Light it up Blue, Light up my World

When I was a child, I had a close call with drowning at a place we called The Blue Hole. It was a rock quarry where we'd swim and picnic, and my brothers and uncles would prove their lack of sanity by jumping off the bluffs. I remember jumping and splashing, and stepping off a rock into water about eight inches or so over my head. I couldn't swim. The water was crystal clear, and I could see my mother and her best friend, Sheila, standing there talking as clearly as if I were topside. My mother says they looked over and saw my big eyes looking up at them, bubbles coming from my mouth and nose to the top. Sheila was closer, and reached over and pulled me out of the water. I hadn't aspirated any water, but had they not been standing close by and happened to see me, that could have ended very differently. One day in the last year or so, I had the realization that I felt like I did that day so long ago almost every day. My head is under water, I can see everyone else above the water, they can also see me, but in this image in my mind, they don't see the water. They don't see me drowning. Grief is a strange thing. Grieving for someone who is alive is even stranger. Cyclical grief is even stranger still. You're constantly moving through all the stages, then starting over. As most of you are aware, April is Autism Awareness Month. I saw a meme that said, "April is Autism Awareness Month, but for me it's also January, February, March...." and so on. It's so true. When it's the most pressing thing about your daily existence, you certainly can't be unaware. There is so much I don't share. And although as I and anyone who deals with Liberty often can tell you, she is a delightful child...I'd by lying if I said it wasn't hard and stressful. When people ask me about her, I don't tell them the things about her that a neurotypical child might be embarrassed by. I don't talk about the unhygienic, gross, frustrating, annoying, inappropriate, and sometimes painful things she does (she isn't mean, but she does things out of frustration at times). I don't talk about how we can't turn our backs for a second or she'll make an epic toddler sized mess. I don't talk about how there are certain situations she just doesn't fit into, so if we can't get a sitter, we don't go. There are many things we don't do, many places we don't go. I don't take her to band concerts. Rarely to a wedding. Our lives revolve around her in so many ways. Speaking of babysitters, I was always hyper vigilant about who I left my children with, but I had no idea just how obsessive I could be until I had a child who couldn't tell me if someone was mean or neglectful, or worse. One big paradox with us "special" parents is trying to balance the crushing loneliness and isolation, not because we don't have people, but because hardly anyone we know lives in "our world"; with the desire to self isolate because we are physically, mentally, and emotionally exhausted. However, when I feel at my most stressed, my most broken hearted, I remember that my experience of her autism is nothing compared to what she goes through every single day to just try and live her life. To communicate. To make her needs known. In spite of this, she is almost always smiling. She gives the best hugs and kisses on the planet. She loves her family so much and thinks her big sister and brother absolutely hung the moon. She is sensory seeking, so while that means she makes messes, she also lives life wide open and loves fun more than anyone I know. She's absolutely fearless. And she's my hero.