Celebrating One Year!

One year ago, at this very moment, we let a stranger take our child away for a surgery that would change his life - that would change our lives.

On June 10, 2013, at approximately 7:30 am, Graden's Chiari Decompression began. We were left feeling scared, nervous, and angry. I remember the walk back to our family. Phil and I had to stop in the hallway to take a breath (literally) and compose ourselves a bit before meeting them at our table in the waiting area. We were able to tell them that only our Grado would be excited about the "cool masks" and "cute nurses" he saw. We couldn't help but smile despite the situation.

I'm not sure I want to relive that day, or the days the followed, but you can read the details here and here. Or, you can check out my blog posts from last June, but I just don't know if it's the same as being there, living it, watching your child go through it... I'd like to think I have a "way with my words," but even I as reread my posts, I realized I couldn't possibly capture all the feelings... There's just so many flooding me even as I type this a year later.

Today, though, you can't tell. You would never know what Graden has gone through if I didn't tell you. Of course, you would see his awesome scar, but he doesn't mind that. He's got a few more rules he has to follow, but, again, he doesn't seem to care too much. He believes his brain is special, but we know all of him is...

I look back at our lives over the past few years and wonder how we made it. Then, I stop and think about our lives since Graden was born and smile knowing how far he (and our whole family) has come. He will be 7 years old in November, and I cannot believe it. It's not a "wow, time flies" kind of disbelief; it's a "holy shit, this kid has gone through something every single year he's been alive" kind of disbelief. And, as always, I never take for granted that it could be worse, but I won't say it could have been better, either... it made Grado exactly who he is today, and I am okay with that.

Since his surgery, though, I can honestly say this has been his best year of health! He made it through winter with barely a cold, which is quite miraculous in this family. He's been off his medication for months now, and there have been no signs of compulsive seizure activity (although, we do have a follow up in a few weeks), and he ended his first year of schooling as a successful Kindergartner.

I think it's safe to say this kid is tough. He's certainly my stinker and thoroughly loves keeping me on my toes, but who am I kidding? I would not have it any other way, because as soon as I consider the alternatives - being sick or having seizures, I remember that being ornery and driving me crazy is so much better.

So, today, in honor of his one year surgery anniversary, we celebrate Grado. We celebrate his strength, his determination, his sense of humor, and his heart. But most importantly, we celebrate his good health! Here's to one good year down and in the books! We love you, Grado!

  

The last day.

If you would have asked me last June if I would have thought that we would make it through the 2013-14 school year, I would have told you - without hesitation - "no way." 

But, we did. Successfully, I might add.

And, in four days, we will celebrate the year anniversary of Graden's surgery. I'll save those emotions and reflections for another post.

Today, though, on the last day of school, I look back in awe of how far Graden has come academically. He's always been social - a little rough and tough, but social, nonetheless. I reread my posts every now and then, but I vividly remember writing about how he struggled in school. He was zoning out, unable to control his seizure activity and side effects from medication. He was doing okay with his school work, but he was just short of falling behind grade level. And, I was so worried about trusting his care to someone else...

Now, he reads, writes, counts, works through math problems, uses the computer, communicates, and follows directions at or above grade level... he is ready for first grade, and I cannot explain the relief I feel while typing those words. His level of maturity (again, still a little rough and tough) has grown, and he is becoming so responsible, especially in regards to his health restrictions and his learning. This kid has been through so much, and his journey, despite being on calm waters right now, is not over. The best (and worst?) part of this year is that he has learned why his brain is special. And, he truly believes that it's his brain that makes him the way he is. Little does he know that it's actually his heart. 

Then, there's my Landen. My big-hearted, witty, independent, young man who continues to grow up and become wise beyond his years. Sure, he's still only 8 years old and has a lot to learn, but he has such a determination to accomplish so many goals. I love and admire that about him. 

This, too, has been a learning year for him. He's been so helpful and protective of his little brother, he's had serious discussions with Phil and me about budgets (stemming back from why we sold our old house), and he's worked hard to remain on the honor roll while being a dedicated athlete. Plus, he knows it makes me happy that he loves to read, write, and draw... his notes to me are some of the best gifts I receive.

Just last month, he watched me graduate and wrote me this: "to my osum mom. happy grajooading day." (I love that he spells phonetically!) He drew a picture of me in my cap and tassel and folded it up into a secret note. I realized right then that all my complaining about school and struggles with managing my time as a mom, student, and teacher was completely worth it for my boys to see that the hard work paid off. (Now, if I can just remind them to go to college right after high school...) 

My boys are my life. There's absolutely no doubt in my mind. I watch them turning into their dad (with a little bit of their mom's attitude), and I couldn't be more grateful. Seeing them love, laugh, work and play hard... it reminds me why I fell in love with my Pheel. 

So, today, they left me, happy as two, ornery little boys should be, to have fun on their last day as a kindergartner and second grader so they could come home as a first grader and third grader. And, at first I thought something was wrong with me, because I am not sad about this - about them growing up. But, then I realized that this was such an important year in their lives that I could not be sad. I have to be grateful. Happy. Proud. A little excited, even, because I cannot wait to see what they accomplish next year.

First, though, we will enjoy the summer!

The boys on their first day of school (2013).

The boys on their last day of school (2014).

A New Chapter: CSF

In 10 days, I will be hosting my first, public CSF Walk! 

On June 14th, on the campus of IPFW, we will walk one mile in support, honor, or memory of members of the Fort Wayne community who are struggling, or who have struggled, with Chiari, Syringomyelia, or any of the related cerebral, spinal disorders.

Last year, we held a Solo Walk in honor of Graden on July 5th. Since then, it has become a goal of mine to open a Fort Wayne CSF Chapter. After the unite@night walks in June, I will move forward with the chapter process.

I have met so many people with these same health issues. I've been reunited with old friends. I've made new friends. I've met kids younger than my Grado who have had this surgery, and I've met people much older yet to go through the surgery. 

It's all been an amazing experience. Sharing stories and resources and hearing words of thanks from families who thought they were alone has made it all worth it.

They are not alone. We are a community, and this is our new chapter.

Talk to your kids. A lot.

It's been a long time since I've blogged about anything other than my boys. I suppose this will post will eventually get to them, too, but I have been thinking about this article all morning and need to write about it.

I'm not sure where I want to start, and I don't have all the facts or answers, but let's take a minute to consider what happened.

Two little girls... 12 years old - not yet teenagers - stabbed their friend (almost) to death.

They plotted and planned. They're being charged - as adults.

Their lives forever changed because of a being the world doesn't even know to be real.

We've heard this before... "God made me do it." "The devil told me to..." And, now, this.

If you read the comments (which are ridiculous after any news article, really), you would see things like: "This is what you get when you take religion out of schools" or one of my favorites: "where were the parents?"

Really?

Okay, I am a parent that sure as hell wants to know where my kids are at every single waking moment of the day, but get real. It doesn't happen. Granted, mine are younger, so I watch them a bit more carefully, but they still say things and do things when I'm not around.

Just a few weeks ago, I found out my sweet son was chanting "Sexy Lexi" on the bus with some older boys to a little girl. I was devastated and didn't even know he knew what "sexy" meant yet! I wonder if someone asked, "Where are his parents?"

I am right here!

Still, I send them out the door to school or sports or wherever, hoping that I've poured a solid foundation for their decisions. That doesn't mean they are, or will ever be, perfect.

I'm not saying that the parents shouldn't carry some blame... maybe they should. I don't know. I don't know them or their daughters. I don't know if they should have even been allowed in the woods or on the internet learning about this thing.

I am saying, though, that it is absolutely unrealistic to expect parents to have the power to prevent their children from making bad choices. We've all made one as a child (and I mean under the age of 18 if we want to get technical), and we know damn well that (most of the time) our parents had little to do with it. I, for one, know my dad is not to blame for some of the idiotic things I did that he knew nothing about... And, we had a good relationship. We talked about everything - even if he didn't want to hear it. Granted, I never stabbed anyone and I made bad choices much older than when I was twelve, but I just don't think it's fair for the question to always be "Where were the parents?"

I know it's not as simple as I'm making it out to be... I know there are some people in this world who shouldn't be parents or who are parents that didn't want to be... I have opinions about them, too. We all do. But, it is entirely possible that the parents are just as upset about their daughters' actions as the parents whose daughter was stabbed. I realize I'm comparing apples to oranges for some of you, but just consider for a moment that your child is the one who did the stabbing. What the hell do you do now?

There is no right answer. And, I can guarantee you feel guilty with or without the help of the media or someone asking where you were.

In turn, what do you do if your child is the one who was stabbed? Easy. You want the other children punished. Now those parents are going to get hurt twice - for not stopping their child from doing something horrific and by watching their child be punished. But, it's not a competition. No one wins and everyone loses. And, in many cases what they lose are their kids...

So, how about Jesus? I'm not 100% sure, but I would guess and say bad things have been happening in schools and with kids for many years -- with or without religion and whether or not we hear about them in the news. Kids rebel. Try new things. Experiment. Again, with or without prayer, faith, or any type of religion. And, most certainly, with or without their parents' permission and knowledge.

Does knowing where the parents are and having religion in school help? Sure, but it doesn't keep everyone safe and make the world perfect.

So, what do we do? Parents, educators, any one involved with a child?

We talk.

A lot.

We have to let our kids know that these things they're reading about, experimenting with, and participating in are dangerous. Not just a "you'll poke your eye out" kind of dangerous, but a life-and-death dangerous. Even then, I don't know that it will be enough...

I had never heard of this creature, story, or game, but you can be sure I'm aware of it now. And, as horrible as it sounds, I will use this poor girl's experience to educate my own kids. Just like I will with many other stories of kids dying trying to race a train or suffocate themselves... all horrible, scary, dangerous things that I don't want my kids (or any kids!) to do, but I won't just let them figure it out on their own.

I will talk to them. A lot.

Never and Forever

For the first time since his surgery, Graden finally asked a question I did not want to answer.

"When is my scar going to be gone?"

I turned to look at Phil, who looked back at me with the same surprise I felt.

"It's not going to be gone, honey. It will be there forever. It's what makes your brain special, remember?"

"Oh yea." He waited a minute, nodded, and whispered "Okay."

He didn't seem to distraught by our answer, but I knew he was thinking about what forever actually meant. He was disappointed, and it hurt my heart.

We had been talking about sports with Landen. It's his busy season as we move from baseball to football, and Graden decided that he really wanted to play football, too. So, he asked, "When does little kid football start?" We didn't consider where he was going with his question, because we thought he understood that he wouldn't be playing.

We told him football would be starting after baseball just like soccer and other fall sports. So, he asked if he could get signed up, and I answered him, a bit too quickly, "no, no football because of your head." Thus, his question about the scar.

I hated to tell him "no way" and "never," but it's true. He will never play football.

There are a few things he may never do, and that's okay...

It sounds so silly to be upset that your child will never be able to play a sport, and, my love for football aside, it is upsetting to tell your child there are just some things they cannot do. Well, could he? Sure. But, he shouldn't.

We've talked several times about how his brain makes him special, and I've even blogged before about how Graden's health issues still allow him to be active and communicate... two things I am thankful for every single day. Literally. Everyday, I wake up and know I am lucky to have a son with so many health concerns that can physically move and use his words to tell me what's wrong. I never take those abilities for granted. Never.

Still, though, I always thought I would be the parent who would say, "Oh, sure! You can be anything you want. Do anything you want! Go wherever you want. Travel. Learn. Explore. Play. Make memories and gain experiences."

And, I do say all that, but it's been revised. Edited. Rewritten.

I have to protect my boys while encouraging them to learn, experience, stumble and get back up. But, I cannot allow them to do things that could make the difference between life and death.

The worst part of that is that I know, fully well, that anytime they leave my house, yes even at 6 and 8 years old, it could be their last time. Any day anything can happen. In fact, I've seen that a lot this past week in the lives of people around me...

Now, I don't think these awful thoughts every single time they leave or go play outside... that's no way to live. But, it has crossed my mind on more than on occasion, and I have to be realistic, which in my case is a mixture of optimism and pessimism. (Hope for the best; plan for the worst? Or something like that.) While we have so many great days, we've also lived through many terrible days, and I cannot put him (them) in situations that are harmful. Yes, I know I won't always be able to prevent those situations, but right now, I have some control, and, as their Momma, I need that control. So, never football. Forever.

But... It's just football, though. Right?

Yes, I know. And, again, I know it sounds silly. Here I am feeling bad about not allowing him to go play football when there are so many larger issues in his life. And, Graden, well, he will get over it. He's already moved on... and he does love basketball, so we will stick with that for awhile (although it can be pretty rough, too; you're watching the playoffs, right?).

My point today? I'm not entirely sure, but I know that it's hard to tell your kids they can't do something, I needed to get it off my chest, and I also know that never and forever are very strong, serious words... even for a grown-up.