“Mom, I marry Luke.” Nichole said.

“Luke from the show Jessie?” I said.

“Yes. Luke my prince. That my house.” She said pointing at a house as we drove to school.

“That’s going to be your house?”

“Yes.”

“Wait, you’re not going to live with mom and dad?”

“No mom. That my house. My prince. My dog.”

There was a golden retriever outside the house she pointed at. I have a suspicion the dog was the main reason she picked the house. I won’t be surprised if Nichole has a dog when she grows up.

Nichole and her dog

I felt a little sad she’s already thinking about her independence. Yes, I know, she’s only eight years old, but she has Down syndrome so I’ve wondered if she will live with us forever, or at least longer than her sisters. At this rate, she seems to be the first one ready to move out! And while there was a time I was not a fan of the idea of a child living with us forever, I had accepted the idea that she might. Actually, If I am totally honest, I looked forward to her living with us forever. We love her, but we also really like her. Her personality, her sense of humor, how much she enriches our life. The joy she brings to the simplest moments, from making popcorn to going to the grocery store. Thinking of having her living with us forever is something I looked forward to. She’s not a burden to us, she’s a joy, so why wouldn’t we want her around?

But, Nichole is her own person. She has her own ideas and dreams. She dreams of a future where she has her own space, where she’s married to her crush (which little girl does not), and she has a dog.

The truth is, it’s really hard for me to let go of her. It’s hard to think of her growing up and moving on without me.

Because Nichole has Down syndrome she’s needed me more than her oldest, typical sister. The reality is Nichole is more vulnerable, she’s behind in her development, and I understand her speech better than anyone else can. I feel this fire in my belly to protect her, to fight for her, to stand up for her, to help her move forward in life.

I am her advocate at school, I champion for her, I believe in her potential.

If something doesn’t seem right I ask questions, I research, and I push for answers when necessary.

While some people might look at my child and be thankful it is not their kid who has Down syndrome, I feel like the luckiest mom in the world.

And once in a while I think of what she will be like when she grows up. What her school activities will be, what her hobbies will be, her interests, her job. Who will her friends be, how will she do in school, will her speech improve and allow her to have better communication? Who will my daughter be when she’s 15, and 20, and 30?

You know, I’ve even wondered what she will look like – and sometimes when the light is just right, I can see who she will be when she’s a teenager.

But one thing I know won’t change: the fierce instinct in me to protect her.

I want her by my side, but I know that would be selfish of me. Nichole has her own life, and as she grows up she will have her own dreams, her own goals in life. My job as her mother is to allow her to be her own person. My job is to let go and let her spread her wings and watch her fly.

So what will life be like when she grows up? I don’t know. But she’s my guide, I just have to follow.

But that won’t be easy for me.

Do you parent a child with a disability? Is it hard for you to let go?

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