“I remember the first pang of worry I got when I was pregnant with JJ. It was around 11 weeks and I had spent the entire morning staring at my inbox. I was waiting for the email with our early screening results that would tell me if I was having a boy or girl. When it finally came, it said, ‘Hello Kayla, we request that you schedule a phone consultation with one of our medical professionals in order to view your prenatal screen results.’ I thought, ‘Oh no.’ My mind started racing, ‘Why does a doctor need to consult with me on whether our baby is a boy or girl?’ That’s right, this test screened for medical issues too. ‘Oh no.’
My stomach dropped and landed somewhere nauseous. My hands started shaking on their own. I thought that only happened in movies. I clicked through the buttons to schedule a phone consult for later that morning. I called my husband Todd and told him something was wrong but we wouldn’t know what for another couple of hours. The doctor on the phone call was nice, but her voice sounded sad and a bit uncomfortable. ‘So… Congratulations you are having a boy, but your blood test results are showing that there is a 99% chance of your baby having Down syndrome. I’m so sorry.’
I don’t remember what I said back. After we hung up, I remember thinking ’99 is a lot of percents.’ Down syndrome was so out of left field. I was young, I was healthy, I barely knew a thing about Down syndrome. The rest of my pregnancy was the most confusing time I have ever experienced. I felt like I was holding my breath for the remaining 27 weeks. I googled constantly. I poured through online forums about the accuracy of the early screening results. I looked up pictures of babies with Down syndrome and tried to see my son in any of the tiny faces that came up and I couldn’t. I might have worried even more than I googled. I worried about our older son, Lucas. How was his life going to change? I worried about my relationship with my husband. Does having a child with Down Syndrome put a strain on a marriage? I worried about my baby. Was I going to be able to love him as much as I love Lucas? Was I going to be able to give this baby what he needed? I worried about things I had never thought of worrying about before. Was this baby going to look anything like us? Was I going to enjoy his childhood, or would I spend more time grieving his differences? I looked at families who had children with Down syndrome and their accounts on social media. They seemed really… happy? They loved their kids, of course. I knew I would love my baby but love itself didn’t answer the rest of my questions.
The pangs of worry came frequently over the next 6 months but I was holding onto a strong feeling through the uncertainty. That feeling was, ‘Once he’s here, you’re going to be able to breathe. Once you see him, all the worry will be gone.’ I repeated it over and over. ‘Once he’s here. Once he’s here.’ It was the lifeline I clung to as I rode the waves of emotions in me. That feeling had to have been from God because I certainly had nothing to base those words on by myself. They brought a peace I couldn’t conjure with any amount of research or time. My pregnancy passed neither quickly nor slowly. It was exhaustingly full of moments of joy, moments of grief, moments of blinding numbness, and weekly doctor’s appointments. In the end, I just wanted to have him here. I wanted to look at his face and see if what I had been telling myself for months was true after all.
My water broke at 4 in the morning. It woke me up. Todd made me oatmeal with too much brown sugar and we sat, deliriously excited and deliriously nervous, at the kitchen table waiting for my brother to come to stay with Lucas. I labored for about 4 hours with the chatter of my family and friends as a nice distraction from the contractions. We crowded way too many people into that delivery room but no one seemed to mind. I pushed for 45 minutes, screamed louder than I thought possible twice, and then there was JJ.
He was crying in a squeaky but strong voice. He was pink and he had dark hair and two arms that waved around, clearly not knowing their function yet. They placed his little body on my chest and he got quiet and still. It always amazes me how they know mom right away. He radiated sweetness and gentleness at just minutes old. He was perfect. I looked at him and I could breathe again. I looked at him and all the worry was gone.
JJ as a newborn continued to fill any room he was in with serene, concentrated love. I have never seen a baby captivate hearts with such ease. The first months of JJ’s life, Todd and I just stared at him and wondered how we got lucky enough to have this baby as ours. Lucas adapted to the role of an older brother with no problems and became the best friend, entertainer, protector, and helper that a 4-year old could be. He loved his brother immediately with a deep love that has changed him. One of the most surprising parts of the early days of JJ was how little we thought of Down syndrome at all. He was, first and foremost, just JJ, our baby. I thought the Down syndrome label would consume this little being, that he would be more Down syndrome’s son than mine. But like many things in this world, what I was afraid of was just something I didn’t understand. There is so much to love about JJ that has nothing to do with Down syndrome at all and there is so much to love about JJ that has everything to do with Down syndrome. I find myself genuinely cherishing every part of him, especially the parts I didn’t understand before.
JJ is strong and he has made me stronger. I’ve watched him battle heart failure, an aggressive virus turned pneumonia, breathing issues, eating issues, measles exposure, TB exposure, and two open-heart surgeries in a 3-month period. Through it all, he stayed the gentle, joyful, life-giving boy that he is.
I remember sitting in a squeaky rocking chair, staring at him through the metal bars of a hospital crib while he slept. I knew once he woke up he would take a second to reorient himself with the room, then his eyes would focus on me and he would erupt into a giant JJ smile. ‘How? How did I get you? Look at all you’re going through.’
For any other women holding their breath with a prenatal diagnosis, I’d love to answer a few questions for you:
How did Lucas’ life change? Lucas’ life is fuller and brighter with his baby brother in it. He is a fierce protector and an energetic cheerleader. He is becoming someone who sees past what others look like, who includes, who understands, who helps, because of JJ.
Does having a child with Down syndrome put a strain on a marriage? I can’t speak for every marriage, although one study did find that divorce rates are lower for families of children with Down syndrome, but the fears I had around my marriage changing for the worse were completely unfounded. Todd and I have grown even closer towards each other in loving JJ, and at the end of every medical issue we’ve faced with him, we find our relationship stronger.
Was I able to love JJ as much as I loved Lucas? Absolutely. It has never for one second been a chore or a strain to love this baby with all I have. Our family doesn’t just love JJ. We all adore him, we cherish him, we’re obsessed with him.
Am I able to give JJ what he needs? JJ has higher medical needs than Lucas had as a baby. We have more doctor’s appointments. We’ve had surgeries and recoveries. We’ve had medical equipment in our house. But when a mountain is in front of you as a mom you just put one foot in front of the other and you climb it. That doesn’t mean it isn’t hard, but when the question is, ‘Can I handle all of that?’ the answer is you absolutely can. It even becomes normal.
Does JJ look like us? He does. He looks like a spitting image of his dad sometimes, but there’s a lot of me in that face too. The features he has that are typical shared features among children with Down syndrome make me so proud now. The parts of him that make him who he is are beautiful. And we get to share little pieces of his beauty with other kids like him in bright almond-shaped eyes, a button nose, certain mannerisms, a sandal gap between his toes. It’s the best team uniform.
Am I enjoying his childhood, or spending more time grieving his differences? One of the many lessons JJ has taught me is to embrace what makes you different. JJ is living life to the fullest, exactly where he is. I admire JJ’s differences when I think about them at all and something tells me he is going to be too busy living and loving his life to worry about being the same as other people. We could all use a little more of that. JJ is a gift we never knew to ask for. I would choose him again and again.”
This story was submitted to Love What Matters by Kayla Bosteder from Seattle, WA. 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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