Thats when it all fell apart.

In the fall of 2006 I started my freshman year at Mesa State College (which is now Colorado Mesa University). It was the beginning of a new era for me, starting a new part of my life. I had recently faced blindness  and brain surgery and had made it through all of that, I was ready to start something new and exciting. I was planning to moving on and leaving the last few years buried in the past where they belonged. 

My first year of college was a good year. My roommate and I got a long pretty well and I was adjusting to dorm life really quickly. I think that everyone should have to live in a dorm at least for one year. Some  how the experience of having a stranger as a roommate, sharing a bathroom with 20 other guys and living with so many people is really impacting on ones life (both positively and negatively, but hey, you learn a lot about other people and even more about yourself). The only draw back to this year seemed to be my sleep. I was still easily sleeping 12-14 hours if I didn't set my alarms and scare myself awake (I have no doubt that my roommate wanted to kill me on more than one occasion). I really didn't think my sleep was that abnormal but it was the inability to wake up that bothered me. I know a lot of people struggle with getting up to their alarms, but this was more like, not even hearing my alarm or even registering it going off. It was like, once I laid down to sleep, I was completely out until my neck began to hurt so bad I would wake up. This would happen no matter how many alarms I had or tricks to wake up I tried. 

My classes were going well, though I was struggling in my basic drawing class but my instructor was very patient and helpful. She is an awesome teacher and an amazing woman. I have thought many times these past few years that I would have not made it as an art major without her help that first year. I was taking swimming and working out several times a week that year, all the while my neck would be screaming to stop. I thought that I just needed to suck it up and work through the pain and my neck would get over it eventually. What happened however, was I pushed too hard while working out and my neck gave out while I was lifting. The pain was so immense I ran to the locker room and puked. I was in a huge amount of pain and had a massive headache and was in bed for the next four days. I went the rest of the last semester without working out, I really didn't feel like ever experienceing that ever again. 

The Summer came and I came home to Meeker to work over the summer. During this time, my sleep was still bugging me but now I was beginning migraines again. I call them migraines because they were more random and sudden than my headaches I had before my surgery. These would knock me on my butt while the pre-surgery headache was with me every waking moment since I started vision therapy, growing more intense as time passed. But I worked through the summer and was ready to head back to school, towards my friends and my freedom. My sophomore year was a good year, it started out much like my freshman year only I was in a better dorm and had two friends as pod-mates. Like the previous year, I started working out again, only I was taking it more slowly and more carefully than the last time. I head learned my lesson and I had no intentions of repeating it. Right before the end of the last semester, I hurt my neck yet again lifting and was sick and in bed for a few days. But at that time I was more concerned with preparing for my entrance exam and portfolio review into the Design Program at the end of the year. 

An art majors life, not unlike many other majors in college, is achieved in the studios. This means that a lot of the time one must pull all-nighters in order to get their work done. I really love that kind of life style because I was already pulling all-nighters anyway, usually so I wouldn't miss important classes or if I needed to be up in the morning for something important. I had just learned I couldn't trust myself when I sleep. This is when I became addicted to energy drinks, mainly Monsters (I haven't drank a Monster or any other energy drink for over 2 years now and I proud of that. I can not however be around anyone who is drinking one, the smell makes me want one so badly. I might even man whimper when I pass them in the grocery store, but that has yet to be proven as fact). Another exciting factor in my life at this time was that I had started to read for pleasure. Reading was such a joy now because it had always been such a horrible task in my world. 

(Shameless plug time: this is when I discovered my most favorite book… Lamb, the Gospel According to Biff, Christ's Childhood Pal by Christopher Moore. Buy it, read it, and love it!). But enough with that.

Then came my junior year, just before the school year started I received my letter accepting me into the design program and I was excited to be in an actual degree program. It was during this year that my migraines began to increase. I had a system though, I would ignore it for as long as I could, get my work done and head home. I would then guzzle two bottles of water, chug a Monster, take 5 anvil and sleep for 12 hours (not the healthiest thing I will admit but it worked, at least for a while). That usually seemed to kick' em but I was starting to grow concerned about how addicted to monsters I was becoming. I was sucking down at least one (if not more) a day and that just wasn't healthy. So I began the journey of quitting, the only major consequence I noticed was my sleep problem seemed surged forward. But I had learned a trick or two and just figured a sleep problem was my payment for being able to see and read; I was planning on just dealing with that problem for the rest of my life. It was also in this year, I decided that I also wanted my animation degree, which would tack on one more year, making me a five year student.

The rest of my junior year and senior year progressed along, I still had sleeping problems and migraines all the time but I was focused on getting my degrees. Mom had mentioned that we needed to figure something out for the migraines. So I came back to Meeker for a weekend and went to my PCP. She explained that my symptoms didn't sound like migraines but more like Cluster Headaches (again I am calling on wikipedia):

Cluster headaches are excruciating unilateral headaches of extreme intensity. The duration of the common attack ranges from as short as 15 minutes to three hours or more. The onset of an attack is rapid, and most often without the preliminary signs that are characteristic of a migraine. However, some sufferers report preliminary sensations of pain in the general area of attack, often referred to as "shadows", that may warn them an attack is lurking or imminent. Though the headaches are almost exclusively unilateral, there are some documented as cases of "side-shifting" between cluster periods, or, even rarer, simultaneously (within the same cluster period) bilateral headache….

The pain may be very sharp and may cause pain around the eye area and may also be a pain within the back of the eye. The pain of cluster headaches is markedly greater than in other headache conditions, including severe migraines; experts have suggested that it may be the most painful condition known to medical science. Female patients have reported it as being more severe than childbirth…. The pain is lancinating or boring/drilling in quality, and is located behind the eye (periorbital) or in the temple, sometimes radiating to the neck or shoulder. Analogies frequently used to describe the pain are a red-hot poker inserted into the eye, or a spike penetrating from the top of the head, behind one eye, radiating down to the neck, or sometimes having a leg amputated without any anaesthetic. The condition was originally named Horton's Cephalalgia after Dr. B.T Horton, who postulated the first theory as to their pathogenesis. His original paper describes the severity of the headaches as being able to take normal men and force them to attempt or complete suicide…. 

(thank you wikipedia, you're such a joy).

I was so excited, that was exactly how it felt. I couldn't have put it better if I had tried. So my PCP prescribes a newer drug for migraines called Frova. Frova is an abortive medication that if taken when with the symptoms or signs of an attack begin or even taken during an attack, the medicine can abort the migraine/ headache from happening. She gave me some samples, and they worked really well. I was even more excited, if I could control my headaches the world would be mine for the taking. So I happily and calmly walked (or possibly ran, though there are no witnesses to this theory) to the Walmart pharmacy when I got back to GJ. Once I picked up my prescription, the amount came to $270.00 and I thought, awesome that means there are a fair amount in the bottle. I got to my car and my jaw dropped when I pulled out 9 precious little pills. I began to worry, there is no way I could afford these pills when I was having rounds of 2-3 attacks every other week. I mean to relieve the pain, $30 a pop was worth it but I didn't have the money. When I told mom she was upset and we didn't know what to do. Though I can't remember if we found out from my PCP or someone else but we found out about the NeedyMeds program: 

The mission of NeedyMeds is to make information about assistance programs available to low-income patients and their advocates at no cost. The NeedyMeds website is the face of the organization. Databases such as Patient Assistance Programs, Disease-Based Assistance, Free and Low- Clinics, government programs and other types of assistance programs are the crux of the free information offered online.

What happened was we found out that as a college student I could write to the pharmaceutical company, explain my situation, give proof of my financial situation and proof of being a student and I could request help from the company itself. Low and behold (is that the right low? Better yet, is there another spelling of low? Sigh, curse you phonics!) the company wrote me back informing me there were going to grant me free prescriptions for a year! Are you kidding me, what a blessing from God! I'm here to tell you Frova and strength from the Lord were the only things that allowed me to finish school. 

Around this time, my first senior year was over and my design degree was finished, I only had one more year and my animation degree would be done as well. In February of 2009 I became addicted to swimming. The first day I couldn't swim 25 meters without my neck screaming, causing me to stop (just for a visual, 100 meters is down and back twice on the short length of the pool). But I was getting stronger everyday I swam and my neck was starting to feel better. By October of 2010 I swam my first mile (roughly 1,609.344 meters). In January right before my last semester of college I was going on a sketchbook class to Rome, Florence, and Paris for eleven days. It was an amazing trip and we walked all over those cities, sketching, eating, going to museums and being all around art nerds! Mom and I joke about that being an amazing start to what we felt was going to be an amazing year. But we didn't really think about what connotation "amazing" would fall under. I was ready to come back to the U.S. and rock my last semester! Thats when it all fell apart.

Wow, who is a little slacker when it comes to blogging these last two months? Me, I am, this kid right here. I have a ton of excuses and none of them are good, so I will just skip over all of that and say the most heartfelt apology I can make, prepare yourself!……..… My bad everyone. :)

Tball

Baby Food, Simon, a Massage and I'm going to School!

A few days had passed and I was still in the hospital on the head trauma ward. During this time, one of the greatest challenges was trying to eat and keep the food down. I usually was only able to keep my meals down for about an hour or so. Each time I threw up, a new wave pain would surge through my head. That, plus the fact that moving my head was next to impossible, throwing up was becoming a real annoyance. So most of the time I opted out of eating (much to the nurses disapproval). I knew that I needed to eat to regain my strength but it just didn't seem worth the pain of puking an hour later. I am almost 100% sure that I was not a pleasant person to be around, but my mom continued to stay by my side. Some family friends were awesome enough to rent a room in a hotel for my mom to stay in the whole time I was in the hospital. Mom was there pretty much the whole time (and I know I wasn't the definition of kind and happiness at the time). 

Two weeks later and I was going to be discharged (oh sweet freedom!). The only thing I had left to do was sign some paperwork, take my last batch of pain meds and get to the car. Paperwork was done, meds were on their way and I as an excited kid. Unfortunately, I was still having trouble swallowing, to make matters worse, they were out of ice cream or pudding. All they had left was peas and beans baby food (really? You think that after two weeks of puking up each meal I am going to able to stomach that?). Guess what… I didn't. Thirty minutes later a puked it all back up. And according to hospital policy, since I puked so close to discharge, I was required to stay another night for observation. I was not a happy and I didn't hold back my opinions about the situation. The next morning, I decided that I would take the pills whole instead of having them crushed. It was time to head home and see my best buddy (we gotten a Brittany Spaniel, Border Collie puppy in December and named him Simon. Awesome little dog!). 

I was so happy to be home but walking and moving for that matter still really hurt. I was told that I would need to sleep in a recliner for the next two months and that I could not lay down flat at all until June. That was actually more of a challenge than I thought it would be. The recliner and I got to know each other quite well over the next few weeks. Some days it was all I could do to get up and take a shower, other days I would feel quite adventurous and shlep all the way to the kitchen for a drink (daring, I know!). Like I said, walking wasn't exactly easy or pain free but the doctors told me I needed to get a decent amount of "mild walking" (none of that crazy walking) throughout the day. Truth be told I would not have accomplished this task if it weren't for Simon. That cute little puppy was always there for me; and by that I mean running to the door wanting out, running to me to let me know he wanted out and then back to the door. So, I would grumble and hobble to the door. 3.2 minuets later and I could hear him whining at the door wanting in. So, again I would grumble and hobble to the door. Few minutes later he'd want back out. This pattern would go on several weeks and there were times I wanted to drop kick that puppy for his back and forth obsession, but in the long run I am really thankful.  Little did I realize that I was walking more and more each day.  

In April, I found out that the town of Meeker was holding a fundraiser for me. I was only able to stay for about ten minutes, but as I stood on the stage looking out at the town, I realized how truly lucky I was to live in such a town. The town of Meeker (collection cans included) had raised around $10,000 for my surgery. According to CHP+, our copay was ¼ of the cost. Which meant that the actual sugary was completely paid for. All my family was responsible for was hospital care. That was an amazing day and to say that I didn't get choked up on that stage would be a flat out lie. 

It had been a month since my surgery and the cranial pressure was gone and most of my sight was back. I was slowly recovering and the pain was still there. Not the same pain as before, pain from the back of my head. The swelling was going down and I had a lot of visitors wanting to see the damage. After about a month in the recliner, I was begging my mom to let me lay down. I told her we didn't have to tell Dr B (it would be our little secret). Its amazing, when you are denied something as simple as "laying down" that seems to be all your brain thinks about. Eventually my body actually began to ache for the need just to lay down but as mom reminded me, that would probably not be a good idea. My symptoms seemed to continue to slowly leave, though light still messed with my eyes, it was nothing compared to what it use to be. I was sleeping all the time and my neck was still in pain but all seemed well. By the time graduation had come, I was feeling stronger that I had in April but I was still a long way from being back to 100%. I had survived surgery and I was graduating from high school. 2005 was looking like it was going to be a great year. 

I was told that I should probably take a year off from school and working in order to allow my neck for heal fully. Needless to say, I watched a lot of movies that year, began physical therapy and seemed to be bouncing back. Also during that time I started physical therapy. At the time, I was considering physical therapy to be some sort of torture but secretly I was thrilled to be out of the house. I had watched my friends and classmates go on with their lives and on to school, I was feeling a bit left out. Physical therapy was a nice reprieve from everything at home. As part of my physical therapy, once I week my therapist would give me a deep tissue massage. If you have never had this type of massage, let me tell you that it is quite painful. They're not kidding about working the deep tissue and they have to work the muscles extremely hard to get there (first one I had, I was sitting there thinking "sweet, a neck massage, how awesome!" And then the therapist started. "Thats nice and it feels…. ow, ow OW! What are you doing? Stop it, that hurts! What did I ever do to you?" Then she says for me to just bear with her and she knows its painful. But after a while I thought to myself, "She has got to stop within the next 3 seconds or I might have to deck this very nice lady right in the face!"). But after a couple of weeks, the tissue starts to relax and then you start to crave the massages. It became the highlight to my week.

It was the fall of 2005 and there were a few symptoms that seemed to be hanging around. I figured that they would just fade in time. My eyes were still bugging me, I was having headaches every now and again, and my sleep was out of control. I figured that this was all due to the surgery and the physical therapy (but truthfully I was worried that I was still a slave to light and to sleep). Time passed and my eyes still hadn't quite full recovered but I was doing better than I had been in December of 2004. One crazy thing that changed in my life during recovery is that I had suddenly developed a sense of depth. Before, my world looked flat. My brain knew that the trees along the mountains stood up from the mountains, but when I looked at them, it looked like they all were laying flat against the mountain. My world had become a pop-up book and it was amazing.

It was February of 2006, I had worked a few jobs and was now preparing to go to college. I had applied to several colleges and all dropped my applications when I informed them I was going to have major surgery and would be out for another year. All that is except Colorado Mesa University (at that time is was still Mesa State College in none other but Grand Junction). They had called me before my surgery, told me they would keep my application pending until I was recovered and wished me good luck on the surgery. This had impressed me and I decided that this was the school I wanted to go to. I was going to school to be an artist, only problem was, I had lost my ability to draw. I had learned to draw with a lack of depth perception and with crossed eyes. Now that these were gone, I couldn't draw. I knew this would be an unpleasant obstacle but I was going to go to school for art, and that was final! 

Sorry about the massive delay in posts. These past couple of weeks have been very busy. I went to see a new specialist down in Aurora and I think we may have an answer. They also have prescribed some pain meds to help ease the pain while we wait for the next appointment. So the past couple of weeks were filled with traveling and getting use to the new drugs. But I am getting ahead of the story. TBall 

Charlie

It was now 2005 and the date for my cranial decompression was scheduled for the 7th of March. Now I just had to make it to March. Having a limb (or side of my body or side of my face) go numb was now occurring more frequently. I only ever experienced my entire body going numb once and I am extremely thankful for that. The pain in my head was increasing. Dr B had mentioned that what I was feeling was cranial swelling. The herniation was causing pressure on my brainstem and the pain I was feeling was across between a headache and a mini seizure (FUN!). 

During the month of January, I was growing concerned with two major problems: first and for most was I was going to have brain surgery but more than that, how was my family going to pay for it. We were told that the surgery was going to cost around $40,000 and we didn't have any medical insurance to speak of. I was beginning to panic, both my parents were working but we didn't have this kind of money. Little did I know that there were two blessings coming my way. During this time, dad had been talking to his "Men's Group" about all that was going on. Two members of the group, a father and son, asked my dad if they could start collecting donations from the community. A week later there were cans all over town with my picture on it, asking for help (on a side note: it is very weird to be standing in line at the grocery store and see a can with you picture, a quick explanation and a request for help. Now like I said, everyone in Meeker knows everyone else. This wasn't what was weird, what was weird is the fact that people would put money in the can and then wish me healing. What do you say to that? All I did was blush like an idiot and say "thank you"). The other blessing came around the same time. Mom was told about an insurance organization call "CHP+" (again, this is where I turn things over to the internet and rejoice for copy and paste).

CHP+: Child Health Plan Plus (CHP+) is low-cost health insurance for Colorado's uninsured children and pregnant women. CHP+ is public health insurance for children and pregnant women who earn too much to qualify for Medicaid, but cannot afford private health insurance.

Thankfully I was six months away from being 18. I was approved and there was a peace that took hold in my heart. Help was coming and it wasn't going to destroy my family financially. However, a new obstacle had arisen. The school was not comfortable with the idea of me missing roughly three months of school for surgery and recovery (I can't completely disagree with them on this issue, but come on, brain surgery was not on my top ten things to do my senior year). I remember we had a meeting with the school to discuss this issue. Mom and I sitting in a room with several faculty, the principle, and a few board members. I explained my feelings about the situation and was beginning to grow upset by the conversation. Mom, however, calmly listened and when she noticed I was pushing my very fragile limit she asked me to go wait in the hall (now, my mom is not a woman who yells. I have rarely, if ever, heard her raise her voice. That is not how she works. When my brothers and I were younger, she never yelled at us, but when we got in trouble, she would speak and you better believe we would listen. Usually afterward we wanted nothing more than to crawl under the couch and die from guilt or the impending punishment). When I left the room my mom spoke, calmly but with a very protective and stern tone. I can't remember what she said exactly, all I remember is thinking "glad she's on my side!". After about 30 minutes, she came out and we left. The situation had been resolved and all I could do on the ride home was look at her with a new respect (and fear) and think, "I am never, going to get on you bad side. That much is for sure."

So here we were, the 6th of March had come and mom, dad, Caleb (my younger brother) and I were in GJ and were at Chili's having my last meal before my required fasting hours. I remember sitting at the table barely touching my food, scared out of my mind. Mom was silent, dad and Caleb were eating. All the sudden, my dad puts down his fork, gently places his hand on mine, looks at me with fear in his eyes and  says, "Tim, I just realized, your going to have major surgery in the morning. I'm really scared!" Mom turned to him and said, "WELCOME to the party Jack!" and then began to cry. So here I am, white as a ghost already, mom is crying, dad is freaked out of his mind and this so happened to be the moment the waitress decided to check in on us. She came to the table and said, "How is everything, can I get you anything?" Caleb looked at her, looked at each one of us, looked back to the waitress and says, "I think we're good."

That night I laid in the hotel bed staring at the ceiling. Sleep was not going to happen tonight, there was no way. I remember trying to watch TV just to pass the time. As I sat there, I saw Caleb in the next bed (little jerk, I was going to have surgery in the morning and there he is snoring away! If I made it through, he was going to regret sleeping while I was freaked out!). Actually I remember wondering what would come in the next few hours. I had complete confidence in Dr B. The surgery seemed simple enough but the thought of sharp tools so close to my brainstem wasn't something one can forget easily. We needed to be at the hospital at 5:30 a.m. and it was now 4:00. I got up and headed for a shower. Shortly after I got out I heard a soft knock on the door. Mom and dad were at the door (didn't look like they got any sleep either. At least Caleb did and he would regret it!). The sun was not in the sky yet, but the colors on the horizon alerted us to it's approach. We walked into the hospital and my nerves were getting the best of me. I couldn't stop my hands from shaking. Thankfully, my parents were allowed to be with me during the entire 2 hour prep time.

In no time at all I was sporting the latest in medical fashion: a blue and white checkered gown, leg and foot stockings, wrist bracelet and IV to match (I felt sexy). The nurse that was assisting me and put in my IV was a wonderful woman. She had been doing this for years and she had me laughing and talking up a storm (which by now you can imagine may actually be physically possible for me if you get me on the right rant). And then she mentioned the catheter. Needless to say I was adamant about not having one (I may have freaked out just a little). I explained to her that I would hobble my ass to the bathroom if need be, but I was not going to have a catheter. She smiled at me and said "ok" (Ha! victory).  As time approached Dr B came into the room looking very excited and ready to begin. He told me that it was time to go and I looked at mom and though, this isn't so bad. Either I will wake up and see her and dad or I will take up and see Jesus. Besides, I was already dressed for the part, there was no going back now. I was wheeled into surgery and there I met the nurses and anesthesiologist (yes, hello, nice to see you, how are the kids?). Next came the face mask and I counted down.

The next thing I remember was a voice telling me to open my eyes, that I needed to look at the nurse (my thought was…. NO! I don't wanna) but I finally relented and squinted at the owner of the voice. Then I slipped back into unconsciousness. Next thing I remember was a sharp pain and then extreme thirst. Apparently I had made it and I was in the ICU. I don't remember much of that first 24 hours. I was told later that not only had a few people come to visit but I had also gotten quite angry at the automatic blood pressure machine. According to my mom, I not only expelled a lot of words that she had never heard me say (oops) but also some unfriendly gestures to the machine as well. I woke up the next day and I felt pain. But I also felt something else, I felt…. and I looked…. and there is was, a catheter! (they got me while I was out, sneaky!). Truth be told, I was very thankful for that thing, moving seemed to be quite a challenge. 

Later that day I was hauled up to the head trauma ward. Which seemed appropriate because my head felt like it was splitting open. To make matters worse, I was puking, a lot. I remember that for the next three weeks I would puke at least once (if not more) a day. All I can say is that "percocet, thou art heartless!".  The nights in the hospital were the worst. Most of the time I remember lying there in pain watching the clock tick, waiting for the nurse to bring me my next  batch of pills. I was having a really hard time swallowing, so they usually came crushed up in pudding or ice cream. I remember I would lay there wanting to scream from the pain. I was so nauseous I couldn't sleep. But it was during this time that I realized that my situation (as grim as is was) could have been a lot worse.

The man in the room next door was named Charlie. I asked a nurse about Charlie, I was told that Charlie was lucky to be alive. He had fallen down a flight of cement stairs. He had gone through 14 surgeries, mostly trying to repair his skull and brain. Charlie was now permanently disabled and mentally handicap. Essentially he was now "Rain Man" and extremely intelligent man stuck in the brain of a 3 year old. Every night Charlie had to be strapped to his bed so that he wouldn't pull at his staples or claw at his wounds. Every night Charlie would cry out, "Let me out, please let me out. I'll be good. Let me out!" It was heart breaking to hear the first few nights, but after a few nights of the crying, I couldn't help but want to say, "Let him out. He said he'll be good. Please just let him out!" Sleep didn't come during the nights and time seemed to have slowed to a crawl. 

As I sat here writing this post, I became humbled. Not only because of the collection cans around Meeker, but because I was someone who was blessed enough to just have Chiari type 1 and not someone who fell down a flight of stairs. In the past couple of years I had forgotten about Charlie and I am ashamed of that realization. While I am still in pain and the headaches are increasing again, while I seek for answers to this problem and worry about how I will pay for it, I need to remember Charlie's story. Even though he doesn't know it, Charlie changed my life that night. Possibly more than the surgery did and I need to remember that. I am blessed enough to write this blog. Blessed enough to do whatever I please. But mostly I am blessed enough to remember a man named Charlie. TBall

Man, did I feel stupid.

It's interesting… this journey has allowed me to watch and learn a great deal about the medical community. My only experiences with the medical community were few appointments and such every now and again (vision therapy doesn't count in this thought). Up until my appointment with Dr L I hadn't realized how many people were sick and in need of care. Even today, it is crazy to see how many people are in need medically. 

All I can say is… thank you to all the doctors, nurses, medical staff and everyone who works behind the scenes when it comes to the medical community. I have really been able to peek into your world, a world that I fear many people forget about. You all work very hard and help so many people, and I know that people are not at their most patient or kind when they are sick or in pain (myself being at the forefront of that little group).

I first got a glimpse into this world when we scheduled my MRI. As far as I remember, it was roughly a two or three week wait. When we asked if there was any earlier appointments, the reply from the receptionist was that the radiology center was booked solid. So two or three weeks passed and my parents and I drove to Grand Junction. I was terrified! I remember that I was so freaked out about having to get a shot (or worse, have to wear a gown!). The radiology techs were awesome and were a lot of fun to talk with. Then it was time to be inserted into the tube. Ah the tube… (everyone strap in, it's rant time). If any of you have been blessed enough not to have an MRI let me tell you a bit about it. On my list of things to do, this doesn't even make the cut. Now the techs work their hardest to alleviate any anxiety or nerves you may have (though, this may be for their sake. Having a patient screaming bloody murder from the tube may not be on their list of things to do either). But this thing is still intimidating. The machine is not small. You lay on this narrow table as the techs put on a pair of headphones on your ears, put a towel over your eyes (it helps you keep your eyes closed and for your eyes not to move…. I asked), then they slide this cylindrical, plastic guard (or case or whatever, it is like a part of the table that keeps your head in place) over your head, then the table starts to raise and then it starts to slide into the tube (oh, have I mentioned I'm claustrophobic? No? That's because I didn't know this until now! Great! Now I have to make sure I don't "man whimper" for the next hour and a half).

The tech comes over the headphones and asks if you are ok (my brain wanted to say, "well let us talk about the definitions of OK. Pull me out of this thing and we can have said discussion!" But instead I just squeaked "yeah"). Then the tech says, "Ok, we are about to begin, try not to move" (Really? You had to say it? Now my nose itches… and my hand is cramping… and we haven't even started yet.) And then the MRI begins, to say that it is loud is nothing close to the correct statement. They should tell you, "this machine makes the worst sounds possible. Please realize these sounds are not sirens, machine malfunction indictors, or the global alert of the zombie apocalypse. This is just how the machine sounds" (really, this machine makes the kind of sounds that we associate with run and flee! And yet, I was in this tube, with my face covered, and they had to raise the table to get it into the tube. It could be a fifty foot drop for all I know. Oh Lord, I am going to die in this tube! Death by MRI). And then the music comes over the headphones. The techs said it would help and they were right, it was helping… a lot (I had chosen the soft voices of Disturbed and Linkin Park to be my vocal guides for the next 90 minutes). If you focus enough, you can actually calm down (though my nose still itched). I was even starting to feel a bit relaxed. Then my mind started to wander and I began thinking of what could they possible need me to get an MRI for? How many people laid here thinking the same thing? How many people got good news? How many didn't? How many would remember this event as the beginning of the worst phase of their life? How many hadn't made it? That's when it hit me that there could be a major problem.

The ride home was quiet, facing one's mortality is not an easy experience. We wouldn't know what the MRI said for a few days, but still I was scared. Being that Dr L ordered the MRI, we would be returning to her office to hear the outcome. A week later we were back in Grand Junction (or GJ) and walking into her office. I remember that she was on the phone with someone saying, "Look! It's right there, he has it, it's right there!" I was preparing myself for the worst. Dr. L looked at us and said, "Timothy, you have a neurological condition called Chiari's Malformation. I have referred you to a Neurologist who can explain everything better." That day the ride home was even more quiet.

A couple of weeks later, we were headed to GJ (yet again) to meet with the Neurologist, Dr B. He was a really nice guy and we had a great time talking with him. He explained the condition, that I would require surgery (Cranial Decompression), what the surgery would entail, and that looking at the severity of my symptoms, that the surgery needed to happen sooner rather than later (At this time I was in tremendous pain. My head, not for one moment in the day, would stop pounding. I would go to bed with the pain, walk up in the morning with the pain, and even wake up in the middle of the night from the pain. My eyes were also failing. I was actually loosing my sight, my world was not becoming dark, it was bleaching out. I couldn't handle coming out of the basement for very long, I was even wearing my sunglasses at night because the streetlight's light was so intense). Dr B said he would like to schedule me for the decomp. in February. I said no, with as much time as I was going to be in recovery, I wanted to graduate high school first. Even though I had completed my entire year's of work incase I had to have surgery, I wanted to walk with the rest of my class. Dr B advised against it but he agreed that we could schedule the surgery for late May.

As December of 2004 approached, my symptoms began to worsen even more. The pain was actually causing me to not think clearly, I was slurring my speech, and parts of my body would go numb randomly (there is now way to recover gracefully when you fall on your face because your leg instantly goes numb). The pain had become so unbearable I was staring to become frantic and angry. I had no clue why God deemed it necessary for me to be in so much pain. (Now I know, Dr B said the surgery needed to be done soon and that I had said no, I wanted it later. Graduating was very important to me. I had worked so hard to overcome my reading problems and vision therapy and pain for three years, there was not way I wasn't going to graduate. I didn't want to wait a whole other year to graduate. I just needed to make it to May and then I would do whatever I needed to, to become healthy). 

But the pain, it was so strong. I had lost most of my vision (being an artist this was almost worse than the pain). I was so angry, I remember I was in my room in the basement, middle of the day and I was hiding from the world, sitting in darkness with a throbbing head. I was so angry I was shaking. I remember saying to myself, "God, I hate you. You are more cruel than you would like people to think. You are a wicked and vile creator, wanting nothing more than humanity to think you are mighty because you are so pathetic. I will not be one of those people, I curse you God. I curse your existence and I will never seek help from you again. YOU ARE NOTHING TO ME!" I had never been so sure of something in my life. I stood up and walked to the door. As I did so, my entire body went numb. It happened so quickly I couldn't even inhale. My body just crumbled to the floor. I remember feeling the carpet fibers burn against my eyeball but I couldn't even will my eye to blink. I know this wasn't a very long occurrence because I didn't loose consciousness. But to me, it felt like a lifetime. My mind raced in panic. I remember I started to weep, as the tears and snot ran across my face into the carpet, but I couldn't wipe any of it away. "NO" I screamed in my head. "No God! Not this way. DON'T let me die this way! Don't make mom find me like this! She can't find me like this! PLEASE!…. please………..please."

I couldn't tell you how long I laid there (probably only a few seconds) but I suddenly inhaled and blinked. When I regained feeling in my arms, I scooted next to my bed. There, all I could do was shake and sob. I cried so uncontrollably I had a hard time breathing. I wasn't thinking a single thought, I just sobbed. While I did so, a calmness suddenly overtook me and I heard myself speak inside my head, though it wasn't my internal voice but a voice none the less. It spoke with a sternness that terrified me and yet made me feel safe all at once. "Do NOT ever think that I don't love you! You are mine and I love you more than you can imagine. Do you think I do not share in your pain? Do you think it is nothing to me? I have claimed your soul as mine! This and my love you can NEVER escape." Man, did I feel stupid. 

I remember mom running down that stairs and come bursting though the door. She must have heard me sobbing. The look of fear on her face is something that will always be imprinted on my mind. I told her about my body going numb and that it scared me (I didn't mention the other part. I still was confused on what had really happened. Had God really just spoken to me? I was expecting something more to do with clouds rolling back and trumpets from angels. Not a voice that wasn't mine in my head). Mom checked me over to make sure I was ok and had feeling back in my limbs. She helped me up the stairs and then was across the room (with lightning speed) and calling Dr B. The surgery was going to be scheduled for the soonest day possible. 

I wanted to take a moment and talk about this last post. I was absolutely terrified about writing this chunk of the story (and it took me four hours to do so). Even knowing that I would have to write this part, scared me so badly I talked myself out of creating this blog three or four times. I have mentioned God in previous posts, but not like I did in this one. While I fully understand that my body going numb was a result of the pressure building from the herniation in the back of my skull, my heightened emotions, my extreme anger, and ignoring the advice of my neurologist, the event with God happening at the same exact time was not a coincidence either.

God is so intertwined to this story and to my life personally, that to try and write Him out would be ridiculous. That being said, I am not here to preach. I am not here to tell you what you should believe. That is not my place and it is not the purpose of this blog. I am telling my story, as closely as I can remember it. My walk with God is unique to me and it's a huge part of my journey with Chiari. It is not my intent to offend anyone or make them feel as though I am shoving my beliefs down their throat. TBall

I'm not going to do it!

I mentioned earlier that I misread my schedule and missed a day of work. Let me explain what I meant. This wasn't a quick glance mistake, I would take the schedule down and meticulously follow the days and write down when I was scheduled. Before I would leave that day, I would check and re-check my notes next to the schedule before I left. To me, what I saw on the schedule and what I had written down were absolutely identical. Even when I was informed I had missed a day, I re-read the schedule and still couldn't see what they were talking about (I just wanted to explain that a bit better).

Although I had dizziness and headaches after vision therapy, my reading skills had improved. They weren't going to win me any reading contests, but at least I knew what days to be at work. So my reading had improved and I was ready to start my senior year a new man. I was not expecting to have light become my enemy. Now from what I read, photophobia is an aversion to "bright" light. But to me, all light is bright. The light that a lamp gives off through a lamp shade is just as bright to me as a bare lightbulb. If I am in a room that is all dark except for one light, my eyes still hurt from that one light. Over the past 8 years, I have learned a few tricks but really, light still hurts my eyes (one of my deepest fears is that it always will). 

Do me a favor, look around you right now. Look at all the light sources in the room in which you are sitting. Now that you recognize the different sources, look around at all the light being reflected or bounced off of all the objects in the room. Out of habit, this is what I do in every room I walk into. I quickly assess the light and reflections in a room and choose how to approach it. I will find the sources of the most light or the most painful light and sit in a way to avoid that light. For example: I sat down at my computer tonight with one lamp on in my room. Before I started typing, I looked around and realized that the lamp was reflecting harshly (at least to my eyes) off my water bottle on my desk. So I moved the bottle around until I found a spot in which it didn't catch the light. 

Trying to totally avoid light during the day is right up there with trying to only breath pure oxygen from the air around you (it's not gonna happen). What I do is try to avoid the worst of the light. I wear my sunglasses everywhere, even on dark rainy days. I am never outside without my sunglasses, better yet, I can't be outside without my sunglasses. I wear them inside buildings and restaurants (people look at you as if you are some poser who think's he's bad ass. All I can say is, I don't "think", I "know"). :)

Several days had passed since the room caved in on me and my headaches had increased even more. I no longer recognized them as headaches but rather thought of them as migraines. Reason being is that the pain seemed to be on a whole new level than what I had experienced with all the headaches in the past. Light had become my enemy. It was so intense and leaking into my eyes from all angles. Direct light from the ceiling lights, beams of light coming in from the windows, light reflecting off of any surface, all marching into my eyes and leaving pain in it's wake. During the day there was no way to escape it, it was all around me. 

A few months into my senior year and my eyes were getting worse. My reading began to slip again, I almost always had a migraine, and my mood had become something most foul. I was irritable and angry, I would snap over the littlest things and my mom decided that this was more than just the normal teenager angst. She came to me and asked if I was ready to go back to vision therapy. My reaction was less than calm, I exclaimed to her that I "would never!" step into the man's office again. He never believed me and I was not going to go through that again. She then calmly asked me if I was ready to get a second opinion. I wasn't exactly thrilled with this idea either. What if this second opinion didn't believe me? What if he/she said the same thing, that I was just making this up for attention, I was a teenager after all. I didn't want to face another person that would quickly judge me for my age and maturity without really considering what I was saying.

In the end I realized mom was right and we called a specialist in Grand Junction. Dr L was a specialist that primarily works with vision problems in small children. Seventeen year olds really weren't in her demographic, however, for some odd known reason she said yes and two weeks later we were in her office. By this time, my eyes were quickly failing, my world was getting brighter and brighter. I sat there, having an eye exam (an event that had become common place for me in the last two years) and hoped and prayed that Dr. L would say something along the lines of, "yep, there's a major problem". She sat back from her equipment and turned in her chair to my parents and said, "Well your pervious diagnoses is correct, he has Esotropia and Esophoria. The only thing to do is more vision therapy." My heart sank and I got a lump in my throat as the anger swelled within me. I clenched my fist and said, "NO! I will not do anymore vision therapy. It hurts and I refuse to do it. I can not handle the headaches it gives me!" At that very moment, Dr L turned to me and said, "what?". I said, "it hurts my eyes and gives me headaches. I'm not going to do it!" Without even a blink, Dr L quickly turns back to my parents and says, "We need to schedule him for a MRI as soon as possible!" (Wait! An MRI? That's more than the reaction I wanted to hear!). TBall

And so the journey begins...

So here is how the whole journey started. I was born on May 1st in the late 1980's. It was a rainy day (or so I am told. I don't really remember). Ok that seems a bit dramatic, let's see if we can reel it back in a little bit. The actual journey that would ultimately lead to me writing this blog began in 2001, the year I started high school. It's really weird to think about it being that long (trust me, I did the math twice). 

It was a day like any other, my family and I were at the mall in Grand Junction. I was having an eye exam because I wanted contacts (lest my glasses appear nerdy to my new high school peers). I remember the eye doctor commenting about something and asked my mom to come take a look. Apparently he was showing her that my eyes didn't match up. What that meant and if it was a problem was not expressed, so we went on with our day. That year of high school progressed as any freshman year would. I didn't play any sports because I am a horrible athlete. I can't catch a ball to save my life.

During the middle of my sophomore year, my grades plummeted from a B average to F's in the span of about two weeks. Let me lay in some background info here. Ever since I was little I had troubles reading. My mom actually found out when I was in the 3rd grade that I didn't know how to read at all. I had actually manipulated and guess my way through 1st and 2nd grade reading. When 3rd grade came around my mom started home schooling us (something I don't think any of us enjoyed, including mom). But that left my mom with the task of teaching me how to read. To say that I was a stubborn little…. "angel" is no understatement. I just had the hardest time learning to read. I wasn't good at it, I fought it with mom and I generally would do anything to get out of it. But in time, I learned how to read but it was uncomfortable to do so and I was horribly bad at it. I would take me a few hours to read a chapter of a book, I would have to re-read a sentence multiple times just to understand it. But I learned how to limp along and when I went back into public school in the 8th grade I did ok. This "ok" extended through my freshman year. But when my sophomore year came I started really struggling and misreading everything at school.

During this same time I misread a schedule at work and missed a day. I had taken a trip to Grand Junction to go christmas shopping with some friends. As hard as I tried, I just could't read things correctly. Misreading my schedule did not go over well and it was then that my mom asked me if I though I was dyslexic. I admitted that the thought had crossed my mind. It was time to find out.

Ok, let me take a time out here and explain my hometown of Meeker, CO. This is important to understand the rest of the story. Meeker, is a small ranch and farm style town in the Northwestern corner of Colorado. It is almost dead center between Rifle, CO and Craig, CO. Meeker is known for its hunting. A lot of hunters come from all over the U.S. to hunt in and around Meeker (in fact, Meeker is full of hunters at this very moment). Its a small town where everyone knows everyone and everyone's business. It is a beautiful place and I tell people it's a wonderful place to live and raise a family. To better illustrate Meeker's small town(ness), the closest McDonald's, Starbucks, or Walmart is an hour away in each direction and by hour I mean "winding, deer infested mountain road" hour. Grand Junction, being only two hours away is the largest, closest city. Moving here from Denver when I was massive culture shock.

So it was time to find out whether I was dyslexic or not. There was an eye doctor who's practice was in Craig, the town north of Meeker, but two days out of the week, he would come to an office in Meeker. We scheduled an appointment with him and in a few weeks  that appointment came. The eye doctor examined my eyes and diagnosed me with Esotrpoia and Esophoria. This is where I turn things over to Wikipedia for a moment (and rejoice for "copy and paste"):

Esotropia is a form of strabismus, or "squint", in which one or both eyes turns inward. The condition can be constantly present, or occur intermittently, and can give the affected individual a "cross-eyed" appearance.

Esophoria is characterised by inward deviation of the eye usually due to extra-ocular muscle imbalance.

Long story short, I was going cross-eyed (really? One could become cross-eyed? I though one was born that way?). The eye doctor explained that he had a colleague in his office in Craig that works with patients to fix vision problems such as these with "vision therapy". This meant that for several months, I would have to drive to Craig, an hour before school ended for the day, two or three times a week for therapy. 

During this time I had my driver's permit. Needless to say, most of my hour requirements were met with trips to Craig. Mom and I spent many hours driving to and from Craig, truth be told now (though I would have never admitted it at the age of 15, but those were some of the best hours of my life. Mom began teaching me and showing me who God really was and what is was like to have a personal relationship with him. Outside of church and religions, just a "walk" with God. I remember listening in awe at some of the stories and experiences she would tell me. How she would feel the Lord lead her through a situation or hear the lord speak to her. I remember thinking… "well I want that, how do I get that?" It was then I began my walk with my God). 

So vision therapy began, it was a lot of eye exercises and vision manipulation. An example: one homework exercise was to take this long string with a yellow, green and red bead, tied at different lengths along the string, and tie one end to a door knob. I would then hold the other end to my nose. What happens is that your vision, while looking down the string, will make it appears if there are two stings crossed over one another. I was to force this "crossover" to go through the 1st bead and then the second and then the third (rinse and repeat). Its the same idea as if you hold your index finger in front of you face. When you focus on your finger (you should see two backgrounds behind your finger). Now focus on  the background, looking past your finger (now you should see two index fingers). 

On a side note: I am smiling from ear to ear imagining people reading this and now are sitting in front of their computer staring at their index finger. :)

A month or two into the therapy and I started getting headaches. I would comment (and sometimes complain) about them to the therapist. He would tell me that I should feel "some slight" discomfort but that the therapy was giving me headaches was doubtful. A few months past and I now had my license, it was the summer of 2003, and I was driving myself to Craig for therapy. At this time I was beginning to really hate going. Therapy was getting harder and my headaches were getting stronger… and then the dizziness came. I kept telling the therapist about the headaches, the eye pain and now the dizziness. He would dismiss my comments and act as if I was just being a wimp. 

Junior year had started and I was still going to vision therapy (the bane of my existence at the time). Each session seemed to cause my now ever present headache to increase. One evening as I was driving home, my dizziness became so intense that my vision blurred and I almost drove off the road. When I pulled the car over, I sat there and shook for about 30 minutes before I had the courage to continue home. I told mom about what happened and she decided that she would try and take as many afternoons off and drive me. Some days however, she just couldn't. And I couldn't have a repeat of what had happened last time I went alone. So one day when mom couldn't take me, I decided after my therapy session, I would try and sleep in the car for a few hours and then drive home. I quickly found out that you could not sleep in your car in that parking lot. A policeman kindly woke me up and told me that this was a private parking lot and that I was loitering. So I drove across the street to the Kmart and went inside. I asked to see the manager and asked if I could  sleep in my car for a few hours before I headed home. He said yes but the look he gave me made me feel like a freak. This was the day I became a slave to sleep. 

So this became my routine when mom couldn't take me. After hour and a half of therapy, I would get a headache and become dizzy. I would then drive across the street and sleep in the Kmart parking lot for a few hours and then drive home. This may sound ridiculous but I was told therapy was the only way to fix going cross-eyed. What choice did I have? My parents didn't have much money and the therapy was expensive, I had to suck it up in order to get better, so mom and dad didn't have to spend anymore money. I had to get better! I WASN'T going to be the sickly, expensive, problem child anymore!….. Little did I know what was waiting for me in my future. 

My senior year was about to start and I had finally been freed of the bondage that was vision therapy. I even had a souvenir, headaches (score!). In the middle of the first day of school I experienced something new, as I sat in the classroom and all the sudden all the light in the room exploded into my eyes. It was like staring into the sun, the pain was so intense my eyes began to water. And then just as quickly my head began screaming and my world began to darken and collapse on me. I can't fully remember the rest of the day, I just remember the pain. August 18th, 2003 was the day I became a slave to light. The day that everything changed. 

Its funny, they say that pain fades in time. Mothers can comment about how painful child birth is (reason 4,682 I'm glad to be a guy) but the actual pain seems to fade from memory. I'm not sure if this is true but if pain fades, the emotions during the memories sure don't. Its very interesting and sometimes hard to relive these memories. I had packed them away so that I would never have to think about them again. Like that one drawer in your house that you just shove random or unwanted stuff into, hope the day never comes in which you might have to go through it all. And so I would like to thank you for reading this post, it makes me feel like I didn't have to go through these oldest memories alone. TBall

"Let It Be", I need to "Let It Be"

Before I start telling the story that has lead to today, I first want to explain why my blog is titled "I have Chiari Malformation Type 1" and yet the header of the blog says "Let It Be". A few days before I started this blog, my life came to a crossroads. All the events that have transpired since February began to intensify and overwhelm me shortly after I graduated from CMU in May. My symptoms were also increasing in intensity and the pain was escalating, again. Being a control freak I am not happy with my situation. Thoughts were beginning to surge through my mind, overwhelming thoughts that were pushing me into a really dark place. I couldn't help but think of everything at once: 

"It shouldn't be this way."

"I've already had the decompression surgery, I was told that it would fix the problem!"

"Maybe I'm wrong, maybe I need to just suck it up, maybe I'm just being dramatic."

"I guess I'm not as tough as I thought I was."

"I feel like my future is nothing but a joke."

"I was ready to go on with my life, go to grad school, but those dreams have eluded me, all there is now is pain."

"Why won't all these specialists believe me that I hurt?"

"I wish I was healthy or strong enough to just get a job."

"I can't believe I just spent all of my savings to see these specialists without getting a shred of hope."

"I don't want to move back into my parents house, but what choice do I have?"

"All I am is a burden to my parents."

"My loan payments start in a month, it is wise to defer them; if not then how am I suppose to pay them?"

"My eyes hurt!"

"If I have to have another surgery, how am I going to pay for it. I don't have insurance. Mom and Dad don't either!"

"There is no money!"

"I don't want to die, but I'm not too excited about being alive right now."

"I just want to escape. I need to escape."

"What am I going to do?"

"How do I get help when all the specialist have no answers."

"I have to change this. I need to control this!"

"My head hurts."

"I have to get away!"

"God, where are you? Why can I not feel you? Why can't I hear you? What have I done?"

I sat in my room with these thoughts churning in my brain. I felt hopeless, my future seemed to be crumbling. Not even 7 months ago I was planning on going to grad school, moving to another state, establishing the next phase of my life. Now I was broke, living with my parents in Meeker, eating their food and using their money to see doctors. I felt like my faith was withering, a faith I had spent many years and obstacles cultivating with God. A faith that was my own personal walk with Him, turning to dust before my eyes. My head was pounding so strongly I had to stop and get ready for bed. Sleep has always been my only escape. 

So I got up and when to the bathroom to brush my teeth. It was about 11:00 pm and I knew mom and dad would be in bed. I walked up the stairs and I saw the faint glow of the computer from the living room. They must have forgotten to turn it off. I walked towards the living room and there sat mom at the computer. She was desperately searching the internet, looking, searching, hoping to find an answer. I watched her look at a website and sigh when no answer was to be found. She would then try another and then another, she wasn't going to give up. 

This is not one of the most masculine moments of my life but here we go. When I saw my mom at the computer, it broke my heart. She should be in bed, peacefully sleeping before work in the morning. Not trying to figure out how to help her "broken" son, searching for hope in the darkness of the night. I got pissed! This may not be fair for me, but this is certainly not fair for her! I turned right around and went to my room and sat down at my computer. The cursor was blinking in the search bar on google. But I couldn't think of where to start?

I realized I couldn't stomach another search that entailed my symptoms. According to the neurosurgeon and another neurologist, these symptoms that I was experiencing were not connected to my surgery or my diagnosis of Chiari Type 1. They felt that the surgery had taken care of the Chiari problems and had nothing to say about the symptoms I was experiencing now. I took them for their word, that somehow I was at fault here. I was making this bigger than it was, that there was not actual problem, I was just a wimp.

These thoughts fueled my anger. So I searched for Chiari patients and what their experiences were like. That's when I found a blog "My life with Chiari Malformation Type 1". The author, Jenn Ann told her story from the moment she was diagnosed all the way through her recovery. It was very comforting to read about someone who went through what I had gonenthrough. But more importantly, there was a key detail to her story. She had her surgery performed  at the Chiari Care Center at The Medical Center of Aurora. (WHAT!? You have got to be kidding me! There is a clinic in Aurora that works almost exclusively with Chiari Malformation. But more importantly, it is in the state that I live in. How did I not know about this?)

Well its simple. I was 17, in a tremendous amount of pain and when I was diagnosed back in 2004. I was told, "this is what we are going to go", "this should fix the problem", "and we are performing the operation right here in Grand Junction (a city two hours away from Meeker)". I was so ready to be pain free I was trying to put on a gown before the doctor was done talking. :) So yes, I will admit, I didn't do one ounce of research when I was diagnosed. I was so happy there was an answer after two years of searching. I wasn't going to rock the boat.

So, by the time I found Jenn Ann's blog, my most recent MRI (I still don't like being shoved into a tube, but the music through the headphones helps) had been taken and the report stated that "everything looks fine". I had to disagree. Currently I am running for mayor for the town of "I Hurt" which is found at the crossroads of "I'm Not Fine" street and "Something is Wrong" avenue. But there was now a chance again. It was time to call the Chiari Care Center.

During all of these events, the questions I mentioned earlier were still ever present. I felt an anxiety building within me. I was being sucked into a vacuum of darkness and anger. I had to figure out how to clam down or I was going to loose it. Then I remembered my best friend Leisha. Before I had to move back to Meeker, she came to Grand Junction for work. While she was here, she planned on getting tattoo. She planned on having "Let it be" tattooed on her foot. I asked her why "Let it be"? She told me the story of her learning to "let it be" when she had her daughter Piper. I knew the story she was talking about, we had talked about it several times. Leisha and her husband Ray went through every expecting parent's worst nightmare. Leisha was having complications and it only by the Grace of God that Piper is with us today. This event has forever changed Leisha and Ray, and from that event Leisha had learned to "let it be". 

So there it is, I realized what Leisha meant a few months back. I (the control freak and perfectionist) need to learn to… Let it be. But only through this entire 8 year journey could I have learned just what "let it be" means to me and my life. TBall