We were married for three years before having Tyler. We were young, in love, and wanted to start our family and live the normal, everyday life like everyone else. Little did we know the trip we were about to embark on.
Tyler is the light of our lives. He is now 9 years old and the most amazing kid ever. Every parent can tell you that their child is amazing, wonderful, perfect, etc. but we don't have to tell anyone because they see it the moment they come in contact with him.
When Tyler was 10 weeks old he was referred to Children's Hospital Cardiology for a heart murmur that his pediatrician heard. They ran a number of tests and determined it was innocent and we followed up every few months just to listen and make sure it was repairing itself. Then the ear infections started, seventeen by the time he was 15 months old. At 18 months Tyler had tubes and his adenoids taken out. Two weeks after he turned 2, he began having episodes of where he would shrug one shoulder. For three days he would be standing and the shoulder would go up. Then down. Then up and down and up and down. And then it would stop. On the third day, he stopped breathing.
He was rushed to Children's Hospital where we met our neurologist in the ER. By the next morning he was labled at "Epileptic." Medications were started and so was our journey that we call his life.
We were in and out of that hospital for years, and never once did that kid whine or complain. He was popping pills like candy, never once questioning. He was a ball of sunshine, smiling and happy and always ready for fun. He was poked, proded, cut open, and still at such a young age loved going to see what most people call their doctors - He called them his friends.
I ended up quitting my job so I could care for him fulltime. His dad got a better job so I could stay home and we could deal with this financially with no help. Afterall, he was the center of our universe and we would go to the moon for him.
He was discriminated against on more than one occasion. Pre schools in our small town would not take him fearing he would be too much of a liability. Kids would laugh and make fun of him when he had a seizure in the store - along with their parents who would stare and pull their kids away, afraid that his "shaky outbursts" would somehow be contagious. Even his "friends" from the park where we would play gave him a hard time for not coming to all the playgroups (Due to being hospitalized or having yet another appointment) And after they made fun of him or teased him, he was the kid who turned around and asked, "So do you want to go play Hide N Seek or play on the slide?"
Upon entering kindergarten, he was targeted for being the weird kid. He missed a lot of school. A little cold would land him in the hospital for a week. He was constantly taking medication. He shook. He made weird noises sometimes. He was an average student, who had a love for learning. He loved going to school and seeing these same friends who gave him such a hard time every single day. Once the kids found out some of his medical issues, they teased him even more...even asking when the doctors were going to cut his messed up brain out. Never once did he cry or get angry like most four year olds would. He was epileptic and no one knew why. He tried to explain and they wouldn't listen.
Looking at Tyler, you see your normal young boy. Blonde hair, green eyes, likes to play video games, and he loves to swim and ride his dirt bike. What you didn't see were the long nights, even weeks, in the hospital, the endless hours of driving all over the state getting him from one specialist to another. What you didn't see was the kid, struggling to be a kid and a patient and a son, and a friend to all.
When Tyler was 6, his baby brother was born and James was the light of Tyler's life. From the moment James was shown to him they were instant friends. Tyler taught James how to walk, how to talk, how to ride a bike, and how to annoy Mom. He is the best big brother ever, always kind and caring. Tyler was always the first one to help James if he fell down and scraped his knee. Tyler is James's biggest fan. They rarely fight or argue. And when Tyler and James got a baby sister, love was in the air. As I type this Tyler is carrying his 10 month old sister around making her laugh and playing with her. She adores him almost as much as we do.
Tyler has always been a great sleeper. Too good of a sleeper. I always questioned why he slept so much. When he was an infant I was told, "Be thankful you got a sleeper!" When he was a toddler I was told, "Be thankful he still takes long naps." When he got into school and was falling asleep in the middle of class and wouldn't wake up for literally 2 weeks I was told, "We don't know. It must be his medications." We spent years trying to perfect his medication cocktails. Add this, subtract this, cut the dose, increase the dose...it was never ending. Meanwhile, we struggled with keeping his seizures under control, with his GERD, keeping up with schoolwork, and wondering why he slept so much. It wasn't until several bouts of throwing up blood and another run to the ER did we find he had a very rare neurological disorder called Kleine Levin Syndrome. At the time he was diagnosed, there were less than 600 cases ever diagnosed in the world. Great! Another doctor to add to our schedule. KLS, also known as Sleeping Beauty Syndrome, is a form of Narcolepsy that causes sleeping episodes that can last over a month. And when I say he sleeps for a month, I mean sleep as in not wake up to eat or drink or even use the bathroom. This definitely put a crinkle in our life.
He slept through summer vacation. He slept through a lot of school. I would have to pick him up at school from his desk and carry him home with a pencil still in his hand. He would come home and sleep for a couple weeks and wake up, not knowing he just missed half a month of school. All he knew is he had a half a month of schoolwork and homework to make up. And again, he did it with a smile, no complaining. And again, the kids made fun of him.
Tyler is treated like any other neurotypical child. He has chores. He has things to get done. He doesn't get out of making his bed and doing homework. He also has appointments he must attend. He has commitments that he must follow through with. Tyler is in cub scouts. He started as a Tiger and has followed through to earn his Arrow of Light - The highest rank a cub scout can get. He will continue on into Boy Scouts where he is determined to earn his Eagle. Tyler is also a part of the Los Banos Tiger Trap Team. He has a full schedule on his plate and yet he still devotes his spare time to his family - especially his younger siblings. He is polite. He doesn't use foul language. He is nice to everyone...even if they aren't nice to him.
When Tyler went to the hospital for a Fundoplication, surgery to hopefully repair his GERD, he should have come home the next day. We were there a month due to complications. He was hooked up to pumps, IVs, an NG tube, a TPN....had a lumbar puncture, more tests, another surgery and again, never once did he sit and feel bad for himself. Instead he got up every morning and went to school in the hospital. He made friends with other patients. He participated in the Radiothon hosted by KISS Country. He was so sick, taking his barf bucket up to the lobby of the hospital to do an on-air interview about how wonderful the hospital was. He puked the entire time. What a trouper. A stay like this would have traumatized most kids. Not Tyler. Tyler looked at it as another place to make friends that had issues like him.
I know this is long and drawn out, but it doesn't even explain half of the things this kid goes through every day. He is the most sweetest, loving child ever. He loves life...his life...and wouldn't change it for anything. In fact, having all the hardships is part of what makes him who he is. He appreciates life and everything that comes with it. He knows that everyone is different and not everyone is perfect. He doesn't care if you look different or act different sometimes. He likes you for who you are, not what you are. He has hopes and dreams in life and wants to be a Radiologist when he grows up. He is a normal kid who loves NASCAR and Jimmie Johnson. He is smart and has to work twice as hard as everyone else, constantly playing catch up to keep up with his studies with no support from his school whatsoever. He is polite. He is a big brother like you've never seen. He loves to share and laugh and when you've met him, you will be his best friend for life. He just happens to have Epilepsy. And Kleine Levin Syndrome. And lots of pills to take everyday. And a myriad of little quirks that we're still working on. We love him and if you knew him, you would, too. Although he doesn't do dirty diapers so I better stop typing and attend to one. Thank you for reading about my super special kid!
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