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.