How it really all began.
Shame. Embarrassment. Guilt. Regret.
All the feelings I felt upon finding out I was pregnant at 17 years old, attending my Catholic high school. I was 17 years old. In a terrible, unhealthy relationship with an older boy from another school. My parents were shocked and displeased in my choice of a boyfriend, as was my twin brother. From the outside, I had it all going for me! A smart, pretty and popular blonde cheerleader. Nominated by my class Freshman and Sophomore years to Homecoming Court. Teachers loved me; I took honors and AP classes. I’m still not sure why I stayed in that unhealthy relationship, but I know it was all part of God’s plan.
For months, I denied to myself that I could be pregnant. That just could never happen to me. I was in CATHOLIC SCHOOL! I couldn’t be pregnant. It literally felt like my world and life was over. I wanted to go to California for college, or Chapel Hill.
I thought there was only one option – I could not have this baby.
Abortion. There was no one stopping me, no counseling to tell me there were other options or to talk to my parents about it first. By the Grace of God and some wonderful angels disguised as friends, my parents intervened – wrapping me up in their arms, assuring me they would love and support me through whatever decision I wanted to make.
I’ll never forget when God made it clear to my brain (it was already in my heart) that this baby was here to stay. My sister came home from college when she heard what was going on and we went shopping to Bath & Body works. When we got home, I could feel my sweet baby moving. I put my hand on my stomach. I had seen a picture of him on a screen. This was a BABY… She looked me in the eyes and promised me that it would be OKAY if I had this baby. Mom and Dad would help, she would help – we would get through this together. I cried, and she went to tell my parents.
A few days later and my mom had called her OB/GYN and scheduled me an appointment. My mom drove me there, supportive the whole time. She never ONCE made me feel bad or questioned my poor choices. I cannot thank her enough for how loving and supportive she was of me. I went in for the ultrasound to find out the gender and we were so excited to find out!
During the ultrasound, our excitement after we heard ‘It’s a boy!’ quickly turned to fear as the technician found something that didn’t look right on the ultrasound. After what seemed like forever, they finally told us what they suspected, and we’d have to see a specialist in a few days to find out more… how could this happen?!
There was something seriously wrong with my baby – who just a few weeks ago I didn’t want, then suddenly decided I couldn’t live without. My heart sunk. I was in immediate tears. I could barely breathe. The doctor tried to provide comforting words to me that these types of cysts often go away. However, I knew at that moment something was really wrong. I already had mother’s intuition. The emotions on my 17-year-old heart were literally too much for me to bear.
Our appointment finally arrived. Anxiety ridden, I sit on the table and we begin the ultrasound. My sweet mom and my DAD came to the appointment. (Guys, I’ve never seen my dad take off work for really anything. This shows you how amazing my parents are – truly gifts from God). The technician performs an ultrasound and then goes to get the doctor. Now, the first doctor began to use the ultrasound machine but soon called in his newest doctor from New York City, Dr. Courtney Stephenson, who specializes in cysts. It wasn’t looking good. More ultrasounds. Why have 3 people had this wand up my lady parts?! It was hurting, uncomfortable and I was sick with anxiety.
Finally, we receive a diagnosis that it is indeed a cyst, and it won’t be going away. My sweet baby was diagnosed with schizencephaly. Schizen – what?! The doctors start saying things like ‘incompatible with life,’ ‘failure to thrive’ and ‘2nd trimester termination.’ My dad stands up and has me and my boyfriend leave the room. Here we are again, my parents are taking the weight as much as they can off my shoulders to put it on theirs.
God is testing my decision. My heart.
I am basically told to not have this baby because he won’t have a decent quality of life. He will have Cerebral Palsy and likely have seizures. He would likely not survive with how much of his brain was missing.
How could this have happened to my baby? Is it because I didn’t want him? Because I didn’t take care of myself during the early stages of pregnancy? My doctors assured me there was nothing I could have done to have caused this as it happened very early on in pregnancy, before I would have ever known I was pregnant. Still, the guilt lay heavy on my heart. It hurts my heart and makes me physically sick to think there was EVER a time in my life I did not want him. The conversation of that day ended with me firmly stating we are having this baby, I have already chosen life once and I am not ever going back on that. We set up our next appointment for further tests.
Weeks of stress, anxiety, bed rest, and struggling to get through my senior year of high school pass. It was finally time for my baby to come. The doctors had prepared us that he may not come home with us. I was in the high-risk room with a special isolette my baby would be whisked to the moment he was born. The doctors still weren’t sure what was going to happen – would he breathe on his own? Would he have seizures? There were still so many unknowns. Would my baby survive? (little did I know at this time, it would not be the first time I ask myself this question.)
On January 21, 2005, at 10:43 p.m. Jason Tyler was born into this world. By nothing short of a miracle from God, he came out breathing. To say everyone was stunned would be an understatement. He was still taken back for more testing but nothing was unusual so he required NO extended hospitalization and we were able to go home with him after just a few days!
Just the beginning
While Jason was born relatively ‘healthy,’ he is missing nearly 50% of his brain due to his cyst. As a result of his cyst, Jason has Hemiplegic Cerebral Palsy. Therapy and doctors appointments are a way of life for us now. I wish I could say this was the end of our story, but it is just the beginning.
In June of 2005, Jason was 5 months old and I graduated high school. I got into college and was excited to continue to live with my parents and commute to school. My college friends were so amazing but particularly one who I immediately connected with through my business honors program. One night, that friend, named Christa, was fed up with my complaining about my boyfriend (Jason’s dad). She basically shook me and said, ‘YOU ARE BETTER THAN THIS. YOU DESERVE MORE.’ It was that night I decided enough was enough and I called it quits. Now, I was really scared. Here I am, 19 years old, with a kid – a special needs kid at that – and totally alone.
I was not much of a partier and didn’t like going out much. At the end of my sophomore year, my best friend from high school convinced me to go out to a friend’s house. That night, I met a guy who followed up with me a few days later. I did NOT want to go out with him, but my friend convinced me to just get dinner saying, ‘it’s not like you’re going to marry him!’. Boy, was she wrong! Little did I know, I would fall in love with this man. He took on dating a girl in college with a 2-year-old kid who clearly had some special needs. By the end of my junior year, were engaged to be married. Shortly after we got married, we were pregnant with our first child together and completed the step parent adoption process since Jason’s biological dad was completely out of the picture. Two years later, we had ANOTHER baby! Life was great!
Soon, things began to change. Jason was getting so sick and we didn’t know why. He developed sporadic vomiting episodes, but his doctors were unable to pinpoint the issue. It was an extremely frustrating and helpless time in our lives. Nothing in this world is worse than seeing your child like this, and having no explanation.
In March 2015, he was at his worst. He was still vomiting, but also developed phantom leg pain and was completely lethargic. Our pediatrician was stumped and could come up with no other explanation other than it must be neurological. We traveled back to UNC and his neurologist decided to admit him, as this was the fastest way for him to get an MRI and the help he needed.
After nearly a week in the PICU (Pediatric Intensive Care Unit), he was finally diagnosed with hydrocephalus and underwent an emergency shunt procedure. Porencephalic Cyst, Cerebral Palsy, and now Hydrocephalus? While we were relieved to have clarity, Jason’s relief was short-lived. Within weeks, we were back in the ER on a regular basis with the same symptoms as before. With the strain of travel to Chapel Hill, and with specialized resources now available through our local Levine Children’s Hospital, we transferred his care to local pediatric neurosurgeon Dr. Scott Wait.
I vividly remember driving to the hospital again one day with Jason in the front seat. We pulled up to the stoplight near his school, just a few minutes away from Levine Children’s Hospital at this point, and I look over as he starts rolling in and out of consciousness. I frantically grabbed my phone and dialed 911, but didn’t press ‘call’ because I knew I could get him there faster than an ambulance could get to me. That was his last shunt he would get.
Months more of sickness, unexplained seizures where I thought Jason was dying and finally our neurosurgeon figures it out. In April of 2016, we go in for a scheduled surgery to take his shunt out and see what is going on. Jason gets his first ‘ETV’ and we head to my parent’s beach house a few weeks later. Little did we know, he wouldn’t come home from the beach to make it back for his last week of 4th grade.
While at the beach, I go to check on Jason before bed… like I do every night. I find Jason – twitching and unresponsive. I try to run downstairs to find help but fall half way down, yelling at my dad to call 911. The first person he got on the phone began arguing with him and wouldn’t send an ambulance. Furious, he hangs up and calls back. An ambulance is finally on its way. My dad runs upstairs to help me carry Jason down. The fire truck arrived within minutes, but it took almost an hour for the ambulance to arrive. In tears, I hold Jason praying to God he doesn’t die.
By the time the ambulance arrives, he is somewhat more alert, so we decide to go ahead and travel to the Children’s Hospital in Charleston which is about 40 minutes away because they have a pediatric neurosurgery team that can perform surgery if necessary. The team there was able to stabilize him, and we head back home to Charlotte. He is somewhat back to normal so we spend the night at home and decide to wait until the morning to go see his neurosurgeon for a follow up appointment.
On our way to the appointment, Jason starts vomiting and I can feel the dread in my heart. I call my sister-in-law, who is the only family home right now, and drop my other two kids off with her on my way. After leaving her house, I called our surgeon and tell him we aren’t making it to the appointment – I am heading straight to the ED. He starts going in and out of consciousness again in the car. I speed as fast as I can – knowing, yet again, I can get him there before an ambulance. I meet our surgeon in the ED, and within an hour he has another emergency brain surgery – a repeat ETV.
This was June 1, 2016. To date, this is the day of Jason’s last brain surgery. That brain surgery took us from being sick nearly every day, ruining his quality of life, and never being able to commit to birthday parties or outings with friends — to a healthy life. We pray to God every day that this is his last brain surgery.”