Disclaimer: This stories mentions possible loss and may be triggering for some.
“I met Joel in January 2016; I was entering my second semester as a freshman in college, and it was my first year being an official adult as I had just turned eighteen that May. I was enjoying my newfound freedom, and I remember feeling confident in what lie ahead of me. All of my classes were geared towards me getting my bachelor’s in nursing. I was going through school with my best friend from high school, and college life really was everything I had dreamed of.
When I met Joel I fell hard. He was my first ever boyfriend. We did all the cute couple things, like road trips out of the city for Valentine’s Day and spring break in Las Vegas. He even took me up the West Coast to the Redwood National Forest. We weren’t the perfect couple, but we were two young kids who thought they knew what life was about, and we were so in love with each other.
As much as I loved him, my family actually didn’t know we were dating. I didn’t think my parents would approve of the way he was choosing to live his life. While they had met him, they were under the impression Joel and I were ‘just friends.’ Which is why, in October of 2016, they were very shocked to find out I was pregnant. That year trying to live a double life caught up to me, and by the time I found out I was pregnant I had already hurt everyone I loved because of all the lies I had chosen to live.
With my mom’s arms wrapped around me, making me feel safe, through tears I told her I was pregnant. I cried and felt like I had let her and my dad down. I felt scared and unsure of what this meant for my future. My mom held me like a child and told me, ‘I still love you.’
As I began telling the rest of my family, I became more embarrassed. Not because they made me feel that way; in fact, all of my extended family came to my side and made sure I knew I was loved as I began this new journey. I was embarrassed because the double life I had been living was finally being exposed. Everyone sins, but I had committed a sin that couldn’t be hidden from others.
My belly would begin to grow and, in nine months, I would have a baby. And the most important people in my life didn’t even know the soon-to-be father of my baby. I was so lost in feeling ashamed and embarrassed, it impacted my ability to bond with Olivia during my pregnancy. I do remember Joel and my mom would talk and sing to my belly. I’m so grateful they did.
Like other couples who are thrown into the world of parenting so soon in a new relationship, we had struggles. We realized we hadn’t really gotten a chance to truly know each other. On top of this, Joel lost his job later in the year. We ended up moving in with my parents in May of 2017, as I was in my second trimester. Up until this point, my pregnancy was typical. I went to all of my checkups, had all my ultrasounds, and everything was normal.
When I was 30 weeks, I went in for a standard checkup and the doctor noted I had gained about fifteen pounds in two weeks. She checked my legs and saw I was swollen from retaining water. At the next appointment I had gained even more weight, and my blood pressure was insanely high. She sent me straight to the hospital to be admitted.
I was diagnosed with pre-eclampsia and was told if my blood pressure wasn’t stabilized, I could have a stroke which would cause Olivia to have a seizure in utero. I had never heard of pre-eclampsia and I remember feeling so numb to the news I could have a stroke. The only way to ‘cure’ pre-eclampsia was to have the baby.
I remained in the hospital until I was 34 weeks. After having an emergency growth scan, the doctors saw Olivia was underweight and had a dangerously low amount of amniotic fluid. I received a call from the neonatal ICU specialist who told me I had to be induced that day to give Olivia a fighting chance. Even then, we were told Olivia had a 50% chance of being stillborn.
I was in labor for 46 hours before I had an emergency C-section. Everything leading up to the C-section felt like a whirlwind. On June 25, 2017 Olivia beat the odds and was born weighing 4lbs and 3oz. She was immediately rushed into the nursery for observation. Right before she was taken, I got to kiss her forehead and I remember being in shock she was finally here.
Seven hours after she was born, she was brought into my room and I held her for the first time. It was an out-of-body experience, seeing and feeling her tiny body on my skin. I was heavily medicated due to my cesarean, but I vividly remember the first time I truly saw and held her.
Olivia did not have a typical development. She missed every single milestone, but we were told it was due to her prematurity. My life had changed so quickly, and I was having a hard time adjusting. When Olivia was around two months, I realized I was experiencing postpartum depression. I had my first panic attack while holding her at two in the morning. I had never experienced anything like it. I felt like I wanted to crawl out of my body. I was holding this precious baby in my arms, but my head was screaming for help.
Joel had found a six-week job, but it was out of state. Having a new baby we didn’t have too many options, so he did what he had to do to provide for our family and took the job. With him being gone I relied heavily on my mom’s help with Olivia. I was so depressed, the first six months of Olivia’s life are a black hole in my mind. If it weren’t for my mom, I’m not sure Olivia would have thrived during those months.
At seven months, Olivia began having what we thought were seizures. I remember the heartbreak I felt when I would see my sleeping baby suddenly awakened by her arms and legs flailing. I remember the fear I felt in the pit of my stomach when her eyes would roll into the back of her head. Yet we were told it was prematurity. She was still not eating solids, or even making the attempt, because she had such poor head control.
That was when we decided we needed to take her to a special needs doctor at our local children’s hospital. It was at this appointment when I realized there was something wrong with Olivia. This was when our search for answers began. During this time she began feeding, occupational, physical, and vision therapy. Her first birthday came and went, and she was still unable to crawl.
That same year we had our youngest daughter Caia, and that’s when we realized just how delayed Olivia was. It felt as though we were caring for two newborns. When we took Caia to her first doctor’s appointment, we had to get a stroller that could carry two car seats, because Olivia did not have the trunk support to hold herself up in a regular stroller. Most of her delays were physical. She was always a very bright child.
By thirteen months, Olivia was saying five words. By eighteen months, she had regressed and lost her ability to use words as a means of communication. I wish I would have known to take a video the last time she said ‘mama.’ We were told this was one of the main reasons the geneticist wanted to run an autism ID panel. On May 6th, 2019, just as we were getting ready for dinner, Joel and I received the phone call that changed our lives forever: ‘Olivia has a rare genetic disease, called Rett Syndrome.’
We were told Rett Syndrome was a neurodevelopmental disorder which would forever impact her ability to walk, talk, or have purposeful use of her hands. We were also told Rett Syndrome would greatly impede her lifespan. There is currently no cure for Rett Syndrome.
Joel and I were devastated. In our search for answers, we would have never imagined this was ours. In a matter of minutes, our whole world was flipped upside down. I remember questioning whether this was a punishment for the way Olivia had been brought into the world. It took Joel and I months to process, grieve, and accept this was our life.
One day, as I was cleaning, I walked into the living room to find Olivia’s baby sister climbing up on the couch. As I kept watching, I saw Caia had made all this effort so she could help Olivia take a sip from her bottle. I looked at my two daughters and my mind began to race with a million emotions. Why her? Why us? How do we keep going day after day, knowing Olivia is living with this horrible condition where she can’t even use her hands?
As I stood there, overcome by emotion, I saw how they looked at each other. Their stares turned into smiles, and suddenly they were belly laughing into each other. In this moment, God gave me eyes to see how blessed I actually was. He had given me a rare and momentous gift. He formed every part of Olivia in my womb and He wrote her story long before I had even chosen her name. He saw the world was in need of seeing Him through her, and He so graciously chose me, just a normal, everyday person, to be a part of her story.
The first time you fall in love. Watching fireworks light up a dark night. Your first heartbreak. The first time you feel waves crashing on your feet. Walking down the wedding aisle to the person you love. Holding your child for the very first time. Grieving a diagnosis. It’s in these moments we live. A diagnosis like Rett Syndrome interweaves itself in your family’s identity. It affects grandparents, aunts and uncles, cousins and friends. It affects all of those who love you, and your child.
Being Olivia’s mom brings a lot of uncertainties into my life. But one thing I know for certain is when I take my final breath, I will know without a shadow of a doubt I lived a life very few do. A life experiencing love unlike anything else. A life where I fulfilled my purpose. These last five years, our family has lived through things I never thought we would come back from. We are nowhere near perfect, and we are still grieving the life we thought we would have.
As I look back, I see I have scars I used to try to camouflage because they brought embarrassment and pain. I have chosen to no longer hide them because I know they are a representation of how far God has brought me. The beauty of life is everyday is a new opportunity to leave the past behind and choose to live in the present. Olivia is our daily reminder to choose life. You only get one shot, make it count.”
This story was submitted to Love What Matters by Naomi Carlisle of Phoenix, Arizona. You can follow their journey on Instagram and Facebook. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories about rare conditions:
‘My daughter came home from preschool different. She was biting herself. She stopped speaking, sleeping, playing with toys. I could no longer write it off.’ Mom receives Rett Syndrome diagnosis, told it’s ‘one of the most severe cases’
‘If we waited 2 more weeks, you would’ve been paralyzed from the neck down.’ I was in and out of consciousness. Death wasn’t the only thing on my mind.’: 15-year-old undergoes brain surgery after feeling dizzy, discovers rare chronic brain condition, Type 1 Chiari Malformation
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