Most mothers give their infants life once, which is a beautiful miracle, but my mother spent a year in her life breathing life back into me and giving me life again and again. I was born an apparently healthy infant, bald as bald could possibly be and full of attitude, and giving no signs of the genetic disease that was already written in every cell of my body. When I was five months old my mother was rocking me to sleep while watching a movie on TV. She did not want to miss the end of the movie, so she laid me on a blanket on the ground rather than taking me upstairs to my nursery. When the movie finished she discovered I was grayish blue, not breathing, and had no detectable heart beat. The monster in my genes had decided to rear its head in the form of relentless apnea. My mother learned infant cpr, I was hooked to a monitor, and no one ever slept through the night. Our address became well known to every fire fighter in our small town and they did not bother to knock on the door if a call came in, they came through the door one way or another. Yet the apnea was vicious. After one particularly prolonged episode at 6 months of age, my parents were taken to the little room no parents ever want to go to and informed that I was profoundly and terminally brain damaged with a life expectancy of less than six months. The recommended course of treatment was to leave me hospitalized or placed in an institution until I died naturally of another episode. My mother refused to give up on me. She informed the doctors that I was a child, not a used car that you return and replace because it is broken. I went home with her that day. The apnea continued up until my first birthday, but my parents persevered and delighted as I met every milestone. When I started to read at two and a half, my mother realized that she was in for a totally different ride than any of the doctors had tried to prepare her for.
My mom has been my biggest supporter. She believes in me even when I am unsure. Without her support I never would have had the courage to apply to Vanderbilt, let alone done well enough on the scholarship weekend to win a full Deans honors scholarship. Without her support I never would have had the courage to apply to Virginia to teach and I would have missed some of the most amazing children that touched my life, and an incredible friendship with a friend unlike any other. Without her support I would have never had the strength to go through the torturous ordeal of relearning to eat in early 2009 when I had lost the ability to swallow, and I would be dependent on some sort of artificial nutrition. Without her I would not be me. I would not have my very keen sense of justice, my heart for others, my willingness to risk getting hurt to love those who need it, my passionate way of living life, my foundation of faith, my wicked sense of humor, and so much more.
So not only has my mother given me life more times that we can count, but she has shaped that life and given me the strength and support to be the person I have become. I an blessed to be her daughter, honored to be her friend.

As I previously discussed in an earlier journal post, I lost my health insurance on March 31 when my standard 18 months of COBRA coverage ran out. I faced a huge conundrum because the school district (Dante's Inferno level 14) gave me 10 days official warning and no information regarding programs available post COBRA. Strike one - a personal insurance policy would cost me a fortune and provide enough coverage to last about two weeks. Strike two - I am in appeal with Social Security so Medicare is out. Strike Three - Medicaid required a three month process of submitting documentation and waiting for some grand governmental diety to determine if I am indeed disabled before I could receive any services let alone the cost due to me making too much money. But God never accepts a strike out. There is a little clause that the school district (may they enjoy their spot in the Inferno) never notified me of which states that if you are disabled when you start COBRA or become disabled while on COBRA you can apply for an extension of coverage at the end of the 18 months. I found this little tidbit out doing research online. Strike one - they require a letter from social security and I am in appeals. Strike Two - the school district hates me with a passion and would hate to have to give me more benefits. However, I was able to establish that given that social security is in appeal, a letter from them is impossible to obtain, and so we went with documentation from my medical team. My neurologist is my hero because he wrote the most kick butt letter listing out every diagnosis I have and explaining that I am 100% medically disabled and severely disabled. Less than a week after them receiving this letter I received a letter in the mail. I HAVE MEDICAL INSURANCE AGAIN!!!!! It is for 11 months, so it ends February 28, 2012 but that gives us so much more time to work on things!!! ANd the miracle continues - I never had to pay a large sum of money for a prescription, I never had to stop taking a medication because I could not afford it, and I never had to go without necessary medical care!!! God ROCKS!!! I was terrified as I watched my medication supply deplete and knowing I could not afford to purchase the next refill. I was wondering if I would survive long enough for Medicaid to decide I was disabled or if the lack of medication would prove the point before then. To be blunt I was scared of dying and I feel like I have been given back my chance at living again. I know it sounds dramatic, but my health care and medications literally keep me alive. Thank you to everyone who prayed, who offered good thoughts, and who cared. I burst into tears when I read the letter because it was such a weight lifted and fears dissipated. Such a lesson in the fact that God provides exactly when it is needed and I should have trusted all along instead of wasting my time on fear.

I made a perfect batch of pancakes for dinner, and was singing and "dancing" to celebrate this accomplishment. You have to understand that I have issues with pancakes, or rather pancakes have issues with me. I first learned to cook pancakes way, way back when I was in high school at the house of one of my best friends. Cooking was done for survival in my house growing up, not for enjoyment. So my friend and her family were shocked that my cooking list at age 16 was limited to spaghetti, scrambled eggs, grilled cheese, ramen, and anything microwaved. Thus they added pancakes to the list. The last time I made pancakes was back in high school. I have my family attitude that overall cooking is a lot of work and is done for survival, although recently I have learned how to cook many new things and been successful. So after I moved into my apartment I decided I would have an "easy" homecooked dinner and make buckwheat pancakes for dinner. Once the smoke cleared and the smoke alarms stopped sounding about 30 minutes later, all of my neighbors knew that I had managed to singe a batch of pancakes. For weeks I had little old ladies coming up to me and asking me how my pancakes turned out. Cute granny, real cute. So then I won an electric griddle at a Christmas party I attended with my Stepmom and thought that maybe the issue with the pancakes was the frying pan from before I was born that I had used. Another batch of buckwheat pancakes was mixed up and although I dodged setting off the smoke detectors this time, my success was still null. I mumbled inappropriate words under my breath as I threw the package of unused mix away and swore off pancakes. Until today. I had purchased Bisquik pancake mix, the simple and no frills not so good for you but hell of a lot easier to use stuff I grew up on, and I decided it was time for the third and final go round with pancakes. I also should mention that cooking just about anything is a huge endeavor as it is because my kitchen is a standard small galley kitchen and nothing is modified for a wheelchair. I can stand for short periods of time, but too long and my legs turn funny colors and I lose the ability to keep them under me. Cooking is an extreme sport. So using the Bisquik and the electric griddle I made a complete batch of perfect pancakes - not one was burned, not one was too doughy!! I have leftovers in the fridge to microwave tomorrow and leftovers frozen for another time. I was a pancake making marvel. I proved that I could do it, and I had a delicious dinner at the same time. And in the end, you know it was about so much more than the pancakes.

 I'm Alive Kenny Chesney with Dave Matthews


So damn easy to say that life's so hard
Everybody's got their share of battle scars
As for me I'd like to thank my lucky stars that
I'm alive and well

It'd be easy to add up all the pain
And all the dreams you've sat and watch go up in flames
Dwell on the wreckage as it smolders in the rain
But not me... I'm alive

And today you know that's good enough for me
Breathing in and out's a blessing can't you see
Today's the first day of the rest of my life
And I'm alive and well
I'm alive and well

Stars are dancin' on the water here tonight
It's good for the soul when there's not a soul in sight
This motor's caught its wind and brought me back to life
Now I'm alive and well

And today you know that's good enough for me
Breathing in and out's a blessing can't you see
Today's the first day of the rest of my life
Now I'm alive and well
Yeah I'm alive and well

I have adjusted to using a wheelchair, but there are few moments when it does not register to me as something foreign or imposed upon me. While I appreciate greatly the mobility it offers me, I still have so many fresh and often stinging memories of my independent mobility and my love for being in motion on my own. It does not yet feel like a natural part of me, but rather still like a somewhat awkward contraption of metal and vinyl. Today was different. For a few moments I completely forgot that this was not natural, that this was not how my body has always moved, and I felt free and joyful in motion. We had a family lunch today at a nearby restaurant, but we arrived about 10 minutes too early, as our reservations were for just when the restaurant opened. So I was hanging out in my chair in the parking lot with my family, and as I started wheeling towards the more sheltered area of the building to escape the wind (I had decided to wear a skirt - bad planning), I noticed my wheelchair was acting weird. It was almost skipping when I pushed it. Finally I realized my Dad was walking behind me and stepping on my wheel every time I pushed. Without a thought I spun around and began to chase him around the parking lot. I was racing, I was turning, I was weaving in and out of obstacles and laughing hysterically. He tried to escape by darting between my stepmom's truck and a post, thinking I would not make it through, but I navigated without any problems and almost caught up. Then the wind kicked up when I was facing the wrong direction and my skirt flew up into my face. Good news: I had on thick purple tights so nothing was revealed. Bad news:I had on thick purple tights and my skirt flew up in my face. I could not stop laughing and neither could he. Finally I surrendered and spun on my wheels, tossing my tangled mess of windblown curls with as much attitude as I could muster with my laughter and promising revenge. I swear running over his foot when we went into the restaurant WAS an accident, just a happy coincidental accident. But as I chased him and we laughed in the fall wind, I forgot that the wheelchair was foreign to me, I forgot to hate the fact that I "should" be running, I forgot to long for the free movement I used to know and reveled in the freedom and movement that I captured in my chair. I forgot that I am different, that I am dealing with more medical issues that JAMA, that in just one short year my life has radically changed and I lost myself in the sheer joy of the moment. What used to be did not matter and what may happen was not a worry, and for a moment I forgot it all.