreciate the comment on the original article that discussed the difference between self-sufficiency and independence.

    Thank you for sharing your lovely community with all of us!

  2. Conner, you are awesome. I love the way you use words to express yourself. It’s clear you care so much about Katie and Brooke and that you love with your whole soul. I feel very lucky to have gotten to read what you wrote!

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