“The day I became Bella’s mom, I instantly became obsessed. I was her biggest fan and advocate. I stared at her tiny five-pound body for as long as I could and promised her the minute I held her in my arms, I’d do ANYTHING for her to get through this tough life, alive and safe, for as long as I could.
Bella is my first child, and she was born with Down syndrome. I remember it so vividly. It was a couple of days before Thanksgiving. She was my turkey baby. I was blessed with a very enjoyable pregnancy at 21-years old, very healthy and very happy. My entire pregnancy, I never knew she’d have Down syndrome. The pregnancy went great, and I really loved being pregnant with her. I had taken the AFP (which stands for alpha-feta-protein) for screening of most disorders or syndromes. My test came back showing everything was well and within the normal range and so did my ultrasounds. I was on Cloud 9! For me, my life felt complete, my heart was filled with love, and I remember feeling euphoria all around me. I was so excited to be a mom and see all my child would bring to this world. My hopes were high and so were my dreams for her; there was this special feeling I could feel deep down inside about her. That feeling lasted my entire pregnancy leading up to the day I had Bella. Then things when things went haywire.
When I go back to this moment in my life, I do admit, I have PTSD from it. Every single year, during the week of Thanksgiving, I feel this heavy burst of emotion. It was the crack of the crack, which is when it’s even earlier than the crack of dawn. The air outside was dewy, and I remember feeling nervous but mostly proud that my womanly body was working. My contractions started suddenly, like five-minutes apart, right off the bat, and the rest came even quicker. Through the labor pains, I was so confident and eager to give birth naturally to our daughter as I had planned. I laugh now because my plans failed miserably. I was so naive to believe I was in control…
At 4:35 a.m., Bella Mia was born via emergency c-section. I remember the frantic look in the nurse’s eyes when she said, ‘This baby needs to come out now.’ That paired along with the noises of the baby monitor going off, Bella was having a hard time inside. She was choking, and they had to get her out immediately. I froze and went into shock. I remember my nerves taking over and my body shaking uncontrollably, the way you tremble when you’re freezing cold. I was given a spinal tap, then taken away into a freezing, brightly lit operating room. My husband Alex was wearing a surgical jumpsuit and goggles. He came to stand beside me and comfort me while the delivery team worked quickly to save our baby girl. At the time, the only things I could move on my body were my eyeballs. I was awake, and I remember hearing Prince’s ‘Little Red Corvette’ playing in the background. It was such a bizarre feeling, like my soul hid from me. I just knew deep down inside something was not right.
As soon as the doctor observed our daughter, he informed my husband she had undergone respiratory distress from choking on meconium in the womb and that during their newborn inspection, they suspected from her physical characteristics she had Down syndrome. Alex said the news about his first-born child hit him like a punch in the gut. He recalls grabbing the doctor by his white coat and asking him, ‘What did you say?!’ He was absolutely stunned. It was the most shocking news he’d ever heard.
Meanwhile, I was in recovery trying to keep my eyes open. I remember being alone in a dimly lit space with sheets as walls. I was holding a cup of ice and relieved she was here. As traumatizing as my birth experience went, I was still full of excitement. It reminds me of that feeling you get when you get something for Christmas you really, really want and can’t wait to wake up and play with it over and over. The meds that made me numb were starting to wear off. I could slowly start to feel again. I was high as a kite, ecstatic, and ready to slip on my new mom robe. I’m not sure how much time had passed, but I do recall the moment I saw Alex walking towards me to share our baby’s update. Beyond his swollen eyes, I could sense something was wrong. He looked unsettled. I’ll never forget what he said, ‘The doctor says she has Down Syndrome.’
My heart became so heavy, it felt like it sank, and we just held hands and cried together. All a parent ever wants is for their baby to be born healthy. Everything I didn’t expect to happen, happened. And the happiest day of my life turned into what I thought was one of my worst. It sounds awful to say, but the feelings were so overwhelming. Crazy thoughts ran through my mind: will my daughter be OK? What will people say about her? Is she going to need surgery soon? I imagined all of the extra things she’d have to endure and the cruel world she’d face. It still makes me cry because it’s not fair. Why her? Why us? My heart sank. I never thought I’d be able to shake off those feelings.
Amongst the chaos and days filled with tears and fears, I began feeling God’s grace. In a moment of despair, it was the only good feeling I felt. I’d speak to her as if she could hear me, at least I knew if she couldn’t, God could. I really began to see signs and moments of clarity and tried so hard to shift my focus. I allowed myself to mourn the life I thought I was bringing in and also rejoice in the life I’d been given. Something inside my heart kept me going, I had so much hope for her regardless. The combination of adrenaline and my motherly instinct kept me powering through some pretty critical moments. I was laser-focused on doing all I could to help our baby Bella progress one day at a time.
For ten days, Bella had to be in the Neonatal Intensive Care Unit. During that time, they sent her blood sample to a lab for a ‘Chromosomal Karyotype’ to confirm the diagnosis. The test is able to analyze chromosomes. We all have 23 pairs of chromosomes. If there’s an extra chromosome in the 21st pair, the diagnosis confirms Down syndrome, also known as Trisomy 21. The extra chromosome changes the baby’s development and causes mental and physical challenges. Mother nor father is at fault, it happens approximately once out of seven hundred births.
When the results came back in, our friends and family pulled together, everyone was as shocked as could be, but they still acted normal and did things for us we’ll never forget. Simple things, like, saying congratulations, or bringing flowers and portions of their Thanksgiving dinner to us. Leaving the hospital was a very difficult scenario since our baby girl had to stay behind in the NICU. I got to see all of the other ladies of the maternity ward being wheeled out to their cars with flowers, balloons, and most importantly, their newborn baby. While I was the only one being wheeled out holding a flower vase instead of a baby. I cried the entire ride home and ignored the empty car seat behind me.
Digging through these memories and channeling the fear I once felt, I’m happy to know how much we’ve all grown and pulled through it. We’ve made progress and we’re still a family who’s figuring things out together. Especially in days like today, with a pandemic affecting our everyday life.
As the days passed, we became more aware she’d need a little extra attention, but what stood out to me the most was a little extra resilience in herself. As the months passed, she’d have a little extra charm, surprising us with baby signs and gestures she’d use to communicate with us. Eventually, her communication began to regress, she even stopped calling me ‘Mama.’ She’d play with the same toys, rock back and forth repeatedly, and make some really loud noises that didn’t make sense to us. After looking at these new behaviors, we realized she had Autism too.
As the years passed, she’s possessed a little extra innocence in life and a lot of extra enthusiasm, all because of a little extra chromosome! That’s our beautiful Bella! She’s taught us there is more to life than intelligence, beauty, and wealth. If I could give some advice to my younger self, it would be this: trust the journey, hold onto your faith, believe in yourself and in your daughter. Know you will get through this, and when you do, it will be for an even greater purpose. Take each appointment with stride. These are the places you’ll eventually meet some of your life long supporters and in turn, you will help other families like your own. Take care of yourself and know you’re the best advocate for your child.
Through every obstacle, we were always so stressed for Bella, and she shows us every single time how it gets done. She just goes with it, in her own way. We all prefer the paved road with clear signs and signals, but sometimes life leads you to a dirt road. You learn how to master the wheel on a very bumpy trek. And, of course, bumpy roads can be fun too! I’ve realized this experience of parenthood is a lot like living during a pandemic. Even though things are uncertain, and we don’t really know what we’re doing, as soon as we figure something out, we’re not surprised when another challenge arises, and we get up and try again to do the best we can. Every day the plan changes.
For now, it looks like we’ll be making the most out of it and turning our home into a classroom. Even if it is online distance learning, for now, Bella’s entering middle school. We’re bracing for our 7th grader full of hormones and attitude! Wish us luck! It’s an honor to share the story we thought would break us. It’s been a blessing to be Bella’s mama, and as I’m able to look back now, I realize it’s actually the story that reinforced us. Hang in there everyone. It’s a beautiful thought to imagine we’ve yet to live through our best days. We just don’t know it yet.”
This story was submitted to Love What Matters by Darlene Rodrigo of Ontario, CA. You can follow her journey on Instagram along with her daughter, Bella’s. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories like this:
‘She started with, ‘So the good news is…’ My heart sunk. When they took her away we were a mess.’: Baby with Down syndrome diagnosed with congenital heart failure, ‘She is a miracle’
‘I don’t know how to tell you.’ He looked fearfully at her twin. My body turned into a science experiment.’: Preemie twin diagnosed with Down syndrome, ‘We truly are the lucky few’
‘Today my little sister received her school yearbook. She was intentionally left out due to her differences in ability.’: Sister to student with Down syndrome advocates for inclusion, ‘There is no excuse’
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