Today Was A Wonderful Day

So, I'm sure you can see how long it's been since I've blogged... Considering the outdated bio on the right and the blog post from way back when down below. I'm not sure why I stopped blogging. I guess I just got caught up with life, which is actually a really good thing, in my case. But, today was a wonderful day. And I'm going to tell you why. Fifteen years ago today (earlier, like 9ish), my life was forever changed by just a few words. Inoperable. 3-6 months. Fifteen years ago today, I was diagnosed with an inoperable brain tumor and given 3-6 months to live. Possibly a year with chemo and radiation, but if there was to be any real quality of life henceforth, my parents were to take me home and make me comfortable and wait for the inevitable to happen. But everybody prayed. And they called other people and other people prayed. People I didn't know who didn't know me prayed and, fast forward to a year later, I was referred to a doctor who could possibly turn things around. I was given the referral by an unlikely hero. If you want to know more about the juicy details, just wait for the memoir, darling. It'll be here before you know it.
A year after my diagnosis, I was able to go to see a doctor in New York; a doctor who had seen my brain scans and said he believed it to be a different type of tumor, one which he could remove. At a cost. So, we went to New York, my parents and I with no real money to pay for the surgery. Maybe if he saw me in person, he wouldn't say the same thing. But he did. And, a miracle after many, a Missouri insurance company faxed a check to cover the surgery. So, we proceeded as scheduled. Before the surgery, the doctor made one thing clear: He could save my life, but the deficits caused by the tumor would remain. Deficits like my left arm, which was paralyzed and curled up at my side, my left leg, also paralyzed, but functioning to a certain degree. At that time I was sleeping 14 hours a day and went into the hospital wheelchair bound. Those things would not change. But we went through with the surgery. It was a 4 hour surgery and the surgeon removed a golf ball sized tumor from a dime sized hole at my hairline.
I awoke the next day from the anesthesia and as doctors came in to assess me, they asked me baseline questions. "Can you lift your left arm?" I tried-the first time in a long time- and, somehow, I did. "Wait, what?" I'm sure they said. "Try it again." So I did. "Lift your leg." So I did. Full on chaos. Doctors don't really know what to do when they see the impossible happen. I'd like to say I remember the feelings of that day, but I really don't. What i do know is that for the last fifteen years, I have been baffling doctors and defying the odds and it could not feel better. Then, I had 3-6 months. Today, I've had 15 years. Then, I wouldn't be able to accomplish anything. Today, I'm a 24 year old author of two published books with a third in production. Then, I had no hope, but today I have an everlasting hope. And the knowledge that with God, anything is possible.

Today, as I went to lunch with my little girls and my parents, I was focused on getting the girls' food and drinks in order and when I came back to the table, my mom was finishing telling the story of today to them. Their eyes were wide, absorbing what they'd just been told. They didn't say anything to me about it later, but after we got home from our celebratory dinner, my five year old came over to me and gave me a big hug and said, "Thank you." I said, "What for?" She replied, "For you." I have to admit, I was taken aback by the moment, not even fully registering for a few seconds. But, I'm pretty sure it wasn't me that the thank you was directed toward. It's an odd feeling, really. I always thought I wouldn't tell my children about it. Something about wanting them to see me as I am now, as I want to be seen, rather than seeing me as something else. But, I'm raising them to be extraoridinary. And part of that is allowing them to see certain parts of the world-the parts that are messy and sometimes sad and out of control. I'm raising them to see need and create solutions. I'm raising them to see loss and realize the importance of life. Which, I guess means that I'll be telling all of my children. And friends, and neighbors, and readers and whoever else will hear, because, dang it, today was my Diagnosis day!

A "Mama's" Take on Summer

Hey there, readers. Long time no read. So, I decided to finally put my say in on this whole "Summer home with the kids" thing... And I know there are quite a few blog posts out there circulating on this subject, but I just wanted to put a word in about my feeling on the whole thing. Some of you are trying to figure out your "plan" for the summer on what you're going to do with your kids now that they are home for the summer months. I've seen lots of them, organizing everything into neat little curricula to keep their absorbent minds learning, keep them entertained, whatever. And to you who can do that, I say, knock yourselves out. But for those of you reading this, here's my summer plan... Letting the children play. I know, I know, "That's crazy!" You say. "Your children deserve more effort, more fun!" Well, here's my reason.
I grew up the middle child of three kids... A sister 4 years older and a brother almost 7 years younger, and while, you would think my sister and I would play together and entertain each other, that thought would be wrong. My sister wanted nothing to do with me. She wanted to be grown up, and I was still a little kid. So, what was I to do? I played by myself. "Holy Lonely, Batman! Were you scarred for life?" Nope. Because I was left to my own devices to find boredom busters, I... wait for it... got an imagination. And because of this imagination, no matter where I was, I could create an adventure out of it. I wasn't raised with trips to Oceans of Fun or whatever fun things families do. I was raised with investigations in the backyard, explorations on the farm, and roller blading down the driveway. When we would go somewhere, whether just a restaurant or running an errand with mom and dad, it was a treat. And because I could create fun all by myself, it was an adventure.
So what does that mean now that I'm looking at the summer with my little ducklings? It means I'm going to let them play, with toys, outside, you name it. No "activity" for every day, though we'll probably do one sometimes. It's all up to them and what their minds can create. And we've already put it motion. We got to go out to eat last night-which, voila, is a treat for them. And when we go to church on Sunday and to eat at "gongzuo", BOOM. Treat again.
So, what are your summer plans? I'd love to hear what ideas you've come up with!

To the Man With the Beer at the Next Table

To the man with the beer at the next table, I first want to convey my sincere apology for the chaos that was going on at my table. As I'm sure you noticed, I have quite the brood going over here, with my 3 girls making messes and making noise. Their parents own this restaurant and I'm pretty sure the girls think that means they do too. Not the point.
Secondly, I want to say thank you for being so kind and considerate-even more than tolerant- when my youngest kept turning around to watch you in your booth. And thank you for smiling and making silly faces at her when she made silly faces at you. Thank you for understanding and playing along as she tried to hurl herself over the booth to get to your side. And when I got up to leave, collecting sippy cups and binkies, you smiled politely, appreciating the job I have and the work that it is; not pitying me or passive aggressively suggesting that I need to get these children under control. I would have said thank you then-I tried. But at that point all I could do was just smile like an idiot, not having the words at the moment to properly convey my gratitude. That in itself is a feat. You, sir, made me speechless. It's good to know that can happen.
After a sermon titled "Have You Spoken With Any Angels Lately?" this was such a nice ending to our Sunday lunch. I don't know if this man reads blogs or will ever see this thank you. Something tells me my stupid smile was probably enough for him. But moments like these are just worth remembering and a nice reminder of what our proper response to others should be. Whether it's a Nanny Mama with three rambunctious preschoolers or another scenario, let's take the time to be kind to others no matter the circumstances, making others' day with our simple acts, and going beyond just toleration of others to appreciation.

Sincerely, a very grateful Nanny Mama


P.S. Those of you reading this, if you haven't gotten my book What Goes On in My Teacher's Head yet, you should.

I'm writing tonight as I lay here, bored, and cannot help but feel guilty for not updating sooner. A lot is happening right now! For starters, I am just days away from the official release for my new book What Goes On in My Teacher's Head! It feels odd calling it new, since I wrote it when I was fifteen. It's only just now getting published. But you won't see me complaining! It's incredibly hard to get published. This industry is hard and, some could say, cutthroat. Not only that, but it is practically unheard of for someone's first novel to be published. First try. Fifteen. My heart is so light. I am so blessed. As part of the "tour" and leading up to the official release date, I was able to have a book signing-my very first- hosted by a small bookstore in a small town in Indiana. Again, this was my first book signing, and I was go from Missouri to Indiana. Unheard of. It was such an amazing experience! It was July 12, the day after my 22nd birthday. I had my mom there (unfortunately the rest of my family couldn't make it), and my grandparents and other members of my extended family, people from the town, which just happens to be where my mother grew up. We had a great turn out. I sold twelve books. I see you shaking your head (believe me-I do). Let me tell you, book signings are fickle things. When you're first starting out, you kind of have to learn the ropes, learn what to do, what not to do, how to sell as many as you can, meet new people. But no matter how many things other, more experienced people may tell you, there are just certain things you have to learn through experience. And a lot of times, there will be slow days; days where you sell one book. Or none. And you just sit there feeling awkward and dismayed. Every signing is different. Twelve books is a lot.
Anyway, this experience has already been so rewarding and such a dream come true. I've wanted to be a writer for as long as I can remember. And I've been a writer since I was 11 years old. Maybe not published, but a writer nonetheless. I can't wait to share more with you readers as I go along.
For those who want to know more about my book, here's what you need to know for now. My book is called What Goes On in My Teacher's Head. It tells the story of a young girl named Delis Kentworthy who has been without a family for seven years. When she finds herself in need of a place to stay, she finds solace with an unlikely ally; her very young, very single teacher Ms. Madison. As the two live together, they grow closer as a family, but face a harsh reality when members of the community find out about the arrangement. Will the two be able to stay together as a family and overcome the stigma of a judgmental town?

Look for What Goes On in My Teacher's Head in stores and online starting Tuesday, July 29.


That's all for now!
Ever yours, Dystoniac

Confessions of a Nanny Mama

I feel like a mom. On days like today there is nothing more truthful in my mind than the fact that I am a mom. I am the nanny of three beautiful little girls, two of which I have almost all the time. For these girls I am the support system. I am the care provider, love provider and confidante. I kiss their boo boos, I make their meals, I hold them when they cry and laugh when they laugh. I teach them their ABC's and to say "Yes ma'am". And it is days like today that I am fully aware of the struggle of mothers everywhere.
I take my girls to church with me (Yes, I have them on weekends), and like many mothers I have the task of keeping these three little girls, all under four years old, occupied and yet quiet. I keep them quiet so they can listen and so as not to disturb other people. I use the term "I am that mom" for things such as these, though I know I'm not actually a mother. So it is days like today when, during church, I am thinking to myself,
I am that mom who picks up her baby girl during worship, then puts her back down when she wants (repeat over and over).
I am that mom who lets her girls drink out of her water bottle because they like it better than their sippy cup.
I am that mom who takes her children out multiple times during the service because they need to go to the bathroom.
I am that mom who brings Cheerios in containers for her kids to eat since they did not get breakfast in the rush out the door.
I'm that mom who's learned not to care when others glance my way in a downward motion because my children are "inconveniencing" them.
And I am definitely that mom who turns into a giant monster Mama Bear when those downward looks are targeted toward my kids.
No one messes with my kids. Period. There, I said it. It's out there. Feel free to take to your twitter to say that I have offended someone once again. But there's a point to all of this, more so than just getting my feelings off my chest and alerting the world to my position. So stay with me.
Matthew 19 talks about Jesus's visit through Judea. Large crowds followed him and he healed them. He spoke to them about divorce until people brought little children to him to place hands on them and pray for them. The disciples disapproved and told Jesus they did. But he said these words that are so familiar to even those who aren't believers; "Let the little children come to me, and do not hinder them, for the Kingdom of Heaven belongs to such as these". When I bring my little children to church, I'm bringing them unto Him. So who cares what other people think. They have as much right to Jesus as I have, and no matter how restless they become during the service, or how disruptive, Jesus still has His hands on them and their lives. They are precious, not only in my eyes but in His, and when we determine to be more like Him, our eyes become more like His, and we begin to see others as precious, no matter how small. When we see through His eyes, we forget the petty, put down our predisposed view of "how I want my church to go" and see the big picture of what's important; sitting at Jesus's feet and letting Him lay hands on our lives. When we do that, all else will fall away.
So, the next time you see this little Nanny-Mama, remember to see like Jesus that though things are not in perfect order, they are still precious.

I was going to post about my book today, but this seemed to be much more pertinent. Hope it speaks to someone out there.

Until next time, Josslyn.

Valentine's Day

Hello, readers. I apologize for my recent (and not so recent) absence. I truly have gotten preoccupied in other things and seem to never write down my thoughts, or what's new. So, here it goes.

Tomorrow is the ever glorified, ever dreaded, February 14th. Valentine's day. For some reason Valentine's Day seems to always skip my thought process until the day is finally upon us. I look forward to other holidays, but this one always seems to escape me. I feel like I never truly see the big deal. For one thing, as many of us know too well, Valentine's Day is rigged. It's set up to hold high those who are in a relationship, and point out those who are not. The stigma that's been created and upheld is that, for women especially, to be complete and the best you can be, you must be in a relationship. You must have a man to call your own. And I'm sad to say I've fallen for that line. I still do. Every year a little part of me seems to wither up and die because I am not where I hoped I would be this year--happily in love. And a part of my self worth seems a bit betrayed knowing that no one-of the male species-cares enough for me to find me in any way appealing, or special.

But here's where things get tricky. Do you have to be in love to be happy? The answer, friends, is no. Because believe it or not, there is so much more to satisfy yourself in life than romance, and a boyfriend (or girlfriend for you gentlemen reading). As Christians, we have so much more to be happy about. We're redeemed, people! No more slummin' it. God has done the ultimate show of love for us and given us His most prized possession-His son. Oh, and He did this other nifty thing too and wrote us a love letter that has a whole lot more to say than "You're hot". It says "You're important to me", "I love you", "I want the best for you". I don't know about you, but for someone all knowing and all powerful to look at me and find worth and pleasure, that's a big freakin' deal. Romans 5:8 says "But God showed His love for us in that while we were still sinners, Christ died for us." I love it. While we were still sinners. Not when we got our act together or did the right things. God loves us in our darkest place, where we just want to hide in shame. As a parent you love your children when they're doing the right things and when they can't seem to do anything right. As a nanny, I love "my" kids when they're obedient and when they're having trying days. How much more does God love us? There is nothing we can do to make him walk away. If you're dating and things go awry, it's so easy to just say you're done. And in certain cases that may be the best decision. But God never quits on us. He will never break up with us and He will never decide that "He can do better".

Now, that being said, here is where I make my stand for all the single ladies. I am single. And there is a reason. Is it because no guy has ever expressed interest? Slightly true (Hey, having dystonia can be pretty intimidating). But it's also because God said I deserve the best. He gave me Jesus. He gave me salvation. And if I deserve the best, why should I waste my time on "okay"? I don't want an okay relationship, or a relationship for the sake of having one. I want the real deal. The one I'm supposed to have. The one that God wants me to have. God's a pretty good matchmaker. So I've decided to trust Him to put me where I need to be, and put my future husband where He needs to be when He sees fit.

So where does that leave you? If you're in a relationship, and you feel that's where you're supposed to be, good for you! I pray nothing but blessings for you. If you're feeling like a relationship will make you better, I hope I can encourage you and tell you that you are special and you are worth so much more than just adequate. For you, I pray that God will show you His love and that you can see yourself through His eyes. If you're not in a relationship, I hope you can spend this Valentine's Day knowing you are loved and cared for. All you single ladies out there, I hope you'll let the love of God fill your heart in a way that no man could. All you guys out there, I hope you're taking notes. Jesus set the bar pretty high as far as acts of love. I pray you'll strive to be more like Jesus and one day learn to love a woman the way Christ loves the church. And Future Husband, wherever you are, suit up, keep growing and I'll see you later.

Ever yours, Josslyn

Just a Little Something

Hey, guys! I know I haven't really posted anything in a while, but I had a few things to say today. First of all, thank you so much  to everyone who reads this. I'm really excited about the turn out that it's having. As most of you know, writing is what I absolutely love to do, and to be read by other people is a dream of mine.
      Just an update, I had my baclofen pump trial last month. I also had my second round of botox on the same day. The results of the trial didn't really turn out because they didn't give me a high enough injection. Basically, what happened was I had a lumbar puncture where they injected liquid baclofen, which is a parkinson's medication. Then I had to stay in the hospital for about 8 hours under observation to see how the baclofen would take effect. After a while, it was pretty evident that it wasn't really doing anything. So, my doctor figured out that they didn't do a high enough injection. I had to lay flat for the entire day. I was laid up for about a week after just because of the soreness from the injection. But I was able to have my botox, which was good. And I'm going to have another trial in May, which should be a lot more productive.
     To answer another question, yes, I do plan on publishing, hopefully. That's my dream, and hopefully it'll be a reality in the near future. Once I finish, I should be able to go forward with that, which is very exciting. What I'm calling on all of you to do...tell your friends, your family... Diaries of a Hidden Dystoniac, diariesofahiddendystoniac.blogspot.com. Thanks!

Ever yours,Dystoniac