How many beginnings do we have in a lifetime? If we count every new school, new friendship, new job, new move, new home, a marriage, and the birth of each child, they add up to a lot. For the purpose of this space, the beginning is when I finally awoke to the understanding that I cannot outrun sadness.
My life has been split into two halves: before Sienna and after Sienna. I was following a very typical life script up until Sienna was born. I had married my college sweetheart, and we had started our lives together, both navigating our careers and marriage, traveling together in our free time, hosting dinner parties, and getting together with friends and family as often as we could. I wanted a career that would allow me to “make a difference,” so I had earned my Master’s in Social Work before we got married and was still in the early stages of discovering my life’s goals when I became pregnant with Sienna.
My pregnancy seemed perfectly normal to me. Looking back, I see all the red flags, especially now that I have had two other children since then. It’s still a sore spot for me, how much I didn’t recognize because I just didn’t know what normal was. It’s taken me a long time to forgive myself for being so naïve because there were plenty of signs but I didn’t see them. Or, maybe, I chose not to.
Sienna wasn’t particularly active, and I never really looked pregnant. Those were the not so obvious signs. But, it all started when I was about 35 weeks along. Following a routine ultrasound, I was referred to a perinatologist because the baby’s ventricles were measuring larger than what was considered normal. I figured the doctor was just being overly cautious.
Alarm bells did not sound when the perinatologist brought up Dandy-Walker as a possible issue. They still did not go off when he sent me to get a fetal MRI. I figured all of this was routine CYA and the doctors were just doing what they needed to do to check all the right boxes. The MRI results came back as I expected. Baby is perfectly fine, said the radiologist. Ventricles are in the “upper limits of normal but that does not concern me,” he said.
Then, at 38 weeks, I was sent back to the perinatologist because she stopped growing. He diagnosed us with Interuterine Growth Restriction (IUGR) and checked us in for immediate induction. Everyone felt that, at this point, the baby was better off on the outside than on the inside.
After two days of horrifically difficult labor, my beautiful Sienna was born. Her eyes were swollen shut and she was super tiny, weighing only 5 lbs., 3 ozs. She passed her tests with flying colors. Every one of them, except for her hearing test, which I was told is also….normal.
Things took a turn pretty quickly. She nursed okay but had terrible reflux which caused the milk to come out through her nose. She would gasp and choke. She never seemed satisfied and had trouble gaining weight. When her eyes were open, which was hardly ever because she slept all the time, they were crossed.
Then, at her two week check up, her pediatrician heard a heart murmur. We were referred to a pediatric cardiologist who diagnosed her with two large holes in her heart (ASD and VSD). She needed surgery, but he wanted her to gain more weight first. She was still barely 5 lbs. at this point. We fed her every 30-60 mins, an ounce or so at a time. It was like feeding a tiny bird. She was so frail and sickly and seemed to be getting weaker instead of stronger.
One day, while I was feeding her, she stopped sucking and turned blue. Her breathing had completely stopped. Panicked, I yelled to my husband Dan to call 9-1- 1. He grabbed her from me and ran her outside. Neither one of us knew what to do, but we both thought she was dying. By the time the ambulance arrived, she had regained her natural color and was breathing fine. But, we were done. We no longer felt comfortable being alone with her without close medical supervision when she was in such a fragile state. Exhausted and terrified, we checked into Miami Children’s Hospital that night and begged them to do the open heart surgery as soon as as possible.
They agreed, and we were more relieved than we were scared. Finally, we thought, we can fix our baby’s heart and get on with our lives.
If only the story had ended there.
Shortly after the surgery, the geneticist paid us a visit and told us there was something wrong. “See that chromosome?” she asked us, as she pointed to a squiggly line that meant nothing to me. “Something’s not right with that, but I won’t know until Monday.” This was Thursday.
As we waited, we held our breaths and prayed. Our conversation with each other vacillated between words of hope and dread throughout the longest weekend of our lives. When the geneticist finally returned, I could tell by the look on her face that the news was not good. She asked us to come with her to a private room to talk. I said, “No. I can’t. I don’t want to know.” Fear and feelings of inadequacy completely paralyzed me, and I understood that whatever she was about to tell us was going to change our lives forever. And, as weak as I knew that was, all I wanted was to cling to the life I had imagined and resist the one that was unfolding before me.
So I stayed at Sienna’s bedside, and Dan received the news alone.
He came back several minutes later, white as a ghost and pacing. “Smith-Magenis Syndrome,” he told me as he handed me a black and white print out of a website’s homepage. When I saw the happy faces of the children on the page, my first thought was, “She’s going to live! Thank God!” But then, slowly, the realization of what we were looking at started to sink in, and the despair brought me to my knees.
Intellectual Disability. Aggression. Self-Injury. Sleep Disturbance. Developmental Delay. Prolonged tantrums. Hyperactivity. Attention-seeking behavior. Impulsivity. These words jumped off the page and shot straight through my stomach, twisting my insides into knots. My imagination fast-forwarded through my life with visions of lifelong care, heartache, and crushed dreams. Everything I had envisioned her to be, now felt impossible. Would she dance? Play sports? Go shopping? Play dress up? Get married? Some of the questions that popped in my head seemed absurd. But, there were others I knew I did not want to hear the answers to.
“What do you want me to tell you? That she’s not going to be retarded?” snapped the geneticist. Yes. Yes, that was exactly what I wanted to hear. But she couldn’t tell me that.
And then it was time to take her home.
The emotional pain I experienced in those first few months as a new mom was immense and nearly indescribable. I felt completely blind-sided and betrayed by my body. I was angry at myself for having missed all the signs. I blamed myself for what happened. Was it something I ate? Drank? Did I do this to her? Could I have prevented it? I ruminated on these thoughts and replayed my entire pregnancy over and over in my head, wondering what I could have done differently. I called random geneticists to be reassured that it wasn’t my fault. It was worse; it was completely out of my control.
I cried every day for months. I stopped eating. I thought about how much easier it would be on everyone if she and I just completely disappeared. I felt like I had failed at the most important job I had ever been given. It was all just too unbearable. The hopelessness made ending my life seem like a desirable alternative. Anything to stop the pain. But then we started talking about having another baby. This seemed like a reasonable answer to me, and it helped me catch my breath. It was my chance to feel joy again. To take the pain away. To get a do-over and start fresh. I couldn’t change her diagnosis, but I could fill the void of grief with something else.
And so began a decade of distractions I used to shift my focus away from anything negative. When Sienna was six months old, I got pregnant with my son Sean. When Sienna was nearly three, I went back to work. When she turned four, I co-founded a research organization for her disorder, and when she was seven and a half, my third child Ben was born. I resigned from my job to become a full-time mom. Sienna is now ten years old and, quite frankly, I have just grown tired of running.
Shortly after Sienna’s diagnosis, I began believing the misnomer that sadness is a sign of weakness and that grief has a time limit. I never really gave myself permission to sit with it. I made it my job to make myself okay, for the sake of everyone else. So, I learned how to run and how to numb. I distracted myself. Some of the distractions were good and productive. I discovered the fulfillment of channeling my heartache into something that could benefit people other than me and my family through the research organization I co-created with a fellow SMS mom. I never felt strong enough or brave enough to face any of this, so I pushed hard to prove that I was. I also worked tirelessly to give Sienna the best therapies, doctors, teachers, and chance at reaching her potential. I focused on the positives and on changing the things I could control, like my reaction to the situation. I managed to create a beautiful life that I am very proud of. But, other distractions were self-destructive. Alcohol became an easy fix. I beat myself up over a bad day and often set expectations for myself too high, thinking that by now I should be “over it” and I have no right to feel down or angry anymore. By convincing myself that I was always doing great, I lost touch with what I was actually feeling. And when I numbed the sadness, I also numbed the joy. I felt like an observer of my life rather than an active participant.
This is not how life is meant to be lived.
I’m awake now, and my eyes are wide open. I understand that sadness and joy go hand in hand and that there’s a seat at the table for each. I’ve discovered that my true strength is revealed when I allow myself to be vulnerable, so I’m ready to make peace with all of my emotions. I know now that I am strong enough to handle whatever I let in, and I don’t have to run anymore.
My beginning starts here.