“I’ll never forget the summer of 2019. After a week’s stay in Dallas, my sisters were racing to get us to the airport. Up and down the hills, faster and faster in my sister’s little red Jetta. ‘Oh wow, I feel car sick,’ I said as I rolled down the window. ‘Are you pregnant?’ she chuckled.
We weren’t trying for another, but weren’t preventing it either. Secretly, I knew deep down in my heart our home wasn’t complete. I think it’s a mom thing. You just know.
The morning sickness came on strong. Drug store pregnancy tests and a doctor’s visit confirmed it. Baby number four was coming. It all happened so fast. My mother-in-law’s cancer came back. My husband’s mentor abruptly left the firm. Our gardener was electrocuted while cutting a tree at a neighbor’s. Our house was hit with lightning and we lost power, internet, and cable for a week. I was bedridden from hyperemesis gravidarum (extreme morning sickness), unable to eat, move, or barely function for nearly 5 weeks.
My doctor had asked me to get the NIPT test, just to err on the side of caution. I’ve had three healthy boys already, but I was 35— so let’s make sure the baby is okay. I mustered the strength to go in and do the test, really just to find out the gender early. ‘When do I get the results?’ I asked. ‘Call us in 2 weeks,’ she said. ‘We won’t call you unless there is bad news.’
I’ll never forget the phone ring that Monday. ‘You have an 81 % chance of having a baby with Down syndrome… Oh, and it’s a girl.’ I literally stood up and fell down to the ground. I frantically called my husband, what seemed like a million times. He always answers me. I called my mom, hysterical. I told her to come over immediately. I did something I never did: I called Davids’s office and asked them to pull him from a meeting, and they did. He came home. It was like a dark cloud loomed above my head and then pressed hard on my chest, I couldn’t move.
So much happened between that phone call and birth. I grieved the baby I thought I was going to have. I grieved the baby I thought I wanted. I felt not fit for this. I already had my hands full with three, and now a special needs child. How would I manage? Friends came over and cried with me and sat with me and prayed with me. People from all over the world were praying. I got calls and messages and stories from so many, friends of friends, friends of the family.
I then got a message about a new prayer group at church. They asked if they could pray for me after church. I agreed and brought two of my friends with me. I can’t quite explain that prayer experience, except the 15 or so people around me, praying over me and baby girl, changed my life. I left there with a total sense of comfort and peace. We didn’t know at that point whether the Down syndrome was confirmed, but what I did know that day was God was in control and it was going to be okay.
As with my boys, Lily was a scheduled induction. The doctors and I scheduled it for 3/21, World Down syndrome Day. We thought that was pretty cool. It was my son’s last t-ball game of the season. After the game, David and the boys left on the boat with some friends, but that backache didn’t go away. I called my doctor, and he asked me to meet him at the hospital. ‘Really?’ Such denial. I packed the bags, called David home, showered, and dropped off the boys at my parents. We arrived at 4:15 p.m., and to my surprise, I was 7 cm dilated. By 5:51 p.m. on March 14, a week before her expected arrival, Lily Elizabeth, our little Lilyflower was here. She never wanted to be defined by Down syndrome, to begin with.
It was kind of nice not having visitors in the hospital. Not that we didn’t want them, they just weren’t allowed. There was a virus spreading, and we just figured it was a strange rule. By Monday, I was home and Lily came home from the NICU on Tuesday. Then the boys started spring break early due to the ‘virus’ and I soon found myself at home, with a newborn, a toddler, two virtual students, and David— who put his office in the nursery. Oh, and Lily was born with a hole in her heart, so we knew open-heart surgery was looming.
The only place we went for months was doctor’s appointments. Miami peaked with covid during that summer. So many doctor appointments, gloves, masks, obsessive cleaning, medications, shots. Our nanny finally came back to help us, with the approval of our medical team. They knew we needed some help. Some relief.
On July 8, Lily’s cardiologist admitted her to the children’s hospital. Despite her intake, she was not gaining weight, she was in heart failure, and she was racing against her heart that was running a marathon. July 16, my nanny called me at 6 in the morning. She had a fever. My heart stopped. Literally. What if I had covid? What if I infected the entire cardiac ICU? I grabbed my family and rushed them to the hospital, we all got tested. Five negatives. ‘I’m sorry, Mom, it’s too soon for you to see your baby. You need to test again in a few days.’ ‘What? My baby is inside, alone.’
A few days later, two of my boys tested positive. No symptoms but positive. I pumped every 3 hours and drove 34 minutes one way to the hospital to meet a nurse downstairs and deliver my milk they gave her through a tube, sometimes a bottle. I called every change of shift and spoke to every nurse that cared for her, almost 19 different ones. And finally after seven negative tests, on July 27, 12 days after being with my baby, the night before her open-heart surgery, I moved into that hospital room and left my husband and boys behind. My small group from church was meeting that night, and I zoomed in, and we prayed hard for my baby girl and her surgery. Peace again.
The surgery went as wonderfully as it could have. They told me it would be 14 days of recovery before we could go home. Well, we were home in 5 days. My girl, she’s a fighter and the strongest girl I know. Her heart is now perfect.
It was a hard year for our family. In between the doctor’s appointments, covid, and hospital stays, our friends really rallied. We never knew a love like that. We had three organized meal trains — weeks of meals that took the burden of grocery shopping and meal planning away. Baskets arrived at the doorstep, people sent activities for the boys to do, friends came to the hospital to walk outside with me, they even picked up and did my laundry. Others sat in our front yard for happy hours. Five people dropped off birthday cakes for my husband’s birthday, as it coincided with Lily’s surgery. I think the sweetness of community during that time will stay with us forever. That’s really what got us through.
Lily spent a month in a hospital bed. This caused physical delays. Her cognitive, communicative, social, and emotional state has excelled everyone’s expectations. She has to be the loveliest little flower I’ve ever seen. Her brothers adore her. She is the apple of her daddy’s eye. She is so well-behaved, so undeniably loved.
I think I was so afraid of the unknown, of how it would feel. I wish I could go back and fix how I felt when I got the diagnosis, but I think it was just part of the grieving process. She’s changed all of that fear. My eyes see beauty so differently. Beauty is in the eyes of the beholder, that’s true, but she has painted a new picture for us.
I used to be the most sensitive girl in the room. But Lily’s strength has strengthened me. Sometimes her head tilts in the stroller, or her tongue protrudes and a question is asked and sometimes someone makes a comment or a statement that can be offensive — but really I think my mission here is to educate. My head held high, I must educate and advocate with compassion. Everyone needs compassion. Her life is a gift. It’s one of those gifts you don’t think you need until you have it, and then you wonder how you’ve gotten this far without it. Thank you, God, for the gift that keeps on giving. This journey has been incredible, and we wouldn’t trade it for the world.”
This story was submitted to Love What Matters by Caroline Cardenas. You can follow their journey on Instagram. 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.
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