You Are More.

One of the worst days of my life was when Tyler was diagnosed with Schizencephaly.  I was 17 years old, pretending I understood life, but now I had a child with special needs to care for.  I sat next to my mother, Tyler in my arms, and listened to his neurologist talk about what he found on Tyler's MRI scans.  Schizencephaly.  I kept repeating in my head, Schi-zen-ce-phaly.  Over and over, trying to wrap my brain around this diagnosis.  Wait a second, he just said Tyler is missing half of his brain.  How is he alive?  What does this mean?  Will he always be this way?  Will he get worse?  Cerebral Palsy?  He will never walk or talk?  I had so many questions, but I couldn't speak.  I tried, but my throat was on fire.  I squeezed Tyler in my arms thinking he was going to die soon.  I left that office with no hope.  All his neurologist told me was worst case scenarios, and I took it straight to heart, thinking Tyler would be nothing.  A child who wouldn't speak, think, move, or know that I was even his mother.

Fast forward.

Here we are!  Living such a beautiful life full of hope, best case scenarios, and love.  I realize now that even if Tyler couldn't think or didn't know I was his mother, it wouldn't matter to me, because he's still my son and nothing in the world can change the love I have for him.  Absolutely nothing.  The issue was never the diagnosis, it was the fact that I was told my son would be nothing but a body with half a brain.  Ten years later, you see the complete opposite!  Tyler is much more than that.  His mind is beautiful and smart.  The body he was given may not work properly, but it certainly doesn't stop him from trying.  Maybe Tyler doesn't do everything the way the rest of us do, but he adapts to his surroundings and finds his own ways.  Almost everything I was told he wouldn't do or would have issues with have been wrong.

I remember walking into that Neurology office talking about new discoveries we've made with Tyler.  The time I realized Tyler had an attention span and was capable of memorizing was when his love for movies appeared. Chicken Little was something he watched often and he laughed at the exact appropriate times, every single time.  We noticed before the funny parts came, he would anticipate them with laughter and look to us for a reaction.  The day we shared this information is the day his doctor told me to accept Tyler for who he is, disability and all.  How it was okay he couldn't do these things, because Tyler was still special in his own way.  I'd be lying if I said his words didn't make feel a little broken, again.

I can't speak for everyone.  In all honesty, our Neurologist wasn't a bad guy and I believe he thought he was doing the right thing.  I was told to accept everything the way that it is, but something about that has never sit well with me.  We embrace Schizencephaly, but we don't accept it.  I embrace Tyler being fed through a g-tube, but I don't have to accept him living off formula for the rest of his life.  I embrace the fact that he may one day need seizure medication, but I didn't accept it the day his Neurologist wanted him to start taking these medications long before he showed any signs of seizure activity.  I embrace his immobility, but I don't accept letting him do nothing with his life because he can't use his body.  I often wonder about the outcome of doctor's changing their approaches while speaking to patients/parents.  How far would a little bit of hope take these parents and their children?

Schizencephaly is apart of this family and always will be, but I'll be damned if it's the only thing people see or talk about when Tyler enters a room.  Tyler, you are more!  Much more than anyone ever thought you would be.  You are more than this diagnosis!  On Schizencephaly Awareness Day, I celebrate YOU!  The mountains you climb, your milestones, your life, and your beautiful brain.  There's a lot I've questioned about this life, but you and your ability to shine has never been one of them.

"Pain is real. But so is hope."

Cerebral Palsy Awareness Day!

I won't lie and say I haven't imagined who Tyler could have been.  The other week, I sat and watched a dad and his son throw a football back and forth.  Man, was it a beautiful day!  Leaves were flying through the air, the wind was blowing softly, and it smelled amazing outside.  I closed my eyes, took a deep breath, and when my eyes opened, I saw Tyler and Ryan playing catch.  Ryan gestured for Tyler to "go long" and he started running away. When he caught the ball, he smiled.  On their way back in the house, Ryan rubbed his hand roughly through Tyler's hair and pulled him into his body for a side hug.  I blinked and was brought back to reality.  It made me a little sad, so I decided to go back inside and when I turned the corner to my living room, I saw Ryan laying down on the couch next to Tyler with their arms wrapped around each other.  Ever so softly, I listened to them coo back and forth at each other.  I know, cooing is something that babies do, but there is a soft sound that Tyler makes when he is happy and that's what it reminds me of.  Just like that, I didn't care who he could have been, but fell in love with who he is and the love that surrounds this house.

I post pictures of us smiling and write about our funny moments, but you miss the nights where we're in tears and on our knees begging for better days.  Tyler's body is slowly becoming deformed in a way and that will happen when you don't use it the way you're supposed to.  Today, I spent almost an hour changing positions to help him cough up junk that he can't get out naturally.  Ryan had to cuddle Tyler for an hour because tears were flowing down his face and he couldn't tell us why.  Today has been hard, which is normal, but these are the things people don't understand about CP.  It's more than not being able to walk or speak.  Also, I believe Zach Anner said it best when he said nothing is wrong with his body, but that CP is caused by brain damage.

Cerebral Palsy is ugly, but has brought a whole lot of beauty to our lives.  There's something special about waking up each day, devoting your life to helping someone through their own, in every way possible.  There's this connection that I can't honestly explain to most people.  When your only form of communication for years was through your eyes.  We have met incredible people through this journey.  Unfortunately, we've witnessed hate, but we've experienced more love than anything else.  Walking away from this life is not an option.  Without us, Tyler wouldn't be able to live the life he does, but without him, I would be dead inside.  Through the years, the two of us have kept each other balanced.  Tyler having CP has pushed me to the most uncomfortable and scary places I've ever been.  If it wasn't for all of this, I wouldn't be who I am, as cliche as that sounds.  His disability has prepared me for this life and has helped me be a better mother to all of my children.

Tyler has made us all more gentle, patient, accepting, and understanding.  I don't know who Tyler would have been if he was healthier and free of his disabilities, but I'll tell you what, in his ten years of life, he has taught us more than anyone else I've ever known, and I feel like that's because of his trials.  Tyler isn't an inspiration because he has Schizencephaly or Cerebral Palsy.  He inspires me because of the way he carries himself through it all and how real he is.  He has the ability to accept his completely crappy situation and keep going, keep learning, keep pushing himself.  Who knows, maybe he'll write a book one day!?  I believe in his abilities.  I believe in Tyler.

I've always believed in finding good in crappy circumstances.  That's how we survive over here.  Today is Cerebral Palsy Awareness Day and I want people to understand that Tyler is so much more than his disabilities.  They're apart of him, and there's no changing that, but he is smart, funny, a geek, loves anything to do with farts and poop, and most of all, he's a fighter.

"The future is worth it. All the pain. All the tears. The future is worth the fight." -Martian Manhunter

Be Patient With Me.

 The other day, someone close to me told me to write a letter to whoever or whatever I'm having an issue with, not holding anything back, and to keep it for myself.  Last night, I sat down to write and the words were flowing out of my head and through my fingers with no hesitation.  When I finished writing, I read it back to myself and felt a sense of relief.  I was relieved that I didn't post it out of whatever I was feeling at the time.  It allowed me to get all of my irrational feelings out, so I could think more clearly.

It brings me sheer joy to make people laugh.  If there's one thing I'm good at, it's turning an ugly situation into a lighter and funnier one.  No matter how hard it is or how scared we are, we still find joy in it all, because life in itself is beautiful and messy.  Although, the last half of this year has been trying.  Instead of finding joy like I use to do, I was living the "fake it til you make it" lifestyle.  To my surprise, many people have asked me why I stopped blogging, when I had only just begun.  I want to always be honest with anyone who decides to read my stuff, but I didn't know how to let the world into my darkness.  Life can't always be turned into some light, sarcastic, funny, piece of reading material.

Truth is, I'm exhausted.

There, I said it.  Not the kind of exhaustion that needs a good night's rest.  Although, I'd take one in a heartbeat!  My soul is tired.  I'm a mother of four, doing my absolute best to keep it all together to raise my big and busy family!  Some days are good, some days are bad, and most days, it's a miracle I have a bra on and everyone in the house has matching shoes.  There are some days we're so busy that Ryan and I will chug our cups of coffee.  Forever killing every taste bud on our tongues.  You're welcome, world.  We're the ones doing YOU a solid.

When you have a healthy child, you get all of these pamphlets, books, videos, classes (if requested), step by step milestones and things to expect.  With children like Tyler, it's non-existent.  It's all a guessing game and you'll see when you get there, type of thing.  I fight for all of my children, but man is the fight harder for him!  It has to be.  The fight is with doctors, therapy, insurance, school, child care, typical everyday things that you wouldn't even think about.  Everywhere we turn, we have to justify, defend him, speak for him, or we get walked on.  There's not a pamphlet that tells you how incredibly hard this journey is going to be.  How much joy and heartbreak you will feel all at once.

I have spent a great deal of my life tip toeing, walking on eggshells, timid, worried about hurting others or being hated.  A series of events unfolded these last few months that just broke me down to a point where I closed my eyes, flipped a switch, and when my eyes opened, I saw everything in a new light and I will no longer apologize for who I am or what I do any longer.

A lot of times, I don't brush my teeth until after I get home from dropping off my kids to school.  I have never liked unexpected company, but if you show up to my house, be prepared to wait a few minutes for me throw on a bra and pants, THEN understand that you are capable of seeing almost anything.  Dirty laundry, unswept floors, dirty dishes, toys literally everywhere, and even a naked two year old.  Evan decides when he wants to undress and I've just learned to accept that.  I go through phases where everything in my life is in order, but then I go through phases where absolutely nothing is organized or makes sense.  I am not a consistent person.  I will take out the trash and almost never put a new bag in.  Ryan says it's my superpower.  I may wear the same pants 2-3 times in a week before I wash them.  We are always late and please understand that we're aware of the time, we are the ones who are late, no need to point it out every time.  I have raked my leaves into the area behind my fence and then spaced them out to look like they were just there.

THIS IS WHO WE ARE!

I'm writing this for people to understand why I've been distant and why I haven't been myself.  Being myself wasn't working anymore.  We are going through some things and doing our best to lean on our faith and family to get us through.  Everyday things, new doctors for Tyler, possible surgery and lifestyle change, unpaid medical bills, getting a modified van, and just getting over these very difficult holiday's.  Not a single thing with Tyler is easy and I fully understand the struggle of this lonely road, now more than ever.

This isn't a new year resolution, but a step into a better version of myself.  Someone who refuses to take shit crap from anyone ever again.

"Smile, shine, and take it one day at a time."

The Day My Son Spoke

Thanksgiving has always been my favorite holiday for many reasons, but now it's my favorite because it's the first time Tyler said "I love you" to us. At the time, we were use to his Tobii Dynavox, because we had been working with it for a little while. I honestly wasn't expecting to hear those three words that evening. We were at a friend’s house; everyone was sitting in random spots having conversations, Tyler was in his chair observing, and I was a few feet away sitting on the couch. I made eye contact with Tyler and he gave me his sweet smile. Eventually, Tyler's eyes turned back to his communication device and as I was about to turn away, I heard "I love you...mom" and if it wasn't for the crowd of people, I probably would have been broken down in tears. I literally looked around me, in shock, wondering if anyone else heard. Was my mind playing tricks on me or was this real life? The smile on his face gave the clear answer. I try not to think about the things he can't do or say, because I feel them. The muscles in his arms feel a certain way when he is trying to hug me and his eyes look to me in a certain way when he needs me. For the rest of my life, I'll remember this day, and his smile. Even as I type this blog, I have tears in my eyes and my heart is racing. Three words is all it took to make me the happiest I've ever been.

With a child, like Tyler, you spend all your time wanting to connect, guessing, and finding ways to communicate. And while I could see his love for me in his eyes, hearing it meant the world to me and Ryan. I have always been my child's voice, but now he has his own. Every day we get to learn more about him, always seeing new sides to his personality. This video has been watched by me more times than I can count, because it never gets old, hearing his story, seeing his smile, and being reminded to not give up. The days go by slow and they're hard, but the years go by fast. I'll forever be grateful to Heartspring for making such an important video about Tyler. I don't often broadcast our trials, but before this video, I was in such a bad place. This video was, and still is, everything I needed, and I didn't even know it. When I first saw it, I remember getting into my car and sobbing. I sobbed because I didn't realize how far we had come, until it was put in front of my face. This video reminds me of where we started, and how grateful I am for this life, for Tyler's life, and how we fought to be here. This is a three minute and seventeen second look into the life of a nine year old boy who wakes up and fights every single day. A little boy who has more courage, strength, and hope than anyone could ever imagine. On Thanksgiving Day, this little boy really spoke to me, all on his own, without being asked. On January 27, Heartspring posted his video, showing the world who Tyler is and exactly what he has always been capable of achieving. Our journey is not over. We will continue to face more trials, but as we do, we will remember his triumphs in life, and from them, we will draw strength and courage.

"It will take much more than rainfall, than stormy skies. We are endurance." 
-Tyler Knott Gregson

Motherhood: the good, the bad, and the ugly.

I would like to sit here and tell you how I'm on top of life in all aspects, but this is what motherhood looks like some days.  I would like to tell you how my children eat healthy, gourmet, meals for breakfast, lunch, and dinner.  But, who are we kidding!?  Some days Most days, as long as they are clothed and fed, then I am succeeding in life.  Unless, you're my two year old, then clothes are a foreign object that you want nothing to do with.  So, the "clothed" statement doesn't apply to him.  You can never plan for the unexpected, like waking up late.  When my oldest son, Tyler, has a therapist coming over to our house, you have a few quick decisions to make.  Top priority decision, food.  Leftover pizza and one pop tart for each kid.  There were three pieces of pizza left, and three kids who needed food. If that's not a sign, I don't know what is! OR I can whip up some eggs, but the time it would take me to make them, I could be brushing Tyler's teeth, changing his diaper, throwing clean clothes on him, and finding my bra.  Pizza and pop tarts it is!  Kids are happy with their breakfast, and Tyler's ready.  Now, I need them to stay occupied during Tyler's therapy session.  That's where the laptop comes into play.  I know, I know, I planted my kids butts in front of a laptop to watch an un-educational show.  JUDGE ME!  Did it work?  I hoped.  Not as good as I thought.  Especially, the part when Evan wiped his poo on my leg.  People, I don't understand how when Evan, my two year old, is completely nude, he goes to the bathroom every single time by himself.  God forbid you put underpants on him, because he will go to the bathroom in those underpants EVERY. SINGLE. TIME.  You know what else you can't plan for?  A child who wakes up on the wrong side of the bed.  Example: Evan cries for pop tart, I give him pop tart, he cries again and says no. I put pop tart back on counter, then he cries for pop tart again. Evan starts eating and walks away happy.  By the way, this happened quite a few times today with my two year old.  When he pooped and I had to clean him up, when he wanted the entire bottle of germ-x, instead of the suggested one squirt.  Shame on me for handing him the pop tart wrong, this morning!  *slams head on wall*  Motherhood is hard freaking work, man.  If the best you can do is left over pizza and a pop tart, then good for you!  You're alive, they're alive, and you're surviving.  Tomorrow is a new day and hopefully a better one.  I'm making up for their breakfast by making them an awesome dinner, but I won't lie and say that I haven't taken the easier route, every single meal.  

First Time Walking!

Tyler walked such a long way in Wal-Mart!  Our journey to the toy aisle started out very slow, but once his muscles were warm, Ty's little legs began to move with more ease.  Walking is no easy task for him, but when he has a lot surrounding him, then he can focus on other things instead of his pain.  Boy, did I notice our surroundings, as well.  To the handful of people who stopped to encourage Ty on his walk, THANK YOU, for being so kind and giving him extra motivation.  To the sweet little girl who not only made her brother move out of Tyler's way, but who also let her brother know how she felt about him knocking a toy into Tyler's path, THANK YOU.  I saw the sweet smile you gave my son, and the "hi" you whispered to him when you were kneeling right in front of him.  To the mother whose son asked, "What's wrong with him?", THANK YOU, for answering him by saying, "Well, he has to have that machine to help him walk, just like other people have glasses to help them see. Nothing is wrong with him!".  To the couple who waited a couple minutes for us to cross an aisle, when they could have easily passed us, THANK YOU.  The smile on your faces was comforting to me.  The world is filled with so much hate and judgement, but people like you guys, make it a little easier to live in such a place.  Do people really deserve a pat on the back for treating my son like the human he is? No, because you would think something like that would come easily, but in today's world, those kind of people most definitely stand out. Today, a nine year old boy went to the store with his family to pick out a toy, and thankfully, the kind actions of the people around us were so loud, that he didn't notice anything else.  Today, we had a great trip to the store, and I'm looking forward to more of them.

By the way, Tyler made it from the entrance, all the way to the back of the store, to buy a new Avenger toy to add to his collection.  Welcome home, Vision! You will be loved and dragged every where we go from now on!

Father's Day 2016

Since I have had children, something I understand very clearly now, is how important the role of a dad is.  I did not quite understand how my father's lack of presence in my life and bad parenting affected me, until Ryan became a father.  Watching him love our children has given me back what I missed all of those years.  In my opinion, the small things are what count the most.  Every good morning hug, goodnight kiss, bed time story, surprise lunches at school, and quick facebook videos on lunch breaks, are what my babies remember.  Sure, they enjoy gifts, movie dates, etc., but when they tell me they miss him, they mention missing him before school (when his schedule changes), or how they are sad they didn't get their usual goodnight kiss (when he's at class), and things of that nature.  Ellie tells me all the time about the days he visited her this year at lunch and recess, and how much it meant to her.  To this day, she still asks for him to visit her at school again.

You don't have to be a biological father to be a dad.  As many of you know, Ryan stepped in to our lives when Tyler was three years old.  Everyone close to us was hesitant about it, but Ryan was strong from the very beginning. HE is Tyler's father, and no little paper is ever going to change that.  Tyler deserves to be loved, for exactly the way he is and Ryan was able to give him the love of a dad that he had gone without since birth.  The bond they have is something special.  I still look at them and remember the first time they met and how they had an instant connection.

When Ellie was born, Ryan cried.  I tell her often about how he fell in love with her on the day she was born.  The look in his eyes spoke volumes to me.  This man, this amazing man, is going to be the best dad there is, and I get to spend the rest of my life with him.  I will always remember the first "Princess Ball" he took Ellie to.  Tears were flowing down my face, because my daughter was going to a dance, with her dad.  She said it was one of the best days of her life.  I always wanted my father to take me to one of those dances, but you know what? It was so much better watching Ellie go to the dance instead. 

What makes me smile the most is knowing how great of a dad my kids will always have.  They will never know the pain of feeling abandoned, unworthy, or unloved.  Ryan is silly, loving, selfless, and the hardest worker I know.  Not a day goes by that he does not tell us he loves us.  Hearing the words "I love you" from someone who means so much to you, is one of the best feelings in the world to me.  I watch this man of mine bust his butt, in everything he does, every single day, and he says it is all for us.  To have a better life, a better future, to give us what we need, because we are his motivation and when we are happy, he is happy.  What he may not realize, is he gives us what we need already.  His love.  Because of this amazing man, I get to watch my children grow and learn, with a father who would do anything for them.  Their dad is teaching them some of the most important lessons about life.  You know, I always knew Ryan was capable of great things and he showed me from the very beginning with Tyler, how loving of a father he is.  This life is not always easy and we all have our bad days, but parenting, life, and trials, are all easier with him by our side.  

HAPPY FATHER'S DAY, Ryan! You are incredible. You never cease to amaze me. YOU are special, YOU are worth it. YOU are important. I cannot thank God enough for this life with you as my husband.  What makes me the most proud is how devoted of a father you are. I love you. 

"Daddy, you are as smart as Iron Man, as strong as Hulk, as amazing as Spider-Man, as mighty as Thor, you are my favorite superhero."