What I Did On My Summer Vacation

It's summer. You know, the time of year that teachers look forward to with anticipation and a slight giddiness. I would love to be on a beach somewhere, or in the mountains, or exploring the French countryside...or even accomplishing some of my summer projects from "the list". I'd rather be doing anything other than fighting anxiety and depression accompanied by chronic pain. But for the past 5 years or so, that's how I spend my summer vacation.

It's out there now. For all to see.

I have decided to go public about something that most people would prefer to keep hidden--whether they're the one afflicted, or the one hearing about it. But you know--hiding just isn't working for me anymore. The pain aspect is somehow easier to put out there, though I don't like to. But start talking about depression and anxiety, and yikes. It doesn't help that I have one of those double whammy lifestyles. "You're the preacher's wife. You probably need to keep those things to yourself." "Whatever you do, when you step into that classroom, leave your personal issues at home." And I've done just that-- to the best of my ability. I have suppressed feelings, swallowed anger, and cried in the bathroom. But you know what? That still leaves June, July, and part of August--minus workshops, meetings, Sundays, Wednesdays, VBS, and assorted and numerous other church activities--to contend with. The void. I have approximately 45 days every year to drop the mask. Scattered days in June, July, and August to slow down and process. Add a healthy dose of severe chronic pain to the mix, and let the battle within begin. It never goes well.

I have tried medication. But the side effects range from inconvenient to alarming. I have tried to relax, but I am overcome with guilt. I have adjusted my diet, cut caffeine, added supplements, pushed my water intake, experimented with everything from gluten free to you name it. I have prayed more, watched television less, read books, and started my lifetime exercise program for the hundredth time. I have been to the doctor, who sent me to the neurologist, who sent me back to the doctor, who sent me to a rheumatologist, who sent me to another neurologist, who sent me to the gynecologist, who suggested I dabble in Eastern medicine for a while. Unfortunately, insurance is not keen on Eastern modalities. While I wouldn't object to trying something new...money is an issue.

I don't know if it's age, or circumstance, or weakness, or (I've been told) lack of faith. I'm not sure what age has to do with it, other than certain seasons of life are just more difficult. Circumstance is huge in this case. As much as I wish I could say otherwise, I've not healed or recovered from several years of being a caregiver. Maybe you never do. Weakness? When people tell you forever that you're strong, you feel obligated to be. Whether you are or not. Faith? You can tell someone all day long to have faith. But it doesn't work that way. Oh the countless platitudes.

When we went from the hell of RSD with Conner, to a complicated form of epilepsy with Caleigh, RIGHT into stage 4 cancer with Russell--there was no stopping to catch your breath. Our oncologist sent us to a psychologist, because he was worried about the stress level in our lives. When I think back on that day, it was just that. One day, at one appointment, after one question, I let a single tear fall in front of the oncologist. He made an appointment for us, and after a fifteen minute meeting the psychologist said we were fine. And maybe we were at the time.

 So many people did so many things for us during the worst of the storm--and I am eternally grateful for every single act of kindness. But there are things that no one can do. Things that no one can see. No one, and I'm sorry but I don't care who you are, no one can prepare you or adjust you to the new normal. You can call it self pity, you can call it a lack of faith--I've heard it all. I think, and feel free to disagree with me, but I think that families in ministry are sometimes held to a different standard. Is there a font for sarcasm? I'm human. I'm tired of internalizing. And yes, I internalize. I'm an outspoken introvert. Things that seem small have a way of being magnified these days.

As an example, one of the things that is just so painful for me at the moment is the whole ordeal with my driver's license. Most know, but just in case--during the craziest of crazy times for us, my DL expired and I never saw the reminder that they send in the mail or had ANY idea that it was expired. About a year ago, I was cashing a check and the teller noticed. I was mortified--thought I would have to pay a fine, but more than that I was just so angry with myself for letting that happen. I had no idea what renewal would require. I am still trying to get the paperwork together to go and take the written test as well as the driving test. If you haven't tried calling the DMV lately, you have no idea. Just trying to finalize some things today, I called the DL office in Floresville 93 times trying to get through. That kind of time during the school year is hard to come by. During this past school year we just decided to operate with two vehicles. One going to the prison every day, and one going to Runge. It worked for us. I have endured everything from good natured teasing, which I'm fine with, to all out ridicule that this happened. I do not enjoy feeling out of control of the simplest things in life, nor do I enjoy being ridiculed. Or being told that I'm an inconvenience to my family. In all honesty, part of my anxiety is directly related to the issues we have on the roads in our county. I have attended three heart breaking funerals. And I know what the Bible says about anxiety. I promise I do. 

I'm going to stop here. While I'm okay publicizing my own issues, I'm going to respect my family's right to some semblance of privacy. If that's even possible. I just felt like today was a good day to announce to the world that I'm a real person, with real emotions, and real struggles.

The One Called "You Just Get Special Treatment Because Your Mom Is a Teacher"

I decided to become a classroom teacher in 2002ish...when Conner was in 1st grade and Caleigh was an adorable, albeit feisty, toddler. I had played with the idea, and talked myself out of it, multiple times. I was blessed to enjoy a couple of years at home when Caleigh was born, and I watched the children of two of my good friends to make ends meet. Truth is, when Conner started school, I found myself there more than I was at home. I had been told for years that I belonged in a classroom--so I ignored the voices in my head and enrolled in a post grad program through LeTourneau University. Somehow, through an unexpected move, Caleigh's terrible twos, and various other life curves...I graduated with a 4.0 just in time to apply for a teaching job in the summer of 2004. Being new to the area, not knowing TOO much about Karnes County--and not believing half of what I heard--I applied at every school in the county and then waited. For about a day. My first interview happened to also be my last. I started teaching 2nd grade in Runge in the Fall of 2004 with a happy heart and stars in my eyes.

My entire 10 year (public school) teaching career has been in Runge. The community has completely captured my heart. I've been asked to come and apply at other schools, but I just haven't been willing to leave. Caleigh has known no other school, Conner has been at RISD since 3rd grade. They love it. But every once in a while--okay, maybe more often than I care to admit--we are visited by enemy #1 of school teacher families. "You just get ____________(special treatment) because your mother/father is a teacher/principal/whatever at the school." Allow me to tell you what my children have received--all thanks to my job.

1. An exhausted, stressed, monetarily strapped parent. There are easier jobs, higher paying jobs, and jobs where I wouldn't spend an unbelievable amount of our own money on a regular basis.
2. A school day that lasts, often, from 7 a.m. to 5:30 or 6 p.m. Those are normal days. It gets worse.
3. Days upon days of time "hanging out" at school during the summer when they were little. I have carried my sleeping 3 year old into school at 9 o'clock at night and she took many a nap in my classroom library on a bean bag.
4. Thankfully it doesn't happen often, but they have even been targeted by a teacher BECAUSE I work there. Those people don't last long at our school, but it stinks when you are an easy target.
5. Excluded from a citizenship award because "You're always getting something." (That was not in Runge by the way, but during my student teaching. SERIOUSLY?)
6. Shooed away by Mom because she is frantically trying to get grades entered into the computer--when all my child wanted was to have story time before bed.  Yeah, I haven't forgiven myself for that one. I could still cry about it.

You get the idea. And yet...those cries of "Unfair!" persist. It might surprise you to know that I don't even have an access code to check my kids' grades. If I want a conference, I schedule it. Not that my doing so prevents people from stopping me in the hall to discuss things best left for a conference. I sincerely believe that Conner and Caleigh make good grades in large part because they have been read to since, well, since they were in utero. As often as possible, we still believe in the family dinner table. We have conversations. I try my dead level best to make sure that their assignments are up to date and complete. If they need tutorials...they go. If they are scheduled to take medication, I make sure they take it. If it's a school day and it is at ALL possible, they are present. If there are tryouts for something, GASP! they try out. Sometimes they make it, and sometimes they don't.

I don't know how else to explain that teachers' kids are just like any other kid...when they work hard they succeed, and when they slack off or quit trying, they don't. When I as a parent do what I am supposed to do, their success comes more easily. When I slack off or fail, it shows. So yes, I guess my kids are pretty successful. In spite of the fact that I am a teacher.

Here's The Deal...

I know that by putting this out there I am opening myself up to ridicule from the sports world. I know this. And yet...I know at least 2 or 3 people who want to know why I went all, well, you know, on a  basketball coach tonight. I know trash talk is the norm. I know, I know, I know. But he got personal and he did it right in my face and well, you know me. As our guys took the court tonight against this 4A team...we're 1A for those who don't know...he turned around to his team, looked at us, and laughed and said, "Forget the plan we had. This is just a bunch of fat kids. Just run. Wear 'em out. They can't keep up with us. Look, 1...2...3 fat kids, at least. Ha. Just a bunch of fat kids. We got this." His team laughed and the tone was set for the rest of the game. My son was not even on the court. I went all spider monkey for other people's sons. I do that on occasion. I'm no hero, but I AM a believer in respect. Those "fat" kids are boys that haven't been out of football playoffs for very many weeks. We don't have the luxury to have a "basketball only" team. Our kids do EVERYTHING. And they do it well. It was interesting, every time he told his team that they needed to work on something tonight, the response he got was something like, "WTH Coach. Look at the scoreboard. We don't need to work on anything." I bet I heard one kid say that at least 15 times tonight, and he wasn't the only one. I don't know. I just think that he could have handled things a little differently. Yes, it's a sensitive area for me. I informed him, during our little visit, that I KNEW he wasn't talking about my son. My son who, by the way, lost over 85 pounds using sheer willpower, hard work, and determination. No surgery, no pills, no gadgets. He wanted nothing more than to play basketball his senior year. And he's doing it.

So here's the deal...I told Coach Whatshisname he had a talented team. That they played an excellent game tonight. And that he was classless. I sort of just feel sorry for him.

Reasons I Think God Relates to Third Grade Teachers

Seriously.

1. I said this today:  "WHY do I have to tell you everything OVER and OVER? Why can't you just do what I say? I GAVE you the instructions. I read them to you. Four other people asked the same question before you and I answered THEM. WHY MUST I SAY IT AGAIN?"

2.  I find myself saying this (inwardly) all the time:  "I want SO badly for you to succeed--for you to want what I want for you. And it hurts to watch you not care."

3.  I say this:  "WHY ON EARTH can you not all just get along? We are a classroom family. We are in this together. We need to be kind to each other. Words hurt. Your actions hurt. Ignoring people hurts. JUST BE NICE."

The point? God is in charge of the universe while I (try to) manage a relatively small group of 8 year old children. I am human, impatient, irritable, and sometimes unforgiving. I feel helpless when it comes to cultivating any type of intrinsic motivation in my students. He can, and does, change hearts. I'm not sure what the lesson in number three is, other than I'm pretty sure that NEITHER God nor I like this trait of humanity. I just have to keep following His instructions--and letting His work be completed. Above all, I need to remember that while they may not see Him in all areas of their lives, they see me. Let my treatment of them be a reflection of His love and care for me.  Because He loves me even when I ask the same questions over and over. Even when I seem to have blatant disregard for His will. Even when I'm not a shining example of getting along with others.

Dear People in the Stands

As badly as I want the next line to be "who think you know everything"...I'll refrain. These thoughts have been wandering around my heart and mind for several weeks now. I shouldn't have to write this post, but I feel that it needs to be said--for a multitude of reasons.

I find myself wishing that you were required to pick up a special pair of glasses at the entryway of the gym/stadium. Glasses that would enable you to see the athletes on the court/field for who they really, truly are. Because you see, all is not as it seems from your lofty seat. You think you know, but you only know in part. To your untrained eyes, you see what looks like lack of effort or refusal to be quick on your feet. My eyes see a child who just took the maximum dosage allowed of anti-epileptic medication and is struggling through a fog of medication induced haze, jolts of electricity every five minutes from the stimulator placed in her chest/brain, and the occasional break through seizure. Not to mention residual headaches from the pseudo tumor which has left her optic nerves swollen.

She doesn't HAVE to be out there. She WANTS to be. No one made her. She has the sheer will and determination to continually operate outside her comfort zone in an effort to be all she can be. And she isn't the only one with a story. Some stories play themselves out on the athletic field/court, some in the classroom, some in a child's home life. Rest assured I don't cringe when your child steps up to take a standardized test--so reciprocity would be nice.

I'm not looking for sympathy, just understanding. I think I speak for most if not all student athletes and their parents when I say that all any of our kids are seeking is really quite simple--a cheer and a pat of the back when things go well, and encouragement when things don't go so well. For the most part, that's the way we operate at our sports events--celebrating each individual and loving them all through the wins and the losses. But there are some, and I am confident that they will not be the ones reading this, who just don't get it. You see, in a way, I DO have those special glasses. As the parent of a child who has obstacles to overcome, I see things in a different light. And whether you realize it or not, I see and hear things clearly.

I don't know why God chose my family to experience the things they have experienced. You don't know either--although you may think you do. Certainly our goal is to live life in a way that focuses attention not on the difficulties we have faced, but on the blessings we have received. For that reason, my children set goals, set them high, and go after them with abandon. They have been encouraged to find what they love doing, and to do it. Sometimes best effort takes on a different form than your limited vision can encompass.  And if you choose not to embrace that, you are the only one who loses. 

R-E-S-P-E-C-T

I'm afraid, as usual, that I have more questions than answers in this blog post. Straight to the first question--Whatever happened to plain old respect?

I have had one of the most difficult days ever in the classroom--as a matter of fact, it has been a rough start to the year.  On top of that, my son is beyond upset after coming home from YET ANOTHER failed band practice. He is learning a tough lesson at a young age as assistant drum major--that kids these days have little motivation, scant attention, and zero respect. Not all of them, but enough of them to ruin it for the rest. I live in a small town, teach in an even smaller town, and I don't want to hurt anyone's feelings. But quite honestly, we have a problem here.

I have learned over the years, that it is best if I am transparent with my students and their parents. Ask my students if I make mistakes, and they won't hesitate to tell you that I do. I admit my mistakes, apologize when necessary, and then we move on. And I expect the same from them. Unfortunately, there is a growing trend in our world AGAINST ownership and accountability. Instead, we make excuses or just flat refuse to talk about it. This is not to say that all students are irresponsible and rude. I have many respectful kids in my classroom, and there are many more in our school. But the trend is not going in the way that I would hope. It's early in the year and I'm still getting a lot of "huh, what, yeah" and the like. And that isn't the worst of it.  It won't be this way at the end of the year, but it is hard to handle in the here and now.

So we say, regarding my third graders, "They're young, they just came back from summer break, they'll learn." But what about 14, 15, 16, year old young men and women who can't give an hour to the band leaders? Just one hour of their respect and attention? I'm not talking just playing around, I mean serious disrespect and misbehavior? Doesn't really seem fair to those who have given hours and hours and years upon years of their time to band, does it? We're all about "rights" and yet, my senior band member is defenseless as he watches his last chance for advancement be ruined by rude and unacceptable behavior. Where are HIS rights? Where are the rights of my students in the classroom who are trying to learn? It breaks my heart to see them struggle to tune out the disruptions and distractions.

No answers. Just an increasing number of questions as the days advance. More and more responsibility placed on the teacher, to the point that I fear the breaking point is near. More and more demands that I "hit the mark" with STAAR scores, and yet I can't even teach a 20 minute lesson because of the disruptions. And no one seems to be able to do anything about it.

Our senior band members will graduate and move on to bigger and better things. The hard work and hopes for advancement will be a distant memory. But it still hurts that what "might have been" is obscured by "how it is". And I, for one, feel that it could be different.

The Blog Post That Will Probably Get Me In Trouble

Couple of things before I let my heart flow onto this page. #1. I had a wonderful first day of school today. The kids are sweet, we have new energy flowing through our staff, and I know that I'm where I am supposed to be...for now. #2. I know without doubt that I am blessed. I enjoy things that many only dream of. I get this. But........

I still get really frustrated.

I'm called to teach. It wasn't a bolt of lightening calling, but rather a long, drawn out, tugging kind of calling. It started when I was young, but it was easy to ignore back then.  Even as I sat in pre-med classes for the first two years of college, something pulled at me. But here's the thing. Never once did I seriously entertain the thought of being a teacher. I could imagine myself working with children and families, but in a classroom? Never in a million years. So, after earning a BA in Psychology and a BA in Modern Languages, I decided to fore go graduate school for the time being and I landed in my first career of Child Development Specialist/Family Consultant. There. Doing the education thing without stepping foot in a classroom. And the story goes on from there--three different Early Childhood programs in my early years moving around Texas and doing life as Mrs. Briley-- then substitute teaching, late night talks with God and with myself, and a decision to enter the PACT program through LeTourneau University. I told myself that, even though I was earning a teaching certificate I wouldn't teach for long. I would take more classes and be a diagnostician or a counselor. Anything but teach a classroom full of elementary students. And yet...one more move, a mountain of student loans, and a smattering of employment applications all over Karnes County led to a phone call from a lady named JoAnn at Runge ISD. A midsummer visit to a quaint PK-12 campus in a town that you don't even have to blink to miss...and I was hooked. Love at first visit. Started my 10th year at RISD today, and it has been quite the ride. I've met people that I can't imagine being without in my life. I've taught entire families of siblings. I spent most of Meet the Teacher night this past week with a 7th grader and a 6th grader--brothers that just needed to talk for a while. They both came and got hugs today, as did several other "big" kids that have outgrown my third grade classroom, but not their teacher.

The frustration is not with my students. Many try me. Some succeed. I've had parents that I'm pretty sure couldn't stand me for a while...now we share hugs and long conversations in the grocery store. I think the root of my frustration is feeling that I've made a career, a life, of trying to make others feel valuable-- and somewhere along the way I became part of "the teachers". Nameless, faceless, even unidentifiable. I taught all day, worked on paperwork from 4-6, then sat through a three hour board meeting tonight. My main interest in the meeting was a salary discussion, and after waiting through a complete agenda rearrangement and a long recess, I sat and listened to talk of "the teachers". I'm grateful to the three board members who shook my hand, called me by name, and made eye contact during the evening. Bottom line--I just sometimes wish that I had a name and a face and an outlet for my story. I do what I do for the kids, but I have a family to take care of as well. Medical bills. A son about to graduate. I wear the same clothes over and over. I rarely get any type of vacation. My "raise" last year was entirely wiped out by increases in health insurance and other "perks". "The teachers" have stories. I'm just not sure that many people understand the sacrifice. I don't want praise, I want respect. I don't want to get rich. I want to be able to survive. I want to teach and guide children, without losing my identity and sacrificing my own family along the way. I want to answer my calling, without losing my voice. 

18

Today, my firstborn and only son, you turn 18 years old. You have pretty much made a life of beating the odds--so nothing really surprises me anymore. You've been proving doctors (and lots of other people) wrong your whole life. If someone said you couldn't, or shouldn't, or wouldn't...you have. As simple as that, you make your own rules. Always. And I love that. I've been criticized over the years for my parenting of you, especially when you were little. Maybe criticism is too strong a word, but at least "questioned". Here's the thing, boy of mine--parenting you is sort of like, well, coaching Manu Ginobili. As I was reflecting on this day, that analogy came to mind. I thought it was from a Gregg Popovich interview, but alas, these words are from one of your number one earthly heroes, Timmy D.

 “He puts his head down and he goes,and we pray for the best.” - Tim Duncan (referring to his teammate and friend, Ginobili)

Sometimes I almost have to close my eyes when you take off on one of your ideas or goals. It isn't that I don't have faith in you, but this world...oh, this world. I love you for respecting my protective instincts. As I tried to tell you recently when we were in the midst of a huge (for us) struggle, it's HARD. You'll see, someday. 

 A week from tomorrow you will start your last year of high school and embark on the next part of your journey. I suspect that we will continue to learn from you in the coming years--you are constantly teaching me about love, and life, and parenting, and the latest with Johnny Football. That won't change just because you are now old enough to vote and do all sorts of other things--I suspect I will learn as much or more from Conner the Man as I have from My Little Boy. Live fully, love fiercely, choose wisely, and study hard (especially when you get to A&M because, let me tell you, freshman chemistry is NO laughing matter). Don't be in a hurry this next year. I'm sure not. 

Happy Birthday. You are a joy, an inspiration, and an amazing son. 

Love, Mom 

For the Confused Among Us...Including Me

I decided to put a little summary of what has been going on with my sweet C here on my blog. When I started (trying) to blog, it was with the intent of keeping myself and our families up to date with our lives. And then, well, life sort of got in the way. I would love to say that, starting today, I will blog EVERY day. But Mama said, "Don't lie." Just for my own records and for those who want to know....

Caleigh was diagnosed with absence epilepsy at the end of her kindergarten year--age 6. After several years, a neurologist AND an epileptologist trying every medication available, the diagnosis was changed to absence epilepsy, medically intractable. In May of 2011 she had surgery at Texas Children's Hospital and received a vagal nerve stimulator. Seizure activity dropped to almost nothing, and we were even able to wean her off one (ugly) medication. Late 2012, noticed some seizure activity increasing, but only off and on. Fast forward to about a month ago--she started having severe headaches and increased seizure activity. We went to our friendly neurologist--he looked in her eyes and immediately got on the phone with a pedi ophthalmologist who saw us about 2 hours later. What they saw were swollen optic nerves and signs of increased pressure in her brain. She was scheduled for an MRI and spinal tap to confirm the diagnosis of pseudotumor cerebri. Yesterday we spent the entire day at Methodist Hospital and Methodist Plaza (thankfully linked by an underground tunnel) having and MRI, MRV, spinal tap (without anesthesia--my daughter is tough!), numerous lab tests, and a chest x-ray. The neurologist called me this morning and I had to smile. He was saying how "fortunate" we were that Dr. C (eyes) just happened to be in that day a couple of weeks ago and that he could work us in AND how "fortunate" we were that Dr. D (radiology) was at the hospital yesterday and that it could be worked out for him to do Caleigh's spinal tap. It's not fortune...it's blessing. And that little nurse angel, Irma, was instrumental in getting Dr. D to "be" available for us yesterday--but that's another story.

So this is where we are--the MRI/MRV were normal. The pressure they measured on the spinal tap was NOT normal. The diagnosis is pseudotumor cerebri. Caleigh is going to start a medication today that will work on lowering the pressure in her brain. We will follow up with the neurologist in 2 weeks. If the medication doesn't work, there are other things they can do--such as place a shunt in her brain to drain the fluid. We're going to pray that the medicine works...we expect that it will. She rested well last night, after an excruciating drive home--then had another episode of back/head pain a little while ago. As soon as I got her flat, she fell asleep. The doctor says this is due to small amounts of spinal fluid continuing to leak and a resulting lower than normal pressure. Hopefully after a few days things will get back to normal. Briley normal that is. :)  Thank you so much for the continued prayers. I know God has a reason for all of this.

Too Blessed to be Stressed?

A post that I borrowed from the Kerrville Church of Christ facebook page last Sunday has been resounding in my head all week long. I keep thinking of other platitudes--really that's what they are--that people use during hard times to make themselves or other feel better. The one on my mind today is "Too blessed to be stressed." If you know me well, you know that I have several situations in my life right now that are causing a great deal of stress. My innermost circle of friends and most of my family know the details of these situations--but most importantly God knows and is at work. I guess what I'm trying to say is that today was such a blessing...quiet, restful, soothing to my soul. But the stressful situations don't just go away. Lately, maybe more than ever before, I've been wishing for a magic wand or some ruby red slippers that could banish my pain or remove me from the situations that cause so much stress. Truth is, we have no such means of getting rid of stress. Blessings like a quiet Saturday help calm the storms of life, but we simply aren't promised a storm free existence. As I'm writing, I hear my son playing beautiful music on his guitar. I hear the happy sounds of Russell and Caleigh returning from their evening walk--sounds that remind me of the blessing of family. The washer is running, a reminder of that I am blessed with material things. There is an incredible lightening show in the distance--we will most likely be blessed with rain in the coming hours. So how do I focus on being blessed, when I am so stressed? I think it just comes down to being aware of the blessings poured out on me daily. Taking time to acknowledge each thing--each person--each moment. Showing adoration and gratitude to a God who cares for me. Knowing that even in times of great pain, confusion, and anxiety, He is with me. The sound of a gentle rain on my patio is the perfect reminder.

17 Years Ago Today

Dear Conner,

Today is your 17th birthday. I cannot believe that it has been 17 years since our family gathered at St. David's Hospital in Austin to welcome you to this world. Sorry it was at that location, but I did shield your baby eyes from the TU campus next door. You and I are so much alike that it's frightening--so you already know how much I love a good quote. One of my favorites is from Henry Ellis and it goes like this:

"All the art of living lies in a fine mingling of letting go and holding on."

 

A few days ago I watched you drive away in your truck with your Aggie sticker on the back window. You were only going back to work for the afternoon, but I felt something on a much bigger scale. You are getting so close to some big changes in your life that I can taste the tears already. The first thing you said this morning was "Good morning Mom. You're not crying are you?" You love to tease me about my difficulty with the "letting go" phase of life, but someday you'll understand. 

We've talked many times about your scary entrance into the world...but today all I can think of is your fighting spirit and joy for living every day since. I know that your life has held some challenges, and you're still dealing with some of them now. But even in the midst of trials, you can make me laugh--you can make EVERYONE laugh. Your sense of humor is one of your defining characteristics, your pain is not.

When I look back over the phases of your life thus far, it's hard to pick a favorite. When you were a baby, I loved every minute of being a new mommy. Your toddler years were, shall we say, busy. You approached every day full of energy and never slowed down. Your preschool years were fun too...we welcomed your baby sister and you loved your role as big brother.  It almost killed me was amazing watching you adjust to school in kindergarten and then take off with a love of learning that has followed you through your years in school. You excel at everything you put your heart and mind into, but you are so down to earth at the same time. I was touched a few weeks ago when one of your classmates came up to me in the grocery store. He was very upset because he heard you might transfer to another school. He said, "Mrs. Briley, our class needs him." I love that they see you that way, even though at times it is overwhelming to you. They even call you Dr. Phil--hilarious, and sort of daunting too.  

This could go on forever, but you're already rolling your eyes. So let's get on with the celebration. I love you and I while I'm holding on as tightly as I can...I am excited for the future. God has great plans for you...beyond anything we can imagine. 

Love,

Mom

Being Content With What You Have (or The Day My Daughter Taught ME a Lesson)

I only have a handful of readers and I think we're all Facebook friends, so I'm pretty sure you've heard the story. BUT-- just in case. I took my sweet 11 year old on a little shopping trip yesterday. She has been helping me do prep work for my classroom and we needed bulletin board border and a few other things. I told her ahead of time that she could pick out a few things for school while we were at a larger and nicer WM. I'm thinking a binder, some spiral notebooks, pens...she's thinking locker accessories.

 Now, if you do not have a middle school aged girl, you may be surprised to hear that accessorizing your locker is a big deal. A really. Big. Deal. In the blink of an eye, she gathered up an armful of school supplies...a bedazzled pencil holder, a zebra print mirror, a pink shag locker rug, and a white chandelier. After some discussion, we limited her locker accessories to the pencil holder and a mirror. She was fine with that and we enjoyed the rest of our afternoon, but I started thinking. "Where does she get that? Since when do kids need a chandelier in their locker? Who does she think she is?" And then I remembered this.

I have the most horrible case of bathroom envy ever. And this is only one of them. I am a bathtub crazed freak. And the chandelier...yeah, I love that too. We live in a home provided for us and it has three two presently working bathrooms. The plumber is on his way, but that's another story. Bottom line-- I'm not content. I look at pictures of bathrooms like my daughter looks at blingy locker accessories. Always have. I'm obsessed. When we had our little discussion and redirection time yesterday, she never once whined or complained. But guess what? I do. ALL the time. Earlier this summer I did some organization/cleaning in my kitchen...which led me to replace three small appliances (in the correct color)...which led me to adding a couple of new accessories...which has led me to loathe our countertops. You know, the old "painting one room" and how it leads to totally redecorating? I have inwardly (and sometimes outwardly) grumbled about things all summer. I have a roof over my head and enough bathrooms for 75% of my family to use all at the same time...but I want THAT bathroom. Being content. Not my strength.

I've tried to teach my children to be grateful. And I don't think I've failed completely. But my, oh my, do I have a lot to learn myself. By the way, I definitely think that bathroom above could use a splash of color. I think Caleigh needs to lend a hand!

Q&A...But Mostly Q

Note: This is just me tonight. Raw, largely unedited, me. It isn't a post where I necessarily count my blessings...though I do that every day. I'm not going to put scripture to my feelings...though I've spent an extensive amount of time doing that. I'm not feeling like Mary Sunshine, though sometimes occasionally rarely I do. I DO already know that God is good, so good. And I believe that part of His goodness is giving us outlets such as writing to express our inner selves...whether that be joyfulness or turbulence. So please just let me be me for a minute.

It's late and I can't sleep...so I write. This is not a new phenomenon. As a matter of fact, it's painfully old. But tonight is one of those nights when I'm dealing with a body that is aching and tired, and a mind that just won't quit. It's not just any ordinary summer night though, it's the "Night Before Oncology". Part of the story of "us". Part of the "new normal", whatever that is. I don't think I'll ever get used to it. When I think back over the past few years, or read our Caringbridge Journal or this blog, several things jump out at me. Where we were. How far we've come. How things have changed. How some things will never change.

 I've had the opportunity to speak on a couple of different occasions in the past year and to tell our story. I'm still surprised when I look out into the audience and see tears...and when people come up to me at a break or after the program and tell me how inspiring the story is, and that they could not do what I've done. (Yes you could, because you don't have a choice. There. I've always wanted to say that!) I have been so blessed by the words of the women I've spoken to. Then there's the other end of the spectrum...and no one has ever voiced this, but I sense it sometimes. I guess it's understandable that some would feel that we've weathered the storm and all is well. After all, Russell has been in remission, Caleigh had successful VNS surgery, and Conner manages his pain well the majority of the time. So it's over. Right? No. It's never over.

Please don't get me wrong. I don't sit around waiting for bad news or expect the worst. And when you get right down to it, any one of us is just one scan, one blood test, one phone call away from __________. (Enter your own life-changing event here) For us it was a triple dose of health issues. For others, well, you name it. All you have to do is watch the news. Or read blogs. I recently read a blog which included a list of prayer requests. There are A LOT of hurting people out there. A lot. I told myself early in Russell's fight with cancer that if I made it through that time, I would NOT fail to reach out to others in a similar situation. I think I have in some ways, though I still need to do more. I don't know what holds me back, but I suspect that it might be my lack of "answers". That could be interpreted a lot of different ways and I don't even know exactly where I'm going with this. But I know this--as I sit here tonight, the only thing I know for sure is that I have more questions than answers.

Some things I do know about going through serious illness/pain/etc.: Is it difficult? Yes. Has it destroyed us? No. Did it change us? More than you can imagine. Sometimes I don't even know who I am. Have I learned some things? Undoubtedly. And I hope that I can be a blessing to others along the way because I HAVE learned some things. Oh, have I learned some things. Will I ever, the night before an oncology visit, go to bed and fall peacefully and quickly to sleep? Probably not. Does this make me a bad person? I don't think so. Is there a finite moment where you can say, "This trial is over and God's work on me is done."? I'm doubting that one as well. I think as long as there is breath in us, we're subject to the Refiner's fire.There are some questions that I can't even articulate. I think sometimes about the woman whose husband had the exact same lymphoma diagnosis. Someone directed me to her blog as a resource and I was crushed to read that her husband passed away within days of his diagnosis, leaving her with a young child and an unborn baby. That definitely leaves a question...even if I can't put it into words.

And there are so many more questions--some that I refuse to linger on, some that are there all the time. But maybe a better place to end is with this, just this. I am not in control--and the one who IS in control, does not need my help. So maybe I should just try to rest.

I Love to Share Good News!

Today was a good day. If you have followed Caleigh's journey with epilepsy, you will know our joy. Quick (Conner is timing me!) recap if you're new to our story--Caleigh began having brief moments of being "out of it" when she was in kindergarten. An MRI ruled out tumors (Yea!) and an EEG confirmed multiple seizures (Boo!). Then they got worse.  After trying every medication available for her type of epilepsy, we were sent to an epileptologist at Texas Children's Hospital in Houston. He tried some meds again, and added some NOT commonly used for her condition. Nothing worked. By the winter of 2010-2011, she was seizing approximately every 90 seconds 24 hours a day. No bueno. We agreed to have her undergo vagal nerve stimulator implantation in May of last year, and the results have been stunning. She has essentially been seizure free for several months now. We were initially told that she would be tapered off medication IF the surgery went well, then we were told that she would be on them indefinitely. Last winter we were told that we could try tapering them off this summer. Today we saw our SA neurologist, who has agreed to taper her off ONE of her meds...the ugly one. He made me look him in the eye and say that I understood that it might not work, and that it could cause her to begin seizing again. But hey, this girl is amazing. We are going to give it a try. If all goes well, in 8 weeks she will be completely off the medicationwehate. Your continued prayers over the next 8 weeks would mean so much to us. Go Caleigh Go!

Dear TEA...

Dear TEA,

A big part of what you do for our children is ask them questions. You do this in the form of a standardized test. You do this to assess their learning, and to hold me, their teacher, accountable. Well, on this the weekend before my 4th graders will be assessed in regard to writing, I am taking this opportunity to ask YOU a few questions. I do this to assess your knowledge, and because I believe with all my heart that you should be held accountable as well.

Allow me to say that having studied diligently, having two children of my own, and having taught every grade level from pre-k to fourth grade, I know a little about child development. Do you realize, that by simultaneously increasing our class sizes and also making testing more rigorous, that you compound some issues that were never dealt with in the first place? Since we are moving, rapidly I might add, to the practice of using higher level thinking skills and assessing as such, let me put it this way--JUSTIFY for me, please, asking me to work with more students and fewer resources, and holding me to a higher level of accountability-- all while you try to decide exactly what it is that you are doing.

Have you stopped to think lately, ever, about who you are assessing in the great state of Texas? I mean really stopped to think about the faces and situations of those ID numbers? They are living, breathing, thinking, playing, and sometimes suffering individuals. Individuals. ASSESS for me please, and tell me how effective you think our accountability system really is when these children that you try so valiantly to uniformly assess, are anything but uniform. I am blessed to work in a district full of passionate teachers and administrators. We show up early, stay late, give so completely of ourselves that we are often depleted when we arrive home to care for our own families. I know I am not the only one who can't quit thinking about my students, even when I leave the building. I leave with the knowledge that I have done all that I can do for that day, and always wondering what life at home for them will hold that night.

Do you remember your days in the classroom? Think with me here. Before you landed in your current position, you were "one of us". We all know that we take an unspoken oath before stepping into the classroom. It's as individual as we are, but probably everyone's includes something about instilling a love of learning in our students. PREDICT for me, what you think might happen, if we continue to take the love out of learning. When fourth graders who have always loved school, delighted in their own creativity and talent in writing, and performed well in all areas are told that they are NOT GOOD ENOUGH because they can't produce a specific product with a timer ticking--the oath has been shattered. I know two fourth graders, different parts of the state, different districts, different teachers who have had their hearts broken this year.

I've asked you questions and made sure that they came from the two highest levels of Bloom's. Can you answer them? I know that I've oversimplified in many ways, and yet, I surmise that you're still struggling to answer these questions. I'm exhausted myself. I'm sick at heart for my students, my fellow teachers, my administrators. Like those two precious fourth graders, I'm beaten down from being told that I'm just not good enough. I'm not sure how much longer I can do this, but as long as I am in the classroom I will continue to give my all. When, at the end of the day, I ask myself if I truly did all I could do for the children entrusted to me by the state of Texas, I hope to answer affirmatively. Can you?

Sincerely,
A Teacher

Life in the Fast Lane (or SCRREEEEECH!)

I'm just not good at keeping up with this blog consistently--but then, you already knew that. Sometimes something happens that stirs my soul, and today was one of those days. It may or may not have had anything to do with my coffee intake this morning. You know, the fact that I was more keenly aware than usual of everything that happened in the doctor's office? ANYWAY. R had to see Dr. B just one month after our last appointment because he hit the magic 30 days post study drug completion. Doesn't mean much to your average person, but it's a part of our "new normal". The research nurse has a standard set of questions that go along with the drug trial that we have been participating in...the first of which is "How is your fatigue level?" R's standard response is, "About the same." Usually our nurse clicks the appropriate answer and moves on. Today she stopped. "Well, when do you think it might get better. You know, for the sake of letting the drug people know that it's resolved?" Excuse me? You want a date and time? "Well, let's just say that it DOES resolve over the next 5 months before we see you again. Could you write down the approximate time?" Um, okay. About this time, R gets THAT look on his face and proceeds to summarize our average week for her in an attempt to explain why we might be fatigued. Yes, us. Cancer, as well as life, is a family affair. Enter our oncologist, much respected and beloved. He listened to the conversation for a while, then delivered the most solemn message that I've heard come from him. I mean more serious, more heartfelt, than the day he told us it was stage 4 cancer.

In a nutshell, his message was this: If you don't slow down and find a way to get some regular down-time, you can expect your health to continue to suffer the consequences. Not only that, you're losing precious, irretrievable time with your children. You are headed down a destructive path.

Whoa. Haven't I been saying this? Well, apparently Dr. B's wife is something like yours truly--except that she's a well-known research physician and I'm not-- but we're both women who k-n-o-w. Know that whether you're an oncologist working 110 hours per week (yes, he does) or a prison chaplain/minister or a teacher or WHATEVER--you have to have time to breathe. He cited studies, he referenced the people of Europe and the Middle East, he even talked about the siesta, but he never smiled today. The man was as serious as I've ever seen him. Ever. And we've been through some serious moments together. He meant business. The man who told us that R's very serious diagnosis was no match for the prayers and support surrounding us, basically told him today that it's up to us now. There was more, but that's the main message. So what do you do? Not everything that he suggested today is plausible for us, but something has to be done. If things happen as they should, there will be changes in the coming days, weeks, months for our family. Some people may disagree, may not like them at all--may not understand. But in the end, hopefully they will be for good. As we had pointed out to us today, you can't undo the damage of fatigue and stress, you can only prevent more from happening. You can't get back time with your spouse or children, but you can start today making the most of every day. R just thought those multiple pills a day were tough to swallow.

Fully Trusting

I was talking to Michelle last night (before I ordered her phone OFF!) and discussing the roller coaster ride that is our life right now. We talked about how amazing it was that Milissa came off the ventilator, and how she physically looks better today. Then Michelle mentioned that the doctor took her (and my parents) aside last night and discussed the situation. She mentioned possibly having to intubate Milissa again and how close they came to having to completely paralyze her on Tuesday...and that it isn't out of the picture. I know the conversation was necessary to keep them informed and thinking realistically, and I know that the doctor sees things from a different perspective than we do. That being said, I just wish we could level off for awhile. If I never see the words "Call me as soon as you get this" on a text again, it will be a good thing. Hate those words. When I think about the sheer number of people praying for my sweet sister and for our family, when I think about how God has answered those prayers one by one, my heart overflows. Why do I want Him to do things differently? He is capable of totally healing her in one fell swoop, so to speak, but He is choosing to bring her two steps forward, one step back. I need to be okay with that. I need to be fully trusting. Why is this so difficult for me?

Transitions

I sat at the bedside this evening of a dear sister in Christ. After suffering from the complications of diabetes for many years, her body is tired. She has made the decision to end dialysis treatment and is living what will be her final days at home, surrounded by a host of loving family members and friends. As I sat with her tonight, at times her eyes were hazy. Other times they were bright and clear. Perhaps the most poignant moment was when she looked straight into my eyes with her beautiful, knowing blue eyes and quoted, "In My Father’s house are many mansions; if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again and receive you to Myself; that where I am, there you may be also." I thought about these words as I watched her loving husband of almost 62 years look into her eyes as if she were a young bride...his young bride. I watched her daughter and grandchildren comfort her, one of her precious great grandchildren adoringly lean over the bed railing and tell her he loved her. I started thinking about transitions--from infancy to childhood, to teen years, young adult, middle age, old age--and about how difficult some of life's transitions can be for us. Single to married, childless to a family, full house to empty nest...and then the ultimate transition. How difficult it can be for us to let go of our loved ones...and yet that final transition is the one we are preparing for from birth. Our Father's house. At one point during our visit, my sweet friend said, "I'm going home. I'd like to wait for all of you, but..." As her words trailed off I felt the conflicting emotions of holding on and letting go. "Yes! Wait, I don't want to see your family go through the pain of saying goodbye. I want to see your smile at church and our famous Christmas party and talk about recipes." That, and in the same breath..."No! Go, leave the struggles of this life and be free from pain." As I was struggling for words, she suddenly brightened and said, "Sing to me. About heaven." We did. She then asked for a prayer. Before we left, a kiss and an I love you...because that IS this sweet lady's standard greeting and goodbye. We'll all be there, to make this transition as easy as possible for her and especially for her family. And then some day she'll be there on the welcoming committee. The one with the beautiful smile and the twinkling eyes.

A Few Things

Shame on me for not updating my blog since that last post about the change in dates. It isn't like I haven't had a LOT on my mind to share, but just like everyone else I have been knee-deep in life. Maybe even thigh-deep...coming close to my waist. As I write this, Caleigh is continuing to rest and recover in her own sweet time. I have a few observations to share (surprise!) now that we have reached this point, but first I need to say how blessed we are to have so many people who support us. The prayers, calls, texts, gifts, meals...we appreciated everything more than we can say. Help at school and help from neighbors to get all the details in place so that we could be gone and focus on Caleigh...we are so very thankful for this as well. I know at least one family who is probably facing vns surgery soon, and others may read this as well--so I want to share a few things for them, and for my own documentation purposes.

1. If given the option for an overnight stay, take it. We were given the option and did not choose to do so which I regret. It should have been encouraged, not just mentioned. Children with epilepsy, at least in Caleigh's case, need time to wake up. This is something that I will be sharing with her doctors.

2. Some numbers that "changed" during our experience. We were initially told that she would have the device activated in one week. At surgery we were told 2 weeks. We were initially told that it would take "a while" to see the full effect of the surgery. Now they say 6 months AT LEAST. I'm not implying that anyone misled us, but ask specific questions.

3. I watched the surgeon note to place her chest incision under the arm...and he didn't. We're okay with that, but I want to know why. We'll address this with the surgeon at follow up next month. Nothing can be done now, and he may have a perfectly good reason, but I need to know.

4. It isn't as "quick and easy" as you're led to believe. It's still at least two hours of surgery with general anesthesia and two incisions. The incisions are bigger than I thought, and she has had some significant pain.

These are just observations. Would we still go through with it if given a do-over? Yes, but I would like to be more prepared. I still stand by my previous advice to NOT read too much. I read more than I should have last summer, but I gave myself time to forget a lot of that. In looking for some post-op information last night, I happened across some stuff I shouldn't have.

All in all, things are good. She will try to go to school tomorrow...although I'm not sure she's really ready. She still is sleeping a lot. She hasn't take much pain medication at all, mostly at night (and this morning when I took off the bandages!) but she is uncomfortable. Our appointment for May 20th is sort of a big deal to me. While we won't see the full benefit of the surgery for quite some time, we will see how she tolerates the device being turned on. I'm nervous about that, though I will not let her know.

Thanks again for every single prayer. We are so thankful to be at this point!

Some Information--Including the Correct Date!

As I posted on fb, the date for Caleigh's VNS surgery has been changed to May 5th. This would be because her overwhelmed and slightly fatigued mother wasn't thinking last Monday. We scheduled the surgery for two days before her dance recital. Let's just say that she was less than pleased when we made the discovery. She has worked really hard since September learning these dances. Keep in mind, when you are having seizures every two minutes, learning/memorizing two fairly complicated jazz dances is not easy. Have I mentioned the girl is a master at compensating? Also, we have paid for two costumes and two pairs of jazz shoes. And if you haven't priced them lately, we could pay rent on a decent sized house for a month. Okay, not in today's economy, but the things are stinkin' expensive. So I called the surgeon's office--I found the number RIGHT under the statement "PLEASE DO NOT CANCEL YOUR CHILD'S SURGERY FOR ANY REASON ONCE WE HAVE SCHEDULED IT". Yeah, I know...although I wondered why they gave me the number if they didn't expect a call. She didn't yell at me or anything and we are on the list for 5/5/11. What a Cinco de Mayo celebration!


I know a lot of people have never heard of VNS and some would like to know more. So, I borrowed a picture and I'll use my own "Mom Speak" to try to tell you a little bit. Basically, VNS is a sort of pacemaker for the brain. This is NOT brain surgery, however. The vagus nerve conveniently passes by the carotid artery in the neck on it's path through the body. She will have an incision in her neck where the leads will be wrapped around the nerve, and one in her chest where the generator is placed. Her surgeon is actually "dance costume/prom dress/wedding dress" savvy and said for girls he likes to make the chest incision under the arm. Nice, huh? About a week after surgery the stimulator will be turned on and then for six weeks or so we will be beating a path to SA to visit with our neurologist there for programming. The stimulator will be set to do its thing every 30 seconds to 5 minutes, depending on her response. The vagus nerve acts as sort of a "natural electrode" and stimulates her brain to straighten up and is supposed to reduce the number of seizures. She will also have a magnet that she/us/school nurse etc. can use to "jumpstart" things if needed. It looks like a watch--it is worn on the wrist and is swiped across her generator in the chest as needed for an extra boost. The surgery is 1-2 hours long and requires general anesthesia. She will still be on her seizure meds indefinitely. Boo. I know. But it takes a while to see how she will do with VNS. She will be released from the hospital same day if all goes well, though because of past anesthesia stuff (she painted the inside of my car pink after her tonsillectomy), we will be staying in Houston that night. The surgeon thought it best that we stay in the area anyway since we don't live close by. You can read as much as you want by searching VNS. If you were so inclined, you would see quickly why I am limiting what I read. There is always something. I researched this quite a bit last summer, and we feel confident in the decision as I said before. But you can scare yourself silly. I'd rather pray without ceasing. So that's it! Thanks for reading--I am open to any questions. I've probably heard them before, but I don't mind.