“‘They think he has Down syndrome.’ The words washed over me. I was trying desperately to bring my medicated brain into reality. This couldn’t be real, right? This couldn’t happen to us, right? Just hours earlier, Caleb, our bonus baby, had arrived via c-section. Pregnant after 17 years, we were thrilled to begin another round of parenting, as his big sister headed off to college. The idea was a bit daunting at first, but we soon warmed up to ‘Parenting 2.0’ and waited impatiently for our baby boy to arrive.
Since I was 44 and considered advanced-maternal age, extra testing was recommended, including an amniocentesis. David and I discussed our options and decided that anything invasive was out-of-the-question, not wanting to take any chances. We went to our regular OB visits and also visited the ‘high risk’ doctors here in town. Our odds of having a child with Down syndrome were roughly 1:33, but as David said, ‘I’ll take those odds.’ Monthly ultrasounds picked up nothing atypical. We did find out the baby was a boy! Big sister was crushed, but Dad was thrilled. We settled in, happily decorating his room, and spreading the unusual late-life pregnancy news with our families and friends. It was going to be different, but we didn’t know exactly HOW different.
‘They think he has Down syndrome.’ I could finally focus on David’s face, and his words registering. In that moment, all I wanted was to run down the hall to the NICU, scoop my baby up, and run away. Away from all the seemingly bad news. I knew nothing about Down syndrome, aside from a few baggers at our grocery store. And I didn’t want to know any more than that. Down syndrome didn’t fit into the plan; the plan of sports and roughhousing and busyness that little boys bring. It wasn’t supposed to be like this. It wasn’t fair. The tests would prove he didn’t have it, I told myself. The geneticist came by later, with information and some resources. I wasn’t paying attention; anxious for him to leave. I didn’t want to hear anything he had to say.
The hours crawled by, filled with doctor visits for both Caleb and I. He ended up having to stay in the NICU most of the time. He was having trouble learning to eat properly. My mind tried to tell me it was because he was 4 weeks premature, but my heart told me differently. I began to remember in the recovery room, the nurses had tried to get him to eat, without much success. I couldn’t figure out why the newborn reflex of feeding was working. I’d forgotten this with all the commotion or had I just tucked that in the back of my brain? We began to notice the markers for Down syndrome, slight, but there. Small button nose, sandal-toe gap, upturned eyes. Could it be true?
‘You can go home now.’ The doctors were discharging me, but not Caleb.
I was heartbroken. How could I leave him? He was so little… he needed us by his side! Sadly, we packed my bags and headed home. But we didn’t stay there long. There was only one place I wanted to be, and it wasn’t at home, without my baby. Daily trips back and forth to the hospital brought tears, silent thoughts, and what-ifs? I tried to read the information we were given, but my mind tried to work out what our lives – all of our lives – were going to look like going forward. I felt as if a black cloud had surrounded us and was never leaving.
After what seemed like an eternity – in reality, just two days – Caleb was released too. Finally! We headed home, making the appropriate doctor and specialist appointments. He had failed his hearing test in one ear, and there were some concerns about a heart murmur. The stomach blows just kept coming. I felt like I was doing all I could to tread water each day. Later in the week, the cardiologist brought us even harder news. Dr. Joyce confirmed news about his heart murmurs. Caleb had two heart defects that might need surgery sooner than later, Atrial Septal Defect (ASD) and Ventral Septal Defect (VSD). I felt overwhelmed, but suddenly, in those moments, my resolve kicked in. Down syndrome took a backseat to this new challenge. We swore to do whatever we had to do to make sure Caleb would be healthy. We prepared our hearts and minds for the thought of surgery in the coming weeks. David was my rock as I sobbed on the way home, praying that our baby would be okay.
Thankfully, Caleb’s heart issues never needed surgery. In fact, his ASD repaired on its own when he was about seven. He’s still monitored for a VSD every other year, but he has no activity restrictions. He is as active as anyone in our house, participating in sports all throughout the year. During our COVID-time, we’ve discovered hiking as a family pastime and he is right there with us on two-hour hikes.
Coming face-to-face with the thought of losing our precious baby made my husband and I both realize regardless of any condition or challenge, Caleb needed us to focus on making each day the best we could. Since those early days, he’s taught us over and over again the power of positivity. His joy and his spirit shine out – not only to David and I, but to all who meet him. He’s taught us Down syndrome is nothing to be feared, but to be embraced. Different can be wonderful! His lessons about living in the moment and cherishing others – no matter what their abilities, backgrounds or colors – have taken root over these 13 years.
We still have much of the journey yet to live. Caleb is young, with a lot of potentials and a lot of life yet to live. We move forward, day by day, thankful for the gift of this precious bonus child, extra chromosome and all.”
This story was submitted to Love What Matters by Karen Prewitt. You can follow their journey on Instagram and Facebook. 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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