Seeing Your Child with a Disability

Today was the first day I looked at Aria, and saw a child with a disability, and it broke my heart.

Let me explain:

Since she was diagnosed with intractable epilepsy and focal cortical dysplasia with polymicrogyria, I’ve always known that she was going to have a learning disability, in the least. It was just a matter of fact, and I accepted that a while ago. I’ve always done my best to work with Aria’s therapists and doctors to stay on top of her development. For her birthdays and holidays, I’ve always requested educational toys to help her along; trying to give her the best possible chance. And I still am, that hasn’t change. When she came off the pharmaceuticals over a year ago, began Haleigh’s Hope and finally achieved seizure control, the developmental gains she was making every week were astounding. She was becoming more and more like a neurotypical child, and she still is. Just in the past two weeks, she’s begun to sing songs and read along to her favorite books; all with approximate words and sounds, but amazing progress nonetheless. Up to this point, I’ve forgotten about her delay, and how it will affect her in the years to come.

I was talking to someone today about Aria, and they asked me when she’s older, how is her condition going to affect her getting a job and being an adult? Surprisingly, this caught me off guard, and I realized it was something I had stopped thinking about. Don’t get me wrong, it’s not like I’ve pushed her future education to the way-side and stopped caring, I’ve just let my guard down. Cannabis has completely changed our lives. It’s given her the freedom to just be a kid, and enjoy life, and it’s given me the ability to relax a little, actually sleep at night, and just sit back and watch her grow and expand her mind. It’s been so amazing, that I’ve forgotten to think about the future.

It took me a second to collect my thoughts when they asked me this. I said that her disability shouldn’t significantly affect her ability to “adult,” providing we can maintain this control as she grows up. I pondered this question, and my answer, the rest of the evening. As she was getting ready for bed, it hit me. I was watching her play in the shower, approximating the words for Twinkle Twinkle Little Star, as she lined up her ducks to walk the plank. I gawked for a moment, realizing how much she’s grown. Her hair is longer, and her facial features have changed. She looks older. As I’m looking at her, and hearing her sing, I see my child with a disability, and I cracked. I was heartbroken for the struggles she will endure as she gets older, and the bullying she may encounter; but at the same time, I was heartfull for the amount of progress she’s made in the past year. Yes, I see my child with a disability, but I also see my child who is finally developing more and more of a personality, who is learning everyday, who is excited for school and making friends, and I see my child, whom I will never give up on.

I do believe that with persistence and help from myself, her teachers and therapists, that she’ll eventually be able to overcome her learning disability. When I say overcome, I don’t necessarily mean she’ll become completely neurotypical, but rather, being able to live with her disability, accept herself for it, and be stronger because of it.

I see my child with a disability, but I also see my child persevering. So I have to thank the person who asked me that question today, because it made me stop and realize how much Aria has overcome, how much more we have to endure, and how bright her future can be if we keep at it.

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