Thursday 25 July 2013
Wednesday 24 July 2013
Fun House Mirrors, a Reflection on Being Physically Different
Subtitle: Why discussions about growth hormone therapy for my son get me riled up and angry.
I am short, not shorter than normal, not short for a girl. I am a dwarf, by medical definition.
When the girls in the locker room called me a troll doll, this is part of the reason why.
I have always been different. Not just different in my personality, because that is certainly true, but physically different than others around me.
Different in a way that it makes people uncomfortable. I once had a boyfriend when I was a teenager break up with me because he said he could not get over the fact that I had the body of a child. Seriously, I am that short. I weighed 85 lbs at the time. He was right about looking like a child.
I used to hate it. I used to look in the mirror and pray to grow. I had family members mock me and say that if I ever hit 5 ft they would buy me a car. Another suggested it was my thyroid and took me for testing, searching for a medical reason for my difference. I would cry myself to sleep at night, praying to grow just enough to be normal. Enough to stop getting shoved in lockers and locked in. Enough that people might think I looked pretty instead of like a freak.
I hated myself. Oh how destructive self loathing could be, still is at times.
Then one chilly night, something terrible happened and being short saved my life. Looking like a child was my advantage and my gift.
After that I saw it as a small blessing. I accepted it. I embraced it. Tyrion (the imp) in Game of Thrones tells John Snow, “Never forget what you are, for surely the world will not. Make it your strength. Then it can never be your weakness. Armor yourself in it, and it will never be used to hurt you.”
So I did. I owned it. I armoured myself in it.
Last week I stood in the fun house with my kiddos and looked in the mirrors. I was struck stone cold by the one that distorted my image into a tall, slender woman. A stranger stared back at me. It was as if I was looking into a parallel world that my wish was granted. That woman was not any happier, not any better. Just more normal looking. A woman without difference that might have defined her, might have given her an edge, a compassion for others with physical struggles.
That is not me. I am not a woman without. I am a woman with definition, embracing difference, living, loving, laughing, unafraid. Why would I ever again pray for that to be taken from me?
Being small, being different has given me a perspective on the world that being normal never would have. Being small is not a death sentence, it is not a tragedy.
Why am I writing about this? Why am I labelling it 22q11 deletion, when I do not have the syndrome (my son does)?
When we first started going to specialists for my baby, much of the talk about about his low levels, still normal range, but low, of growth hormone. The suggestion was growth hormone therapy which is a daily shot until he would be out of puberty or reached a desired height. The concern was that his predicted height was in the 5'3" range.
Let me just remind everyone that I am just 4'9". His predicted height is 6 inches taller than me. Predicted.
There are side effects of growth hormone therapy, risk to the heart specifically. Risks to the liver. Risks to the thyroid system. Risk to all sorts of physical systems.
You know what risks being short has? None, unless you count being bullied by assholes as a medical condition and it seems that a lot of the medical community actually sees this as a legitimate concern.
If the problem is really that assholes are that much of a threat that I would have to make my non consenting child endure daily needle injections and risk serious side effects to his health then I propose an anti asshole shot instead. I am serious. The kid who teases and tortures another child over a physical difference is the problem folks, that child is the broken one. Let's collectively turn our attention to fixing that real problem instead of jacking up my kid with synthetic hormone shots and let's also be real for a moment and realize that not being short is not a free pass out of being bullied because that isn't the root of the problem anyway.
It is different for boys though. Like hell it is. Yes, I am angry about this. My father isn't much taller than me (yes, it runs in my family) and he is a Life Flight AirEvac Pilot. My brother, also short in stature is a National Guard veteran who did a tour in Afghanistan. My grandfather on one side was an oil rigger, on the other a carpenter. The men in my family never let being short hold them back, instead they used it to their advantage. Coal miners, oil riggers, shrimp boat captains, farmers, pilots, firemen, poet, lumber jack, soldiers, sailors.....men every single one of them short.
Why should I take that heritage from my son? If he is only 3 ft tall then he will still rock this world. There are opportunities available for people who are short that are not open to tall folks. Movie roles, jockeys, divers, gymnasts, to name a few. If that is who he is, or what he grows into, he will do so without unnecessary cosmetic medical intervention until he is of the age to consent for it.
Obviously I would change my mind if there was a medical concern, if he needed to grow for a life saving surgery or if low growth hormone level started to short circuit his other systems. That is not the case right now though. Right now, every single time a medical professional starts waxing poetic about the horrors of growing up and being a short stature adult I am simply smashed down, burned to my core insulted.
Napoleon, folks, was also in the short club. Seriously, he almost took over the world. When they imprisoned him, he escaped. He was 5'2" by some historical accounts, 5'6" by other later accounting.
Short is not a death sentence. Short is not a medical condition. Short is not a disability. It is not the end of the world that I can't reach the ice cream on the top shelf at the grocery store. It is not a crisis that I have to sit on a pillow to see over the steering wheel to drive. It is not the end of the world to find pants that fit correctly. I can also play basketball better than most people. I have a fantastic long shot. I can swim well, run fast (if I wanted to, I hate running), and I can fight hard.
Short rocks. This little person is about to go to war the next time some tall willowy nurse starts in on what a tragedy it will be if Isaac is just over 5' tall. No, the real tragedy is how afraid of difference the world is that people are willing to risk the health of their already fragile children, afraid that they might be....short. Afraid assholes might not like them, that's what it gets down to.
The end of the story is that as I walked out of the fun house, I passed the mirror that was normal and real. I am be different, I may be a midget, but I am fantastically awesome and beautiful, my arms full of joy and life. My children hugging me, my friends cheering us on, my own smile is real. I go to sleep dreaming up recipes for pork roast and bacon and cheesecake instead of crying over mirror illusions and what asshole strangers think of how I look.
These are my fighting words, my gloves to go in the ring. I will raise my son up to love himself and see his own potential. I will not instill daily, not just an injection of synthetic hormones, but each shot would be a reminder of the rejection that would be his birthright and fear of being different. No. I will not do that to my child.
You betcha this is what that willowy nurse is going to hear next time she tries that line of logic on me.
I am short, not shorter than normal, not short for a girl. I am a dwarf, by medical definition.
When the girls in the locker room called me a troll doll, this is part of the reason why.
I have always been different. Not just different in my personality, because that is certainly true, but physically different than others around me.
Different in a way that it makes people uncomfortable. I once had a boyfriend when I was a teenager break up with me because he said he could not get over the fact that I had the body of a child. Seriously, I am that short. I weighed 85 lbs at the time. He was right about looking like a child.
I used to hate it. I used to look in the mirror and pray to grow. I had family members mock me and say that if I ever hit 5 ft they would buy me a car. Another suggested it was my thyroid and took me for testing, searching for a medical reason for my difference. I would cry myself to sleep at night, praying to grow just enough to be normal. Enough to stop getting shoved in lockers and locked in. Enough that people might think I looked pretty instead of like a freak.
I hated myself. Oh how destructive self loathing could be, still is at times.Then one chilly night, something terrible happened and being short saved my life. Looking like a child was my advantage and my gift.
After that I saw it as a small blessing. I accepted it. I embraced it. Tyrion (the imp) in Game of Thrones tells John Snow, “Never forget what you are, for surely the world will not. Make it your strength. Then it can never be your weakness. Armor yourself in it, and it will never be used to hurt you.”
So I did. I owned it. I armoured myself in it.
Last week I stood in the fun house with my kiddos and looked in the mirrors. I was struck stone cold by the one that distorted my image into a tall, slender woman. A stranger stared back at me. It was as if I was looking into a parallel world that my wish was granted. That woman was not any happier, not any better. Just more normal looking. A woman without difference that might have defined her, might have given her an edge, a compassion for others with physical struggles.
That is not me. I am not a woman without. I am a woman with definition, embracing difference, living, loving, laughing, unafraid. Why would I ever again pray for that to be taken from me?
Being small, being different has given me a perspective on the world that being normal never would have. Being small is not a death sentence, it is not a tragedy.
Why am I writing about this? Why am I labelling it 22q11 deletion, when I do not have the syndrome (my son does)?
When we first started going to specialists for my baby, much of the talk about about his low levels, still normal range, but low, of growth hormone. The suggestion was growth hormone therapy which is a daily shot until he would be out of puberty or reached a desired height. The concern was that his predicted height was in the 5'3" range.
Let me just remind everyone that I am just 4'9". His predicted height is 6 inches taller than me. Predicted.
There are side effects of growth hormone therapy, risk to the heart specifically. Risks to the liver. Risks to the thyroid system. Risk to all sorts of physical systems.
You know what risks being short has? None, unless you count being bullied by assholes as a medical condition and it seems that a lot of the medical community actually sees this as a legitimate concern.
If the problem is really that assholes are that much of a threat that I would have to make my non consenting child endure daily needle injections and risk serious side effects to his health then I propose an anti asshole shot instead. I am serious. The kid who teases and tortures another child over a physical difference is the problem folks, that child is the broken one. Let's collectively turn our attention to fixing that real problem instead of jacking up my kid with synthetic hormone shots and let's also be real for a moment and realize that not being short is not a free pass out of being bullied because that isn't the root of the problem anyway.
It is different for boys though. Like hell it is. Yes, I am angry about this. My father isn't much taller than me (yes, it runs in my family) and he is a Life Flight AirEvac Pilot. My brother, also short in stature is a National Guard veteran who did a tour in Afghanistan. My grandfather on one side was an oil rigger, on the other a carpenter. The men in my family never let being short hold them back, instead they used it to their advantage. Coal miners, oil riggers, shrimp boat captains, farmers, pilots, firemen, poet, lumber jack, soldiers, sailors.....men every single one of them short. Why should I take that heritage from my son? If he is only 3 ft tall then he will still rock this world. There are opportunities available for people who are short that are not open to tall folks. Movie roles, jockeys, divers, gymnasts, to name a few. If that is who he is, or what he grows into, he will do so without unnecessary cosmetic medical intervention until he is of the age to consent for it.
Obviously I would change my mind if there was a medical concern, if he needed to grow for a life saving surgery or if low growth hormone level started to short circuit his other systems. That is not the case right now though. Right now, every single time a medical professional starts waxing poetic about the horrors of growing up and being a short stature adult I am simply smashed down, burned to my core insulted.
Napoleon, folks, was also in the short club. Seriously, he almost took over the world. When they imprisoned him, he escaped. He was 5'2" by some historical accounts, 5'6" by other later accounting.
Short is not a death sentence. Short is not a medical condition. Short is not a disability. It is not the end of the world that I can't reach the ice cream on the top shelf at the grocery store. It is not a crisis that I have to sit on a pillow to see over the steering wheel to drive. It is not the end of the world to find pants that fit correctly. I can also play basketball better than most people. I have a fantastic long shot. I can swim well, run fast (if I wanted to, I hate running), and I can fight hard.
Short rocks. This little person is about to go to war the next time some tall willowy nurse starts in on what a tragedy it will be if Isaac is just over 5' tall. No, the real tragedy is how afraid of difference the world is that people are willing to risk the health of their already fragile children, afraid that they might be....short. Afraid assholes might not like them, that's what it gets down to.
The end of the story is that as I walked out of the fun house, I passed the mirror that was normal and real. I am be different, I may be a midget, but I am fantastically awesome and beautiful, my arms full of joy and life. My children hugging me, my friends cheering us on, my own smile is real. I go to sleep dreaming up recipes for pork roast and bacon and cheesecake instead of crying over mirror illusions and what asshole strangers think of how I look.
These are my fighting words, my gloves to go in the ring. I will raise my son up to love himself and see his own potential. I will not instill daily, not just an injection of synthetic hormones, but each shot would be a reminder of the rejection that would be his birthright and fear of being different. No. I will not do that to my child.
You betcha this is what that willowy nurse is going to hear next time she tries that line of logic on me.
Tuesday 23 July 2013
Clay Class
It isn't finished yet. Next week we will paint and glaze it before it gets fired.
The class is more than art though. Lily and I get to talk, as we create. I am right by her side as she engages in an art she really really loves. Just like when Holly steps foot in a dance studio and lights up, Lily melts away her tough shell when she pries open the steel security door and dances down the hall to the clay studio. She doesn't have to be a big sister or a farm girl or perform for anybody here. In the studio she is Lily the artist. Lily with her own tools. Lily with her spot in the kiln. She cleans up after herself, shows the younger kids how to work machines that they have never used, and sings and smiles and laughs.
Then on the drive home we crank the windows down and the music up, sing as loud as we can while cruising down the rural highway home at dusk. We pull over to take pictures, we tell folklore stories, tonight she sang me a song in Nixie called Pinkora about a magical world with a giant pink moon that births fairies once a week. That's Pinkora with a rolling rrrrr.
This girl is the magic. I hope she always remembers that.
Saturday 20 July 2013
Adventures For Summer
I am too tired and to back logged in my online work to spend too much time typing up some thoughts I have had this week on serious subjects so this post is just to gush about how blessed and wonderful this week has been.
Isaac has continued to walk. At first it was just in the afternoons, after lunch. Now, he's at it all day. It just makes my heart explode with joy to see him come around a corner and toddle across the room into my arms. He also taught himself (from the iTouch program) to sign heart. He signs it when we ask him where his heart is, but also does it when I ask him where his love is.... and then he says, Mama.
We had adventures this week. Full speed. Ballet camp, playing with new friends, lunch with one of my mentors and friends. Art class, playing with new friends. A day at home full of farm chores and phone calls and running running running running. Lunch as dragons and princesses on the square.
Finally, we topped off the week with horse lessons and an amusement park trip. Oh the girls were in love. Isaac was frustrated that there were so many rides he was too small for, but kettle corn seemed to make it up to him. Plus, he borrowed a sweet ride.
My girls had never been to a ride park like this. They have been on carousels at the park, zoo, and mall.....but nothing like this. When we got an invitation, I hesitated. It wasn't something that I like to do and I usually lead the adventures....but life and learning are about new experiences and deciding what you like. The girls can decide for themselves. Oh my. They are huge fans, especially Holly. If the ride was fast and furious, she wanted on. She was too little to ride on some without an adult so she drug me on with her. Eek. Not my cup of tea, but holding her in my arms while she screams a joyous and wild, WhooooooooHooooo!!!! is my cup of tea. Oh that girl. She will fly.
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