my first time... blogging

Hello, I am Amber. That is the name that goes with my face. I smile all the time, usually too quickly, at everything, even when I'm completely miserable and I'm miserable far too often.

I am one of those whose brain feels overloaded at every moment in time, but I'm always seeking more information. One of those people that is rarely truly bored and always can find something I'm supposed to be doing or wish I could be doing.

I really love strange facts or details about things, and people with hidden talents. I desperately enjoy knowing things most others don't know. I love secrets. I am a true empath, since the day I was born, I sense and feel details that most hardly notice, if at all. I have a tendency to be very wrapped up in thoughts and feelings and appear aloof, though I've always been quite a busy and hardly ever in one place for long.

I prefer the company of most animals, it seams we get each other.

Usually, I'm absorbing more details than most can even fathom. I'm a deep thinker and not so great in conversation at times.

Moose, golden-doodle, born 5/2018

I've was never a great fan of books due to my significant struggle with reading growing up, until late in my senior year in high school when a teacher realized I'm dyslexic. I spent a little time lost in a few books back when I first started experiencing health problems that kept me from my normal active lifestyle. I loved reading the Twilight books and the 50 shades of Grey series. Now as a parent, I have a hard time finding time or a quiet place to read for myself. On the rare occasion I'm able to dive into a book I have a very hard time putting it down to deal with reality. The last six years of my life I've been teaching two of my little people how to read, so our house is filled with children's books of all sorts, and papers, and note cards full of sight words. With an exception to all the medical journals and books written by Doctors and researchers to better understand some of the heath conditions my family deals with that many local Dr's have no idea how to treat.

For starters, I am a hyper-elastic genetic mutant with 3 mutant spawn of my own. (That's me trying to make light of a really crappy situation because  hey, what else can I do?) My 3 daughters and I have Ehlers Danlos Syndrome, a genetic connective tissue disorder that affects our entire body and any/all organ functions (or dysfunctions in our case). Basically, we are very fragile since 80% our our body is made from faulty collagen, kind of like we were made with a crusty old glue stick where everyone else's collagen is more like Gorilla Glue. 

 I'm also adopted, so I had no idea I had a genetic condition until age 32, 8 months after my youngest daughter was born, even though I had been suffering from it my entire life. Parents with EDS have a 50/50 chance of passing it along to their kids, well, I guess we won the jackpot. 

My second daughter, Lili-James, has a chromosome deletion called 4p16-, which has been quite an adventure in her nearly 10 years of life. She also has Epilepsy, Autism, Sensory Processing Disorder, intellectual and developmental delay, among other things. Having EDS and 4p16- creates an avalanche of other health issues across the board for each of us but together we get by. 

Jordan  (16) & Gabbi, Dane/Lab (10)

Karsyn (7) & Lili-James (9)

Thanks to the assortment of health issues we have been through in the last 11+ years, I have been faced with the challenge to completely redirect my life plans and goals. My Cosmetology licence was no longer an option to carry me or my daughters through life, nor was it any kind of true passion. I never imagined I'd be classified as disabled at age 27, spending my days and nights from then to eternity tending to various special needs. It completely changed my life, my perspective, my heart and has humbled me. I live in chronic pain, every single minute, which has totally changed the way I think, feel and perceive.  

Recently I was faced with the question from my 2 youngest daughters "why are you just a mom?"... just a mom?! That one got me, it got me real good. I knew in my heart that I had been feeling like "just a mom" for many years, like my hopes and dreams were a wash, that I would just spend my days trying to take care of them and raise them to the best of my ability while hoping I don't die before they can care for themselves or each other. 

I'm at a place in my life where I desperately need a job so I can get on my own two feet, and make a new plan for my future, for our future, but I haven't found a job that will accommodate to all of my limitations, or lack of skills. It was time to change my direction, I needed to gain some more skills. Skills that weren't outdated or beyond my physical capacity. I'm just not ready to accept the life of a person scraping by on disability, so that lit my fire to get back to school. I have stacks of things working against me being here at college, but I have this little flicker of hope somewhere deep that tells me there is a purpose for my existence beyond raising 3 daughters. I don't want them to accept our government's disabled lifestyle and succumb to the thoughts that they too have no purpose. I may be disabled but I'm far from useless. 

My hobbies, passions and dreams have all been pushed off to the back burners for quite a few years, poor health will sweep that rug right out from under your feet just as soon as you think you've got control of things. Occasionally, I find time to dabble in some of the things I once loved, such as drawing/doodling but none of them feel the same as they once did. Here are a few of my doodles from a few years ago. 

I've recently started making decorative wood signs, which then led me to embark on to a t-shirt making venture as I save for my dream of building a tiny home and owning property to raise therapy animals. 

I find some kind of peace and strength, and an unimaginable pleasure in making "inappropriate" signs and shirts. After a life time of being raised my my Pentecostal Preaching parents I can finally let my hair down and quit pretending to be a flawless, perfect individual that I clearly am not and just be human.. be myself without care for acceptance or approval, or fear of disrespecting my parent's image. 

I find peace and solace in the woods or sitting by the Columbia River, soaking up the sun and the fresh Pacific Northwest air. I try to peel myself away from my house and family once or twice a week, usually once everyone is in bed, to enjoy nature and have a few moments to myself, where I'm not obligated to do anything. I love taking in the stars, the wind, the clouds; just living in the right now, practicing my Mindfulness, just as I've been taught over and over by pain management. I'd take a quiet, sunny, gorgeous walk, alone in the woods over nearly anything, better than any therapy I've ever paid for.

Abernathy Creek

I love to drive alone. I'd drive anywhere, for as long as I could if my body would let me, and rock out to my music, generally some Slightly Stoopid or Breaking Benjamin via Pandora. I see music as a very powerful therapy, to just throw on some headphones and shut off the world while I do laundry or other "mom" things makes a night and day difference.

I've never been one to sit still for movies or TV very well. I'm not a die hard Netflixer or have a collection or box set of anything. I just generally have a hard time sitting and doing nothing without falling asleep from total exhaustion. The only show that I can say has truly grabbed me and drawn me in, despite good ol ADHD, is Vikings. I know little to nothing about actual Vikings but watching the series had me on the web doing all sorts of research, I was deeply fascinated as it opened up this whole other world to me. 

I have absolutely no idea where I may go on my adventures through LCC as I make my way through these basic classes and learn how to be a student again after so many years. My interests are so scattered that I don't know how to make sense of any of them or have any true idea of what degree or certificate I am working towards. With health constantly fluctuating and children that need their mother a little more than the average family, I am currently working towards a better me and some type of skill that qualifies me as more than "just a mom" so can financially provide for myself and my kiddos. Someday, I will have my own successful business, own a home, and hopefully find time write the books I've been dreaming about for many years. 

These silver rings I wear are medical equipment, not a fashion statement. You will often see me in a ridiculous amount of different kinds of braces and splints to help me get through various events in life. You may even see me with my red walking stick or my blue cane, possibly even using my rolling walker or my zebra wheelchair, but right now my rolling computer bag has been serving multiple duties to help stabilize me, and keep my on my feet when my racing heart makes me feel woozie, and to carry all these things that are too heavy for me to lift.

I am supposed to wear a neck brace 6-8 hours per day to alleviate the symptoms I have from cranio-cervical instability; wrist braces, knee braces; my shoulders, back and rib cage often held together with KT tape. Life is exhausting when you are constantly trying to hold the 360 joints in your body together and the muscles around them are tight, sore and full of knots from overcompensating. This also takes a huge toll on your energy and ability to focus. It is also extremely exhausting, and very distracting, to constantly be explaining to random inquirers, jokers or disbelievers as to why I have and use all these things. 

It's not everyday that you want to go around explaining that you're walking funny because your pelvis won't stay together with every step you take and you're afraid you're going to fall and dislocate something else, or that maybe your hip will decide to dislocate all on its own from the weight of your leg swinging forward too quickly or stepping in an uneven spot on the ground (Yes, this happens all of the time!)

This is my third quarter at LCC and I am questioning why I started this journey more and more every single day. I didn't realize how physically demanding it would be, how emotionally exhausted the pain would make me, or how it would interfere with my ability to meet requirements at school and in my personal life, or feel satisfied with the work I turn in.

 I'm hoping to have an eye opening experience this Fall quarter because the way things have been going I'm feeling like being a Wal-Mart door greeter for the rest of my life isn't all that bad.