On August 26, 2019, my entire world came to a standstill. I was 24 weeks pregnant, overwhelmed by anxiety.

My visits to the OBGYN had become increasingly frequent. For the third week in a row, we had been called back for additional tests. Although I was thrilled to catch glimpses of our soon-to-arrive Heery Wyatt during these check-ups, an uneasy feeling gnawed at me. Since he was our first child, we had meticulously planned every aspect of his arrival.

Sitting in the examination room, time seemed to stretch endlessly before my doctor walked in. His typically no-nonsense demeanor was clouded by an unusual sadness. He looked at us and said, “We can’t see any arms.” I stared at him, as if he’d suddenly spoken a foreign language. I repeatedly asked, “What do you mean?”

He couldn’t confirm it yet, but he believed our child would be born without upper extremities. I can’t recall much about the journey back home. I vaguely remember my husband and me sitting together, mostly in silence, clinging to each other for support.

The very next day, we were referred to a high-risk doctor at the top children’s hospital in our area. I carried all my ultrasound images from the entire pregnancy and asked the doctor to point out what I thought were arms. I desperately clung to the hope that there had been a mistake. The information revealed during the ultrasound became too much for me to bear. I kept having to leave the room because I couldn’t handle what we were seeing. I looked to my husband for answers, but he was as lost as I was.

I distinctly remember sitting in the doctor’s office, trying to hold my breath, as if it would provide a clearer image on the high-resolution ultrasound. Every picture confirmed it: Henry would be born without arms, only hands directly off his shoulders. I walked out of the high-risk doctor’s office feeling more numb than I ever had in my life. I could hardly breathe and struggled to walk without my husband’s support. I vomited in the parking lot, not from nausea, but from sheer panic.

My husband and I cried for hours as we drove around, trying to clear our heads. We ended up by the local beach, sitting in the car near the water. I obsessively Googled, “What causes no arms?” and found no satisfying answers, which was incredibly frustrating because I needed to understand more.

The doctors couldn’t confirm Henry’s condition without the results from an amniocentesis, but they suspected he had a rare genetic disorder called Thrombocytopenia Absent Radius Syndrome, or TAR for short. It leads to low blood platelets, missing arm bones, other limb deformities, a compromised immune system, and often, a milk protein allergy. There are two types of TAR syndromes: “long arm” and “short arm.” Long arm TAR patients are missing only the radial bone in the arm, while short arm TAR patients lack all three arm bones. Henry was the rare 1 in 200,000 with short arm TAR.

We shared the limited information we had with our close family members, but they had many questions, and I had few answers. I kept asking myself, “How can we raise a child with no arms?” At first, I felt guilty about my concerns, but I later realized that my worry wasn’t about his arms or lack thereof, but rather about our ability to provide for him. I felt inadequate.

Our next step was learning to adapt. I was deeply concerned about finding clothes for Henry, as nearly everything had sleeves, and he was due in December. The feeling of inadequacy overwhelmed me. I couldn’t sleep or eat, and I felt like my soul was breaking. Fellow parents of special needs children understand this feeling. It’s heart-wrenching. However, I knew I couldn’t stay in that dark place. I had to fight and find ways to support this incredible child with “lucky fins.”

Through hours of research into our new reality, I discovered an amazing support system on a TAR Facebook page. These people gave us hope and provided a lifeline when I felt like I was drowning. Since Henry’s birth, I’ve held onto these friendships, with one particular mother, Christina, helping me weather many storms. She taught me to find strength within myself and advocate for this vibrant boy.

When that cold December day arrived, I felt as prepared as one can be. I was nervous, excited, and scared, but above all, I was ready to meet this tiny human who had already transformed my world. Henry Wyatt was born at 12:54 p.m. via c-section, a procedure I had been reluctant to undergo. The doctors had advised against a vaginal birth due to the uncertainty surrounding his platelet count. I felt like another choice had been torn from my grasp, but I reluctantly consented.

To this day, I’m profoundly grateful for that decision. Henry’s platelet count hovered around 13,000, a far cry from the 150,000 to 450,000 platelets that a healthy baby typically has. A count of 10,000 is the threshold for potential brain bleeds. Henry spent the first month of his life in the NICU, and we were finally released on Christmas Day.

Regrettably, we returned two days later due to a high white blood cell count, which led to another week-long stay. We endured numerous transfusions, IVs, tests, examinations, and x-rays. However, we also received an abundance of support, love, and forged new friendships. The incredible NICU nurses became my lifeline. I was determined to breastfeed, despite Henry’s severe lip and tongue tie. One nurse, Rachel, supported me every day until we successfully established breastfeeding. Unfortunately, a few months later, Henry would refuse to latch, and I transitioned to exclusively pumping, which I proudly did for a year.

For some inexplicable reason, we were chosen for this journey. While it may never fully make sense, it is our reality, one that we’ve learned to embrace. Henry is now 18 months old and, to us, the most perfect child in the world. The first time I laid eyes on him, I was in awe. We had created him, and he was ours forever.

These days, I find myself watching him as he sleeps, eagerly anticipating the person he will become. He is brimming with personality and radiance. He loves to move, bounce, and roll around the house. His favorite toys are his trucks, which he maneuvers with his feet across the entire floor. He feeds himself and holds his sippy cup. He has undergone five surgeries, countless doctor’s appointments, and too many hospital stays to count. There will be difficult days ahead, but there will also be incredible ones. Our mantra remains, “No arms? No problem!”