Our Story
pre-jack
“Do you care if we have a baby girl or baby boy?” “Can you imagine the little clothes?” These were the questions I asked Carter when we finally agreed to start trying to have a baby. My favorite response to my endless list of questions was “I hope we have a boy, our little boy, my boy.” I mean how do you not just melt.
On the afternoon before my husband left for Arizona to attend the Waste Management tournament with his friends, I could feel something was going on with my body. I felt really nauseas and couldn’t seem to find my appetite. I joked and asked him to stop by the pharmacy on his way home from the office. “Can you imagine?” I asked myself. As I helped him pack, we completely forgot to check the results of my pregnancy test. On my way to give him a kiss goodbye, I glanced at the test on our bathroom counter. “Positive.” No wait, “Positive!” I began laughing and couldn’t stop the tears from coming.
“Should I cancel and stay home?” Don’t be silly, off you go to your last golf tournament for a while,” I joked. As Carter left for his trip, he kissed me goodbye, and we promised to celebrate when he returned. “I really hope it’s a little boy” he said.
the first appointments
We waited anxiously for our first appointment with our beloved OBGYN (more on him later). “Eight weeks,” the nurse said when I asked when I could come in. We were so excited to have our first peek at our baby. Our OBGYN, Dr. Goff, joined us in our giddiness, even though he did plenty of these appointments each month. I appreciated the enthusiasm as this was our first pregnancy. Before we left our appointment he said, “you know, there are gender tests out there that tell you the baby’s gender pretty early and are quite accurate now.”
When we got home, we immediately ordered one of these new tests. A few weeks later, an email, “You’re having a..” appeared in my inbox while we were laying in bed. I immediately sat up and showed Carter. We stood up on our bed like crazy people and slowly opened the email together. The moment we saw the blue balloons appear on the screen we started jumping on our bed. Actually jumping! “A little boy!” Carter hugged me and we both cried. I looked at him and whispered, “Jack, our Jack.”
I’ve always heard that there can be quite a bit of disagreement when couples are trying to agree on what they will name their baby, but we were fortunate not to have that type of experience. Everything was so perfect. Jack would be his first name; it was the only little boy name I had picked out and Carter loved it too. William, his middle name, was so special to my husband. The name honored his best friend, Will, who passed away before Carter and I met. Jack William Green, it sounded so timeless when you put it all together. We already loved him so much.
At our second appointment with Dr. Goff, he mentioned that an anatomy scan was routine for pregnancies and that it would be our first real glimpse of our baby with the 3D ultrasounds and spending more time looking at him. We were so excited for this opportunity!
The Diagnosis
The diagnosis
The Anatomy Scan
The appointment took place in the same building but different floor of my regular OBGYN’s office. I arrived early and eagerly waited to be called back. The ultrasound technician was kind but I could tell she really wanted to focus on her work, so I limited the absurd number of questions I had. About 20 minutes into the appointment something felt wrong. At first I thought I was just being paranoid and annoyed with the lack of enthusiasm coming from the woman checking in on my baby. But then I noticed she was making notes on a piece of paper. “Neck,” she wrote down next to a number. What is going on, I thought, there is nothing wrong with his little neck. I smiled at her and asked “how’s everything looking?” She didn’t even look at me before she replied, “the doctor will be in shortly.” That’s when I knew something was wrong.
When the doctor came in, he shook my hand and said, “there’s a couple of things we need to talk about.” There was no hello, how are you, congratulations. This was not Dr. Goff. To be honest, I cannot fully recall our conversation. When I look back at this moment, all I can remember is a blur, words that don’t connect. Words like “Down Syndrome,” “hole in his heart,” “amniocentesis,” “options,” “I’m pretty sure,” and “we’ll know for sure in a few days.” Within 10 minutes, the doctor was gone, and I was alone in the room. A nurse came in a few minutes later to schedule a follow-up. I walked to the elevator in shock. How could one appointment turn my world upside down? How could a 10-minute conversation with a doctor I had never met before redefine my pregnancy?
When I got to my car, I lost it. I was so confused. This was my first baby, I was only 24 years old, healthy and overall considered myself a good person. Why was this happening? There had to be a mistake. Surely, this doctor was wrong. After a few minutes, I picked up the phone and called Carter. His chipper hello and “how was it, how is our baby”? destroyed my sense of composure. I proceeded to tell him everything that happened. When I arrived at our home, he was already there waiting for me. We held each other and cried. Sobbed. This was our baby, our sweet Jack. After a few hours we cheered each other up by reminding ourselves that we would be meeting with Dr. Goff the following week and that surely, he would have all the answers.
The diagnosis
The Follow-up with Dr. Goff
Our appointment could not come quick enough. This appointment was monumental. Although Dr. Goff had not seen the results or comments from the anatomy scan doctor himself, we quickly bombarded him with updates and questions. But to our surprise, he calmly looked at us and asked, “does Down Syndrome change anything in terms of your love for Jack?” We were confused, “of course not,” I said “he’s our baby.” “Then why does it matter? He is loved by his parents, he is wanted by his parents and if there are any health concerns, we will figure that out together.” I immediately started crying. He was SO right. I didn’t need to know anything else. I didn’t need the amniocentesis test, I didn’t need the opinion of a second doctor on the fourth floor. He was my baby boy, he was our baby boy, and nothing could change that. A few days later, our NIPT test was delivered via a 2-minute phone call from a less-than-energetic nurse. “We are 70% sure he will be born with Down Syndrome.” This was the last time we worried about those two words. Down Syndrome.
The diagnosis
Dreaming & Preparing
During the remainder of the pregnancy, Carter and I rejoiced and prepared, we dreamed and reminisced on who our Jack would become. Would he be the first professional golfer with Down Syndrome? We couldn’t wait to be his parents. We traveled, lounged and found comfort in his sweet little movements. I purchased any book I could find, read countless blogs, Instagram posts, and advice I could locate about children with Down Syndrome. 70% was pretty high, and regardless of the outcome I wanted to be ready. By the time I was 8 months pregnant, I called Carter to my desk and asked him to sit down. “Here,” I said, “this is our plan for Jack.” I could tell he was confused, so I continued. “There’s a good chance he might have Down syndrome,” but did you know… I went on and on about the splendor of children and adults with Down Syndrome. I showed him the Instagram posts of Halie and Matt McClaran and their beautiful son, Lane. “Look at how cute he is, how could this ever be scary.” I shifted to Melanie Droubay’s page, “Our Huddy Buddy.” Look at how cool he is.
By this point, we were both in tears again. I showed him my notebook and the list of questions, ideas and plans I had written over the course of many weeks’ worth of research, reading and pondering. “He will start physical therapy the moment they allow us, we will find him a friend who is close in age, he will go to Disney World, he will exceed milestones and expectations, he will play any sport he wants, he can be a musician, maybe a famous Pianist - whatever he wants.”
His Arrival
Two weeks later, our Jack entered the world, quickly and ever so calmly. The moment I saw him, I knew our baby boy had Down Syndrome. However, a sense of peace and tranquility transcended through my body “everything was going to be okay.” Not because I planned for it, but because he was actually here, and he was safe and healthy. Jack was bliss, he was the sweetest and cuddliest boy. His smell instantly became my favorite scent in the entire world. His deep stare through those dark blue eyes, and his cute curiosity was addicting. I also immediately realized I was so fortunate to marry a man who not only loved me, but who loved our son so much that I never had to question whether he was okay with the diagnosis of our baby.
Around the time Jack turned 2 months old, once the initial wave of bringing a human life into the world had come to pass, I revisited my “Jack notebook” and got right to work. During his nap times, I would make calls to our health insurance, physical therapy clinics, and genetic counselors. I also navigated researching his heart’s condition. During that time, I also reached out to Halie McClaren, one of the moms on Instagram I first encountered who shared Lane’s story. By the grace of God, she responded to my message and surprisingly only lived an hour and a half away from us. A few days later, we went to visit them for brunch. We sat at the table for over two hours chatting away about our handsome, intelligent and silly boys. I remember getting back in our car to head home and saying to Carter, “find a friend close in age… check!”
It’s Jack’s World!
The next several months consisted of a beautiful routine. On Tuesdays, we visited Robin Miller for physical therapy. She was the only physical therapist who agreed to see Jack at such a young age. She truly believed the earlier babies got started, the better the results. We were an instant fit and Jack adored her. She then helped us find an occupational therapist that Jack would see once a week. By the time Jack was 8 months old, we got connected with a speech therapist. The progress was astounding in comparison to what milestone markers projected for children with Down Syndrome. “The plan is working!” I explained to Carter, “He’s crushing it!”
By the time Jack turned one, he was actively enrolled in physical therapy, occupational and speech therapy, attending a once-a-week development class in Tulsa and had more friends than I ever could have imagined, he was so popular. “Maybe he’ll be a pianist!” I eagerly shared with Carter. “Maybe I can caddy for him on the PGA Tour,” Carter would respond.
The Worst Ten Days
This is the part I am most afraid of sharing with you today.
Not the part of Jack being diagnosed with Down Syndrome. Not my fears as an expectant mother and not my concern for his heart condition. In March of 2024, our precious Jack began experiencing breathing difficulties while he slept. We quickly visited the ER for the first time in his life. His oxygen level was at an extremely low and dangerous level. Our Jack was not a sick baby, in fact, he had only been sick maybe twice. We definitely protected him. Religiously ensuring that he was not exposed to unnecessary risks.
“Pulmonary hypertension.” “The hole in his heart had grown exponentially and was causing one side of his heart to swell.” Within 2 days of being admitted into the Pediatric Intensive Care Unit at OU Children’s Hospital, Jack had to be placed on ECHMO, life support. We didn’t understand. How could our Jack, a healthy, happy, beautiful little boy, be on life support? How could our sweet boy who is about to turn 18 months be fighting for his life. It all happened so fast. It was all so confusing. We were terrified.
At this point, I really hope I have not frightened you.
Although our story didn’t end the way we ever planned or even considered, Jack is still our story. The little boy who allowed us to become mom and dad. If there is one takeaway I can leave you with today – it’s that I hope you know it’s worth it, your beautiful baby is so worth it. That precious child you may be currently nervous about, who may or may not have Down Syndrome, is worth every second. I hate the phrase ‘if I could go back in time,’ but allow me to use it once. If I could go back in time and know what I know now, I would tell myself there’s nothing to fear. Sure, there may be challenges, obstacles to overcome, but there is nothing more worthy than your child. So, with a warm smile, Carter and I both greet you, congratulations on your beautiful baby! And welcome to Jack’s Friends!
How we wanted to tell Jack’s Story
Before we began drafting the foundation’s website, we brainstormed how to share Jack’s story. This is the part we could never agree on. How could we tell expectant parents that everything will be okay? How could we tell eager parents that their baby could grow up to be a pianist or a professional athlete or model? Who were we to share our story, when we ourselves lost our entire world? How can I be worthy of writing to you now?
Then one word came to mind. Perspective. After 10 days of watching our baby fight tirelessly for his life, we were finally able to hold him in our arms again while we sang Holy Spirit and he peacefully slipped away to join our Heavenly Father. Eighteen months. Eighteen months of the purest kind of love, happiness, laughter, learning, mealtimes, play dates, road trips, plane rides, afternoon walks and so much more. Exactly eighteen months with our beautiful baby boy. Notice, I didn’t say a ‘baby boy with Down Syndrome.’ Or a boy with a disability. Just a beautiful little boy full of wonder and joy.
