‘Aren’t you going to tell me congratulations?’ She wanted me to cry, but she wasn’t going to break me.’: Mom becomes Down syndrome advocate, ‘This is HIS journey’

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“It all began on May 26, 2013. I was 35 weeks pregnant with my first child, a boy, when I started having what I now know to be contractions. I was certain it was false labor. After all, we still had 5 more weeks to go to reach full term. But they persisted. And they became increasingly more painful and were occurring in closer and closer intervals. The next thing I knew, I was headed to our local OB ER and was being told by a very kind nurse I needed to prepare for my baby’s early arrival.

I still remember what she said, ‘Dear, you are dilated 6 centimeters and you need to prepare for your baby’s birth tonight!’ I still remember my response, ‘Uhm, you better make it stop… I’m not delivering a baby 5 weeks early!’ With a gentle laugh, she explained she couldn’t and assured us we were at a hospital with an excellent NICU. This was the first of many surprises.

I labored throughout the night and on May 27, 2013, Memorial Day, at around 8:00 a.m., it was time. My regular OB called to check in on me. When she discovered I was in early labor, she had a hunch something was up. Even though she was out of the office for the Memorial Day holiday, she graciously insisted on heading up to the hospital and delivering our first-born son. He was born at 9:28 a.m. and we named him Everett. He weighed 6 pounds and 13 ounces, which is fairly large for a late preterm baby. We were instantly told he likely wouldn’t need a stay in the NICU. As they handed him to me, I gazed at how beautiful he was. He was absolutely perfect. He had a beautiful thick head of hair (which we later learned was light blonde, like mine), heart-shaped lips that were pursed, and the most precious little chubby cheeks I’d ever seen.

Courtesy of Cara Jacocks

But his eyes… I did notice something different about his eyes. Then a nurse asked me if I’d like for him to be wiped down. Of course I did! And then it got very quiet. Eerily quiet, with the exception of some hushed whispers in the corner. My doctor gently approached me and said, ‘Your baby has some characteristics of Down syndrome. I’m not entirely certain he has it but I’m ordering a karyotype for him today. I want you to get those results as soon as possible.’ I asked her about the early testing we opted for in which the results came back negative for Trisomy 21. ‘Sometimes those tests are wrong,’ she said. She also reminded me when we opted for early testing in her office, we told her the results wouldn’t matter. I nodded. I remembered. And it was the truth. Honestly, as we waited on the karyotype details, in my mind, all that mattered was the results.

My hospital stay was three nights, standard back then. It’s interesting because I delivered all three of my babies at the same hospital. My middle child and my youngest had vastly different experiences than my oldest, whose diagnosis of Trisomy 21 was confirmed about a week after he was born. No specialists were called in for them. There were no conversations about the things they would never be able to do as they grew up. There were no limits placed on their intellectual and physical development. But it seemed to me, that’s all anyone wanted to tell me about after Everett was born. Every specialist, many a nurse, and even a social worker I spoke with before being discharged – oddly, it seemed to be the preferred topic. I guess it wasn’t odd to them.

Courtesy of Cara Jacocks

Did you know when you have a baby diagnosed with Down syndrome after birth, at some hospitals, they won’t discharge you until you speak with a social worker? Apparently, having a baby with Down syndrome is so terrible, so difficult, and so traumatic, a trained specialist in mental health has to examine you before you can be discharged. At least that’s how I perceived it. The ironic thing is… I probably DID need to speak to a mental health professional. But not because of my baby. It was because of what people were saying about him, and how they were reacting to him. The looks. The hushed whispers. The ‘I’m sorries.’ The ‘downs’ label. The never-ending conversations about potential health issues and developmental limitations. I probably did need to talk some of that out, but not with a hospital social worker, 3 days after giving birth, while holding my precious newborn in my arms.

Courtesy of Cara Jacocks

I’ll never forget when she slowly sauntered into my room. At first glance, I thought it was another nurse or specialist, but after reading her badge and realizing what her title was, and predicting the conversation that was about to take place, a fire stoked within me. I was furious and I’d had enough. Enough of the negative talk, conversations setting the bar extremely low, bleak predictions about my baby’s future. I’d had it. And this social worker was definitely ready for another one of those conversations. I could see it all over her face and her demeanor. She approached me with a very heavy, downtrodden facial expression, and spoke with a soft, low tone as though she was attending someone’s funeral.

‘How are you doing?’ she said with a very sad tone (and a hint of forced empathy). I quickly changed the tone and said, ‘Well, I just had a baby so I’m doing well!’ Nope. Not what this sad social worker wanted. ‘I know,’ she said with the same downtrodden demeanor. ‘How is that going? How are you feeling about his diagnosis?’

I again tried to shift the tone, ‘Aren’t you going to tell me congratulations?’ It worked! Her face went from despair to disbelief. So I repeated the question, ‘Aren’t you going to say congratulations? I just had a baby… most people say congratulations when someone has a baby.’ I could then see the wheels in her head spinning and she finally uttered, ‘Oh yes, congratulations!’ It was short-lived. She transitioned right back into sorrow. ‘But how are you handling everything? His diagnosis. The Downs?’

She wanted me to cry. I know she did. It was so obvious patients two floors up could probably feel her need to commiserate, us both in tears, as I explained the horrors of being a mom to a ‘Downs baby.’ And it fueled me. You see, at this point, I was three days in and already learning one of the most important lessons related to parenting a child with special needs. He just seemed like a baby to me. I mean, he was my baby so he was obviously more than JUST a baby to me. He was my little diamond. A precious gem to be swaddled, rocked, fed, burped, and cared for just like any other newborn. I certainly wasn’t going to put on sackcloth and cover myself in ashes over that!

Courtesy of Cara Jacocks

I looked her right in the eyes and said word for word: ‘This isn’t my journey. This is Everett’s journey. God chose this pathway for him. And He chose me to be his mom. And we’re going to do the very best we can as his parents to walk by him, support him, and give him everything he needs to be the best version of himself as he walks this walk, just like any other parent. But ultimately… this is his journey.’

She nodded. She knew. She wasn’t going to break me. She signed my discharge papers and we were FREE AT LAST! Free to be at home with our new baby where we could surround ourselves with people that loved him, accepted him, and supported him. Those early days at home with a newborn were a whirlwind and surprisingly lonely at times. I couldn’t quite relate to other new moms as my experiences as a mom of a new baby with Down syndrome seemed vastly different. I immersed myself in researching all things related to DS and formed some unexpected friendships with many of Everett’s teachers, specialists, therapists, ECI caseworkers, and other parents in the Down syndrome community.

Courtesy of Cara Jacocks

Those early years can be tough to handle, as there are quite a few medical tests and procedures kiddos with DS have to endure. In Everett’s case, it was ENT stuff. Swallow studies, sleep studies, multiple rounds of ear tubes, and a tonsillectomy, to name a few. To this day, I am truly grateful for our tribe of loved ones, educators, and healthcare professionals who supported us through those bumpy early years.

Courtesy of Cara Jacocks

Everett is 7 now and he has two little brothers, Liam and Alec. The three musketeers! A lot of the medical issues he faced when he was younger seemed to have tapered off. At his 7-year checkup, his pediatrician remarked how BIG his ear canals had grown and it was like music to MY ear canals. Even his behavior has leveled off a lot! There seem to be fewer tantrums, elopement episodes, and flop and drops.

Courtesy of Cara Jacocks
Courtesy of Cara Jacocks

In those early days, I started a blog to connect with other new parents, offer them helpful information and tips as they raised their littles with an extra chromosome, and to offer them hope and inspiration. I noticed recently I blog less and less about Down syndrome. In those early days, DS was very foreground and everything else seemed background. It’s all I could talk, think, and write about. But as the years have passed and Ev has grown into being who he was meant to be, the opposite has occurred. Down syndrome now seems very background and everything else is foreground. LIFE is foreground. So I talk about it less and less. I write about it less and less. I even think about it… less and less.

Courtesy of Cara Jacocks

As it should be. After all, it’s not my journey. It’s Everett’s journey. And his story to tell. If you’re a new mom or dad to a beautiful baby blessed with an extra dose of everything in that third squiggly little copy of their 21st chromosome, first of all, I want to tell you… congratulations! Secondly, I know those early days and years are tough. I’ve been there. But hang in there, it gets better, I promise. As a tenured mom in the DS community once said to me shortly after Ev was born — welcome. Welcome to your child’s beautiful journey. You’re about to witness first-hand, a magnificent story unfold.”

Courtesy of Cara Jacocks

This story was submitted to Love What Matters by Cara Jacocks, Ph.D., from Fort Worth, TX. You can follow their journey on Instagram, Facebook, Twitter, and their blog. 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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