I was a spirited child when I was younger and it was slowly taken away by somebody who wanted control. My childhood was stolen same as my mind and my body. Looking back I think little pieces were broken off until I was small inside. I will never understand how so many people could do what they did and still sleep at night feeling no pain. Laying restless often I don’t wish pain on them, but sometimes I wish they felt the way I feel in the darkness and the fuzz of the past.
I loved colours, I loved stories, I absolutely loved animals, and I loved smells. My favourite smell was electricity in the air right before a storm. Feeling the small buzz on the skin I could always tell when it would rain down and the calmness it left in the soul. I loved the lady bugs and their bright red shell on their tiny immaculate bodies. My mind was great but it was also drugged into mindlessness. You couldn’t tell on the surface but I felt it. I felt everything and I felt small much like the lady bug.
A bee is a small insect with fuzzy bodies. They are busy but effective little creatures. The sound they make is exquisite. I was six years old when I imagined being a tiny honey bee flying away to a hive to produce something new. Watching the bees collect pollen from flower to flower care free but with so much to do. I was six years old when my mom came back and got in a fight for a reason I don’t remember. Six year old me was being watched by a man named Derrick we called him uncle. Tiny honey bee is what I wanted to be in the basement being watched by a monster named Derrick. I left in my mind to smell the dandelions the honey bee and I loved so much. Six year old me would soon be put on several drugs from Derricks mother, my foster grandmother.
The cricket is a musical instrument. It rubs its legs together to make a chirping sound. If you sit still in a field, you can hear the cricket orchestra sing loudly with pride. For a tiny bug it has a mighty strong song. I would think of crickets while my grandmother would lie about my intelligence to the doctor that never asked if it was true. Fielding the cricket song as she claimed I was angry and out of control. I danced to crickets in my head as children called my Ritalin; I was but the blue pill being put into my body, my mind was not mine to have. Three pills each for ADHD, FASD, and psychosis. I heard crickets when the test proved that only one of these were accurate. I have ADHD but the lied continued to be carried out by a mentally sick woman. There’s a tinge of sadness to the cricket’s song: partly due to it being so quiet on its own. It’s a lonely song to play when people don’t listen fully to the orchestra of the cricket.
Most people are afraid of spiders when really they are surprising creatures. Some are harmless while others carry a deadly poison. No spider web has the same web, however like humans the spider comes in all forms, and designs their creations. I admire the spider because the black widow represents the deadly creature of abusive parents like my mother and grandmother. One bite and it’s fatal for the prey. If you get a daddy long legs, you will have an innocent spider who only eats mosquitoes. They look scary, but they have a romantic notion to protect the home they inhabit. When my grandmother chose to take my siblings and me away for a while, I would find daddy long legs and watch it climb high on the walls. She hid us from our grandfather and any one looking for us kids. The black widow didn’t care how much poison she spread, only if she could spread it on her terms. The dadddy long legs undaunted by the black widow climbed high to live another day.
Bugs are amazing creatures. They hold incredible senses beyond what someone sees and hears. I wished as a child to be a bug and be able to live life with purpose. Much like a bug somebody bigger could come around and squish you like it didn’t matter. I felt squished and the people who did it just kept going. How can a tiny creature with offerings of greatness and intrigue be killed by a thoughtless act and have it continue with no consequence? If I had a time machine I would watch the bugs with tiny me and show her she was just as strong as the bugs she seen in her mind. I would lead her to the chrysalis and tell her butterflies are the change of spirit she should love one day.
My husband recently said that hes been trying to romance me and i’m not reciprocating it. Its a fair statement on his part but I wish he would understand why I’m not in the mood. It’s not his fault but at the same time I wish he would see I’m at my least sexy I’ve ever been.
This conversation of being romantic threw me mentally. I used to be a sex craved monster. I loved it every single inch of my body and my thrilling adventures exploring. The appeal the cat and mouse chase all of it I thrived in being sexy. Then came along mother hood. I love being a mom, however I’m not thriving in wanting any human contact at the end of the night. I replaced my need to have nightly booty calls with just needing space and my cats. Mother hood has fried my brains and made any touch of the skin after nine pm feel like needles.
I used to go five rounds a night followed with a morning of breakfast in my underwear. Now my morning consist of me wearing day old sweat pants or black leggings and a bra of five years ago. I used to stand at my counter pre kid era and eat with grace by plating my new recipe, until recent my plating consist of whatever quick breakfast my kids like. Some days I don’t get to eat until supper time. My conversations with my husband before kids had substance. we could hold a conversation and it meant something to me and to him. We had time for sexy conversations not conversations about if today will be the day our three year old will poop on the potty. I feel like our conversations are either about work or about kids. The sexy substance of wooing my partner have been far and few between. Even our text messages are consisting of doctors appointments for our child with disabilities or mile stones for our toddler. Most of them are now are we going to the in laws for dinner. Then during the day; now that i’m back to being a stay at home mom I am having kid conversations all day. I’m talked about at nine in the evening because I have talked about trucks and Pokemon.
I’m mentally and physically exhausted from being a stay at home mom. If i’m not being a referee of two boys, i’m negotiating the use of a toilet. I’m not sexy when I have peanut butter hand prints crawling up my pants. My sexy is depleted in this gross mom bun on top of my head with my hours old coffee mug firmly gripped in my hand. My thoughts to my husband are that I’m not sexy because I just clogged the toilet twice and changed kitty litter while singing the potty song. Everything is mess or tears or just chaotic energy. Then by supper is the witching hour our kids go insane. Bonkers completely bat shit crazy. If I’m lucky and your home on time I might get fifteen minutes to breath before we do supper and bedtime. I’m not mentally all there for my partner during this time. I feel like I tap out and just want some space.
It’s not his fault and I know it’s my fault to not put the time into romance. It’s hard to be that sexy woman I once was. He once was my soul and my time. Then we had two boys who have needs beyond the bed sheets of privacy. My dignity went out the door the minute I pushed out those sweet little boys. I cant look downstairs and the parts of me that used to have the most fun. Looking at my body I want to cry, I don’t understand how my husband can find it sexy. It’s wrinkly in the tummy from our last, my boobs sag, and I don’t look like the woman he once caressed for hours on end. As many times as I try to feel like a goddess I feel depleted. I don’t know who I am right now and I cant out think how any one would want me.
It’s not easy being a mom and a partner. I’m battling with more than my husband knows. In my mind I’m not attractive. I feel gross and mentally I feel loopy. I’m not me, the me that is attractive is someone who likes themselves enough to give a piece of it out. I want to give the time to my partner because he deserves it. The human contact we all need. He deserves to be shown how much I love and appreciate him. I wish I could get out of this mom funk and out of my own brain to give him what he wants. It could be so easy yet it seems so far out of reach. Right now I’m at the least sexy I’ve ever been.
I was cruising Facebook today and a strong important video from a concerned mother streamed on my screen. Her message broke my heart as I too shared similar feelings regarding the subject of concern. The concern was targeted at TikTok users acting out autism and other disabilities ignoring how disgusting and ignorant and distasteful these videos are. I, too, share her hurt and frustration with the lack of empathy people show towards disabilities. My son is special needs and his disability is not a punchline or humorous.
I can’t fathom why people think making fun of disabilities is entertaining. Possibly they think that they are being comedic but in truth…their actions are damaging to a community of warriors fighting battles unimaginable. Making fun of disabilities is a low act of ignorance and it in dignifies the human beings who struggle every day with bodies that fight themselves. The horror of watching someone fake a meltdown thinking its funny should place themselves in what a true meltdown is. To the ignorant girls and boys making fun of stimming or echolalia I implore them to sit in a classroom and be stared at as they are an alien. To the disheartening video creators who think this kind of bullying is appropriate, well, simply its part of the problem.
Disability is not a mockery it’s an everyday battle for the people facing them. It’s a battle for the advocates to get rights for the human being basic rights. Rights that should be given as equal chances of “normal people”. These videos take away the rights of disabled. Other people had to fight for my sons right to attend school and not be institutionalized. People, good people fought for his right to proper medical care and specialist to help him. One video or more demoralizes the battles fought by good people. No matter how far people get to have disabilities recognized others create a monster of destruction to tear down basic rights and understandings. These videos are a reminder of why our world is behind in human compassion and understanding.
I’m disgusted, angry, and at a loss that human beings would treat one another like this. I have a dark sense of humour but this is not funny. It’s not something to make light of and honestly I don’t understand why people would think to make something like this in the first place. I’ve held my son with pain in his heart because other children told him to kill himself because he was different. I’ve watched my son have meltdowns that are so scary for him. I’m not religious but I prayed for safety and love for him. Watching his body and mind battle the strong spirit within him is devastating. I’ve had to fight teachers for him to understand the brilliance in my sons mind instead of them only seeing a disability. I love my son more than anything in the world so to see people take away and destroy people like him without knowing the damage it causes is disgusting. Its enough when someone’s body hurts them it’s another when people ignorantly add to the trauma of hidden battles. My sons autism is not a punchline.
Today was nerve-racking as we had to make a call to my sons rheumatologist. A few days ago my son was awoken at night because he was really sick. Juvenile arthritis reared its ugly head back into our lives, it never really leaves but it likes chaos at my sons expense. I hate arthritis because no child or person deserves such an ugly disease.
I have talked about arthritis in previous blog post but I can never truly get the words out on how much I hate watching this disease hurt my nine-year-old child in vicious ways. When I envision arthritis in my head it would only be described as a glob of goo with malicious smiles smearing across its face. Everything about this disease is horrifying because as a parent, the feeling of not being able to ease their pain is heartbreaking. Telling your child they cannot do certain things because this disease takes away from it is gut wrenching. Watching your child not being able to walk for more than ten minutes, or watching them be unable to do things regular children can do is indescribable.
With each appointment, each version of medication not working, each symptom that can change any day is unfair to the child that lives with it. I’m angry with this disease so angry that sometimes it breaks me as a parent to my brave warrior. The pain is one thing but holding your child because he is depressed because he feels his body failed him make you as a parent feel like your failing. I’m a mother who has an amazing son and I feel like I cannot protect him from the bad in the world because it is his body attacking him. The immune system which is normally marvellous in the jobs it performs failed at the task of being my sons defender. I’m angry; I created this failing body. I grew this body for nine months and the first day I held him I promised to keep him safe. Failing in that promise is beyond my control, but his body and immune system is failing non the less.
Being scared of what’s next is part of the deal when you have a sick kid. Before every appointment even though not religious: I pray for good news. Especially during this difficult time of being in a pandemic. I remember the first time we got our diagnosis I promised my son I would be there for every appointment, so he won’t be scared. Praying and setting mental pleas to the universe it went unheard. I cannot be there for my sons injections. His stepdad will have to take him and I will keep pleading with the universe for him to safe. This disease is scary for everyone, yet somehow my superhero of a son finds a way to stay beautiful.
Three nights ago I was holding him while he threw up and had a bad case of diarrhea. Last week he was in so much pain from walking half a block to the mail box. He said to me last night I hate my body mom it’s not nice to me. Followed with why does my body hate me because I want to love it but it’s hard. I wish there was a magic wand I could wave to take it all away from him. Instead, I will hold him longer and try to be there because he needs me to be strong for him.
I will say one thing that I admire out of this whole nasty disease is the children who live with it are so brave and fearless. They are true superheros in the face of adversity. My son and other children living with this disease are stronger than words can describe. I admire his courage and faith that he will kick this diseases butt one day at a time. Even though this disease is taking the piss out of our lives right now I know in my heart my son is the strongest little man and I can wish to be half as brave as he is.