I find myself remembering a specific little girl that I had the honor of teaching as a practicum student in college, a little girl who at the age of three taught me lessons that I am still learning in my own life at the age of twenty eight. Josie was one of a kind, a brilliant just turned three year old with a twin brother who had significant disabilities. Josie was paralyzed from the mid chest down due to a spinal cord stroke as a premature infant, which impacted her diaphragm and thus her ability to speak loudly and clearly, but in all other ways of development she was above and beyond expectations. She was so patient with her brother, and she was his protector making sure that he was never overlooked at circle time or during activities in the classroom.
One day during free play in the classroom, otherwise known as barely controlled chaos, I observed that Josie was over at the fine motor/art center and she was methodically wheeling herself back and forth from the shelf to the table. What I saw amazed me. She had apparently been unable to obtain anyone's attention over the din of her peers shouts and laughter and yelling, so she decided to get the materials she needed by herself to draw. The paper had posed no difficulty, but the basket of crayons was too large and awkward for her to place on her lap and wheel over to the table. So instead she was putting one single crayon on her lap, wheeling over to the table, placing it beside her stack of paper, and then wheeling back for another color. I watched in amazement at her determination. She was not frustrated, she was not angry that it was taking her so long to do what another child could have done in a single grasp, she was not bitter. She was focused and proud of her ability to achieve her goal even if it took her more than a dozen trips to retrieve all of the colors she wanted. I had to sit on my hands to prevent myself from jumping in to "rescue" her. When she finally had every color she wanted and had secured herself before the table to begin coloring a smile brighter than any I had ever seen lit up her face as she surveyed what she had accomplished. She had done it - it may have taken a little longer, it may have been done a little differently, but she had done it! As she started to color, I slid into a chair next to her and we had the cutest little conversation.
Me: Josie, that is a beautiful picture! Can I color with you?
Josie: Sure! But you have to get your own crayons!!
Josie, thank you for teaching me how to get my own crayons, and how to be so proud of every success, and how to never give up when it seems like you can never move the mountain (or crayon basket). I was your student far more than you were mine!!

Quite a while ago I won a copy of the documentary DVD Shooting Beauty from To The Max.  I finally was in a good movie watching mood this afternoon and so I nestled into the couch and popped the DVD into my laptop. Yes, I have a regular DVD player that is making a nice dust collector beneath my TV because I have no idea how to connect it to the TV via the digital cable box and if I have learned one lesson it is to not play with expensive electronic devices. Anyway, my laptop serves as a perfectly respectable movie player. I was very excited about the prospects of the film. The plot was fascinating to me. It is about a fashion photographer who begins to take photographs of individuals with disabilities but then realizes that she needs to create a way for them to take photographs of their daily lives from their own perspective. The art they create together is beautiful. Even more beautiful is the demonstration and recognition that each person, regardless of their disabilities, has a voice and a point of view and a life to share. As stories are told, it becomes apparent to the watcher just how much more alike than different even those with the most significant disabilities are to the abled. This documentary is real, it is unbiased, it is honest, it is revealing, and it provides a new perspective and a new point of view. There is just as much beauty in the photographers as in their photographs. To learn more about this project go to Everyone Deserves a Shot.

I remember at one point not all that long ago having this mysterious substance called energy. I think I got a hole in my fuel tank because energy is a very rare commodity. Today my BIG, HUGE accomplishment was getting dressed and going to the store Right Next To my apartment building. It is so close I can see the back of the store from my window. I managed to roll there, with a stop to rest once I got inside the store, and get basics to stock my cupboards and fridge for the next few days. Coming home was easier because the rear driveway of the store is a HUGE slant, and the very best part of the exhausting trip. I perch at the top of what is basically a launching ramp and check carefully for traffic on the side street at the bottom. Thankfully this is small town Michigan, so traffic is rare and I can spot any vehicles easily. Then I eek my chair out over the edge of the driveway and throw my arms up in the air. At the bottom of the downward trajectory is a double bump of curb and pothole that adds some serious air time. I usually come to a stop somewhere in the middle of the road, although I have made it completely across the road before. This feat scares the dust out of the mainly elderly population that happens to witness it. So, anyway, by the time I arrived home I had used all of today's supply of energy and more than likely a good share of tomorrow's. There are many dishes in the sink waiting to be washed, and the floors need to be vacuumed and mopped (hint, that takes many days to accomplish and I may be seeking assistance with that as it eats up about a week of energy), and I am too tired to do anything about it. Not sleepy tired - although I did crash with some weird system errors earlier (I was violently shivering, freezing cold, every muscle hurt, and I was groggy) and took a nap then- but physically exhausted to the point that I can feel the weight of my eyelashes tired.
Here is a good example of tired. My blood sugar crashed this evening, and I was in the kitchen fumbling to mix up a protein powder that I keep for when I don't feel good enough to eat. I was having trouble opening the new milk jug, so I placed the half gallon container between my knees (now would be a good time to point out that my knees rotate inward with spasticity) to hold it and then firmly twisted the lid. Apparently my knees were applying significant force to the jug because I created a milk fountain. After a few choice and creative curse words, I looked at the large puddle on the floor and looked at my pajama pants which were already wet. I then stripped off my pajama pants and tossed them on top of the milk puddle and let them soak up the mess. I was too tired to go get a towel, or to dig under the sink for a roll of paper towels. I was then too tired and shaky to go get new pajamas, so I wore nothing but a t-shirt until the next time I went into my bedroom for medicine and then I snagged a dry pair of pants. The shakiness is gone thanks to the milk protein drink, and my soaked pajama pants are spending the night in the bathtub until laundry day tomorrow when I will pay a little extra to the wonderful woman who does my laundry for having to deal with stale milk smelling pajamas.
My BIG goal for tomorrow? I am running out of dishes, so I think I need to wash at least a few of those so I have some plates and bowls to eat from.

I am sleepy as I write this, so the odds of it making any sense at all are at best 50/50. :) Make your wagers now! This photograph is of the image on my new favorite T shirt from Zazzle. I may rely upon a wheelchair for mobility, but I still have attitude. For a while now I have been feeling like my life is stuck in this sick and twisted version of the movie Groundhog Day where each day is a repetition of the day before and there is no escape. I thrive on having to think, to problem solve, to be creative, to engage and interact, to create new ways that have never been tried before, to celebrate successes that to the outside world seem insignificant but to the world in which my heart dwells are achievements akin to climbing Mt. Everest backwards while blindfolded. For too many months my life has been on hold. I have been in a stagnant holding position, a medical limbo, a place of existing but not living my life to the fullest. That is not me. I need to live my life and live it out loud, to live it to the limits, to live with passion and pursuing the gifts I have been given and the marvel of truly being alive. I can either wait in this holding position to die, be that at age 35 or 75, and just wander through the intermittent time, or I can take control back in my life and live every single moment that I have no matter what life throws at me. I will rebel against this disorder that continually whispers "you can't" "you lost", "that is impossible" and throw in its face all that I can do, all that is not lost, all that is possible. I will chase my dreams, even if those dreams have been changed slightly, and I will not remain stagnant any longer. It will take time to get a plan of action in motion, but I am beginning the process. I am breaking free of the hold that this has had on my life and declaring that I will live my life boldly, unabashedly, in faith and mercy, and refusing to sacrifice a moment. I must create something powerful, something beautiful, something of change and impact from this situation. I must choose to live instead of just being alive. In the future I see myself returning to college to pursue a Master's Degree, regaining my independence so I no longer feel trapped by relying on others for my access to the world, and reclaiming the passions in my life. I, and only I, will define who I am and what I am capable of, and my life will be limited only by my ability to imagine and to believe and to create adaptations as needed.
If this sounds dramatic, I apologize but this past week has been rough emotionally. This was a break through to realize that life will not be like this forever and that I can change so much of my reality. This life is mine to life, or mine to surrender. I am a rebel with a cause again!
P.S. Please let me know if this does not make any sense and I will rewrite it when I am more awake. I am very groggy and sleepy but wanted to write this tonight.

Katerina was about 25 pounds of pure stubborn will. She had never been away from her parents for any period of time prior to entering my preschool class, and she was definitely less than enthusiastic about finding herself in the midst of controlled chaos for 3 hours each day. Once it became evident that this school thing was not going to end in the near future, Katerina decided to communicate her discontent loudly and clearly. Or should I say silently and clearly. Katerina spoke both Polish and English, and had a solid 50+ word vocabulary in each language. On my home visits she chattered like a song bird, switching between languages and putting on a show of singing and dancing. At school she became silent, refusing to make a single sound. She also knew basic sign language, and thus began our stalemate. I would request that she use her voice to make a request or communicate, and she would easily communicate her desires or preferences in sign language. When she thought no adults were listening, she would chat happily with her peers or even read from memory the Brown Bear, Brown Bear book to an audience of dolls. Yet the minute an adult approached she reverted to the silent treatment.  Finally one day about three months into this stalemate I decided to up the ante to get her to talk, a skill I knew very well she possessed. I made the ultimate treat in our preschool classroom - popcorn. Then I offered it to the children, and the following exchange occurred with Katerina. All text in Red is Sign Language.

Me: Katerina, do you want some popcorn?
Me: Katerina, that was good signing but I need you to use your voice and tell me if you want popcorn.
Katerina: No voice. Want Popcorn.
Me: No voice, no popcorn Katerina. You can use your voice.
Me: No voice, no popcorn. Look at all your friends eating popcorn!
Me: You know that you need to use your voice to get popcorn.

*Image from ASL University

About four weeks ago I ordered custom Converse All Star sneakers online and this week they arrived in the mail. You choose every detail of the shoes, from the color and fabric design of each section to the color thread used to stitch the shoes together to a custom message that can be embroidered on the shoes. Since Converse are the only shoes that fit comfortably over my AFOs, especially since I now have 4 straps per AFO to try and hold my foot inside of the brace in an approximation of a normal position, I wanted a pair that were unique. I predict splurging again in the future for a "fall/winter" style. :) Yes, those are pink skulls on the tongue of the shoes and also on the inside fabric. Girlie yet punk. Purple is my favorite color, so I went with a majority of the shoe being a nice shade of purple with pink stitching to match the pink skulls and pink laces. Then I had to choose what I wanted embroidered. I considered many, many things. I finally settled on Believe, as shown below, because throughout this journey I have had to simply believe - believe that an answer would be found, believe that tomorrow would be a better day, believe that God has a plan. I choose to Believe.

These are now my favorite shoes, and I can not wait to start wearing them and showing them off!!

There are bad days, and then there are bad dysautonomia days. Today is a bad dysautonomia day. I have spent the entire day curled up on the couch and unable to maintain an upright sitting position for more than 5 minutes. Toasting waffles for dinner was a race with my blood pressure to see if the waffles would be toasted before my blood pressure hit the floor (and took me with it). Waffles won, but not by much. I have fought to stay hydrated, which is rather difficult when you never feel thirsty and even more difficult when your intestines decide that they need to rebel and stage a mass evacuation drill and even more difficult when your stomach decides to try to work in reverse, causing severe nausea. I have been alternately a good degree or so below normal body temperature, huddling under my favorite blanket, and a good two degrees above normal, my skin feeling on fire and burning to the touch of anything. My heart decided to join in on the fun and created some funky new rhythms as it also alternated between not quite too slow and not quite too fast. Yet with all of that going on, I still laughed today. I still shared jokes, I still celebrated friendship, I still wrote, I still listened to an audiobook, I still watched favorite tv shows, I still planned and schemed and dreamed. I still lived and laughed and loved. Even on a bad day, on a day when I wanted to cry but honestly could not find the energy to do so, I lived each moment as much as I could. That is a priceless lesson I have learned from this Mitochondrial Disease- even the bad days need to be lived to the fullest. And just for the record, I still hate Pollyanna.

This weekend is going to be FULL

Of crafty fun and goodness

Courtesy of Dysautonomia and the working diagnosis of Mitochondrial Disease, I have no functioning sleep wake cycle. Circadian rhythm is a joke. My poor brain is very discombobulated and without chemical assistance is never able to fully awaken and is never able to fully fall asleep. It is like an endless night of the living dead. I take my "lets convince the brain to wake up medicine" as soon as I get up in the morning, but there is about a one hour lag between when I take them and when they convince my brain to wake up. That one hour has led to some great family stories of the hysterical things I have reportedly said and done, and more than a few unexplained bruises. This morning was a great example of my brain NOT on drugs.
I made myself a cup of coffee, which I can do in my sleep thanks to a coffee maker upgrade back last fall. You pour boiling water across your lap once because of a combination of not being awake and poor arm strength and you quickly problem solve. I love Klaus my Keurig coffee maker. So I took my heat resistant, silicone lidded cup of coffee with me into the bathroom where I get dressed (I know, some may say eww but I was not using the toilet or flushing it so hush). I set my coffee down in the bathroom and then went to gather up my clothes. I then tossed my clothes into the bathroom (my wheelchair does not fit - by a freaking inch- so I transfer to a walker) and went to turn the light on. I stared at the two switches. I tried one, but that only made the room darker so that was no good. I put that back where I found it. I tried the other one, but that just made an annoyingly loud noise, so I put that back where I found it. OK, come on I know one of these had to be the light switch! TWO minutes later I realized the lights were already on!! Nice. As I was getting dressed I discovered that when I got dressed yesterday morning after my bath I had not only put my underwear on backwards but inside out - and had not noticed it for 24 hours. Bonus. I managed to get dressed with everything in the correct position, sipping coffee along the way. Teeth brushed, hair pulled back into sloppy ponytail, I finally looked in the mirror. I decided I needed to apply Cetaphil. I took the lid off of the jar and stuck my finger inside only to discover I had just stuck my finger in my coffee. Coffee as a facial was not going to do it for me. I tried that again with the correct lotion which worked so much better. Then I came out into the living room to put on my AFOs and shoes. Putting my AFOs on is a wrestling match (if you want to know why look at the post two entries ago with photos of the spasticity and dystonia in my feet), so at first it did not occur to me that I was having an unusually hard time getting my brace on. Five minutes later it occurred to me that it was the wrong brace. Odd thing is that the curve of the wrong brace was a more comfortable fit to my foot in many ways - it let me keep them curled.
This is why I have a rule with anyone who might come in contact with me during that hour lag period that nothing I say or do can be used against me. I am not to be held accountable to anything you might convince me to agree to doing and anything I say that makes no sense can not be used to humiliate me. The same thing applies to the lag period between when I take my "convince the brain to go to sleep medicine" and actually fall asleep!!

I am not sure if I have ever posted pictures on here of exactly how the dystonia/extreme spasticity in my legs has greatly altered my feet. My toes are contracted up into a curled position from which the can no longer be coaxed straight.

My feet are rotated inward at the ankle so that when I weight bear it is not on the bottoms of my feet but the outside edges and ankles, causing several physical therapists and doctors to comment on the fact that they feel it is only a matter of time before I break an ankle. I choose to remain optimistic and take calcium to strengthen those bones!
My feet are also tightened in such a way that the toes are pulled in tightly and thearch has pulled up and to the inside. Bones have shifted creating a new arrangement on the area of my foot that takes the brunt of my weight when I transfer or take a few steps. Even in my AFOs I tend to go into a tight "toe point" with my heel pulled up and my toes tucked downward which causes pressure sores to form if I am not very careful.

This month I am supposed to meet with another neurologist to undergo evaluation for botox and obtain insurance approval to try and release the spasticity and tension in my lower legs. I also rotate inward so that when I stand my feet point in opposite directions at each other and even when sitting my knees rotate inward towards each other all the way from my hips. Some of this is corrected by the positioning of my wheelchair.
I apologize for the poor quality of these pictures, but they get the job done. And these were taken while on a cocktail of medications to treat the spasticity. I am a bit like an awkward ballerina always stuck in the wrong position. :)

Yesterday for Easter my brother and his crew (my sister in law, my nephew who is thirteen and thus too cool for everything, my niece who is 11 going on 16, and my niece Little Bit who is blissfully 5 years old) picked me up and we headed up to where my mom lives to all go out to lunch.I took my camera with me but somehow managed to miss pictures of my mom, my brother, and my nephew. I will get them soon!!! We went to Chilis where out group managed to consume what must have been the equivalent of an entire pig's worth of ribs and created the carnivore sundae pictured below.
I was highly impressed by the ability of my unfairly skinny niece and nephew to consume food - my nephew cleared a steak meal and my niece cleared an entire whole rack of ribs. And both got dessert!! Little bit was not far behind them clearing her plate of kids mac and cheese, half her fries, and an ungodly amount of ice cream and some cake from a dessert that could have easily fed four. Afterwords I think we all felt a little full.
Little Bit was just thrilled to show off her Easter dress and insisted that her arms were not cold, nor her bare legs and feet. I was the same way as a kid, so I really can not tease her too much. She is getting so big - not the tiny little baby I took care of for two years!!

I loved this picture so I had to play around with it. I transferred it to black and white with just her Easter dress and Princess Barbie sunglasses left in color. The Princess Barbie sunglasses were a critical part of the outfit as she is SO into princesses and Barbie dolls now. Dora the explorer is losing her glory and Barbie is becoming the best thing on earth. She is growing up!!
On the way home Little Bit was writing and drawing on a note pad and drew the most precious picture for me. I really wish my scanner was not having a temper tantrum right now because I would love to post the picture here. I will try to coax the scanner into working again later, but I think that feature may just be DOA - the printer has been moved from Michigan to Virginia to another house in Virginia and back to Michigan so I don't think it owes me anything. She drew a picture of herself telling me "I love you" and me telling her "I love you too Mallory". Cute, right? But the best part is that she drew me in my wheelchair without any hesitation or fuss, just accepting that it is a part of my life. God I love that kid and I love her view of the world and the way she takes things in, asks questions, and when she is satisfied accepts differences and is good with them. If only adults could learn from kids!!

On Thursday night I completed an at home study to determine whether I am able to maintain my oxygen levels while asleep and whether my heart rate drops during sleep. It was a simple test, all it involved was wearing a pulse oximeter on a finger and sleeping with it. The challenge was in the poor planning of the designer of the system. Actually, the first challenge is the fact that in my sleep I can escape from anything and everything regardless of its medical necessity and have no memory of doing so. While in the hospital I often came close to removing my IV in my sleep because it was bothering me. Bandages have been removed, socks are always removed. So I figured the little finger clip had no chance of lasting through the night. Considering my tools at hand, I broke out the medical tape and fastened that clip to my finger in such a way that I would wake up before victoriously removing it from my finger. Houdini would have been proud of me. So back to the challenge posed by the designer. The finger clip plugged into a monitor and recoding box about the size of an old cassette walkman, and there was exactly 12 inches of cord between the clip and the monitor. Just enough cord to tangle and to hang myself. There was no way to set the monitor beside the bed, it had to climb on in and sleep with me. Not an issue until you consider that someone thought it would be helpful to have color coded LED lights visible from the moon on the recorded that flashed approximately every second. I tried stuffing it in a sock to smother the light and it made no difference. Finally I smothered it with an extra pillow and fell asleep. I woke up at one point during the night to the shock of my left arm being violently jerked straight out from my body as the recorded plummeted from the bed and, since the clip was fastened to my finger securely, took my arm with it. Trust me, that wakes you up quickly. It looked like I was fishing for alien testing equipment over the side of my bed. I reeled it back in, apologized for having committed the crime of moving in my sleep, and promptly fell back asleep. So I should have any results from the test next week some time. One funny moment was just after getting it hooked up and laying down I got the hiccups. In order to stop the hiccups I took a deep breath and held it. I then watched as the oximeter slowly began to register down to 93...90...88..86. Oops, but it got rid of the hiccups!! I included a little note explaining that one on the printout.