Finding My Way

Posted on June 21st, 2022
Mamabear and her cub

I’ve been told I come off as too strong and direct. I was a bit of a live wire when I was in my 20s and early 30s. I smile as I remember how passionate about my job, my people and my beliefs I was. It was as if I was ready for battle if that was what it was going to take. I’ll never forget a new VP of Digital Marketing coming into my company and piece by piece he was dismantling things I had built. I was firing off emails and my boss came over the top and sent me two small words that stopped me in my tracks. His email simply said, “Making friends?” He was one of the best bosses I ever had. One of the few that wasn’t trying to break me, but simply trying to refine me. That’s rare and I learned a lot from him. I also learned a lot from that VP of Digital Marketing and he became a wonderful mentor and boss as well. I was lucky to have some good influences that weren’t out to clip my wings. Most of those encounters came after I had my youngest son, and I have to tell you, there was no breaking me after what I led him through.

My youngest son was born with a rare disease called Heterotaxy Syndrome and a very rare heart disease that set us on a course of three open heart surgeries and a stomach surgery before he was 18 months old. His first three years of life were spent in and out of hospitals and making decisions no parent should ever be faced with. Throughout that time, somehow I found an inner strength, voice and footing that became unwavering. When you are watching your son fight for his life something inside you awakens. Or at least it did for me. I became very in tune with my gut and did not second guess myself. I remember being in a very unsure position with very few answers, but never feeling unsure myself. It’s hard to explain what happened to me during this time, but I can tell you it was a shift. A shift inside me that left me strong and self assured. And that strength and foundation never left my body even after we were out of that battle and he was home from the hospital.

When I was younger I had been shushed for being too loud and had been told I was “too much” multiple times. These comments had often been followed by some sort of appeal for me to be some form of “softer” and a “good girl”. As I entered the workplace, I struggled with who I was supposed to be as an employee and as a leader. Always finding myself in leadership roles earlier than most and in male dominated work environments, I was searching for who I was supposed to show up as. My life had been a series of having to take charge of things at an early age. Being called to grow up faster and make decisions that were always bigger than my age. Now, looking back, I can see the threads and how each challenge was preparing me for the next. And all of the challenges I experienced as a young girl definitely went into preparing me for my journey with my son. But the inner strength I would need to call upon was tremendous especially with how women are viewed if they are assertive, determined and driven.

Did you know that until age 12 boys and girls report to have identical levels of confidence, but by 14 a girl’s confidence drops by 30%, (1) making her less optimistic, less likely to take risks, and less resilient. It seems the sets of rules are different for males and females. Boys will be boys, but girls should be sweet, quiet and caring, right?

By 13, there is a 45% chance that a girl will believe she’s not allowed to fail because she needs to be perfect(2). In trying to be perfect and making everyone happy, she stops expressing her needs, her feelings and her opinions- she stops being authentic, losing her voice. (2)

Society promotes women’s quietness in the name of goodness while not realizing that the loss of voice, in turn, splinters self esteem, muzzles intelligence, and forces us to repress our desire to grow. We shrink ourselves.

During performance reviews, only 2% of men are told they are abrasive while 75% of females have reported being told that they need to use a softer tone. (3)

In male-female conversations, males are responsible for 96% of interruptions- even in the Supreme Court, female justices were 3 times more likely to get interrupted than male colleagues. (4)

So, even if we do find the courage to speak, we will most likely be talked over, interrupted or told we’re once again using our voices the wrong way.

Throughout my son’s journey I would ask questions and often they were met with responses that clearly stated I had no right to question the doctors and their authority. And that simply isn’t true. I never let that be the answer. I have so much respect and admiration for all of the people that helped heal Connor, but that didn’t mean I didn’t have a voice or a say in his care. And balancing all of this was not easy. Some of it was a real fight but a fight worth it in the end. I truly believe that the outcomes were achieved because we walked the journey side by side. My questions were valid and made them better at caring for their patient.

The journey into the heart community and fighting for his life has forever changed me. I no longer second guess myself and let people question me or make me feel small. I gather the facts, data and do research and ask the questions I need to understand what is happening. It’s important that we have an understanding of the world around us. I found a balance between my voice and their actions. And a confidence that won’t ever allow anyone else to make me feel “less than”. No matter who they are.

One of the key moments happened very early on in his journey. No two heart defects are identical. They are experienced and knowledgeable about how to heal a defect, but our heartbeats were beating as one for 9 months as he grew inside my body. And what a mother knows about her baby cannot be shushed or dismissed. When Connor was three days old and one day before his first open heart surgery an echocardiogram technician or doctor (I don’t know his credentials) came into the room to do an echo one morning and Connor was a little squirmy. The man was rude, abrasive and agitated the minute he walked into the room. He did not greet me or make eye contact. He simply went to Connor’s crib and started poking at him. Then he yelled to the nurse at the top of his lungs. His orders were to sedate the baby. I jumped out of my chair and said “Why are you sedating him?”. I only had one day left with him before he went into surgery and the last thing I wanted was for him to be sedated. Without looking at me he said, “I need him still”. He yelled again, over my head, “Nurse!” I came to the crib and grasped Connor’s hand. He wrapped his little fingers around my thumb. I said, “He doesn’t need to be sedated”. He was so annoyed with me. His body language was actually prickled. He finally looked at me and said sternly, “He has to be still.” I looked at him and said, “Ok”. I laid my head next to Connor’s on his little crib and continued to hold his hand. I began to hum softly in his ear. It was a little song that I had hummed to him throughout my pregnancy and throughout these first 3 days of his life as we listened to all of the beeping and bells in this hospital room. Connor’s body stilled. And I continued to hum. I didn’t stop or look at him, but just continued to hum and Connor didn’t move a muscle. He turned his head toward mine and we stayed like that the entire time the echo was being completed.

In my mind I thought with victory, I can soothe him and calm him with the sound of my voice and the touch of my hand when you wanted to give him drugs to sedate him. You are his doctors and I am his mother and he needs us both to heal.

I found my footing and my balance. And I never let go of it! No one has the right to make you feel “less than”.

February is Congenital Heart Disease Awareness Month. CHDs affect approximately one in 100 births every year in the United States and are the most common type of birth defect.