Whole HEARTED
Mother shares feelings of fear and helplessness at son’s surgery
“I think I hear a murmur.” And so it began. And now this barely audible swoosh, which had finally revealed itself during a routine asthma appointment, needed to be investigated. And when it was, an echocardiogram revealed that beneath the soft sweet skin of my beautiful blond 10-year-old boy, lay a congenital heart defect known as an atrial septal defect with anomalous pulmonary vasculature.
This diagnosis meant that our son, Finn, had a hole in his heart and that the vein from his right lung was draining into the wrong chamber. His body was being oxygenated mostly by one lung and the right side of his heart was enlarged from being overfilled.
Looking back at his medical history, there were signs, but hindsight always has the easiest job. He was underweight, we assumed the genes of a distant
relative, had a pronounced chest wall and terrible coughs each winter. Never did we once consider that anything like this could be possible but now facing screens of clear images, there was no turning back.
Appointment led to appointment until soon it was determined that open heart surgery would be the only way to fix the overworked little heart of a tiny person who had already taught me so much about love.
From the beginning, I felt confident that the many specialists we met with at the Children’s Hospital of Eastern Ontario were exceptionally talented. But what I needed most from them was assurance that they understood how loved Finn was by us and how much our family needed him. When all I could do was cry, every time my son left the examining room, our cardiologist offered the magic words. “Please don’t leave today until you have answers to all of your questions. If it were my child, I would be really upset too.”
Having something seriously wrong with your child is a great equalizer. Love cannot fix it or take it back and no amount of money can buy the promise that everything will be OK. There was so much loneliness and a feeling of distance and isolation even when surrounded by people.
Telling friends and family brought little comfort because in the beginning, it was impossible to disclose what was ahead without crying and being unable to breathe. Repeated explanations numbed the task, resulting in understandable shock in unsuspecting acquaintances merely asking about our “summer plans.”
What I think I needed the most was the permission to fall apart in an ugly, snot-covered, unapologetic way and know that I would still be loved out the other side. That I had enough credit in the bank for this.
And I felt endlessly sad for him and guilty for all the times we told him to skate harder and swim faster. How we expected him to get an A in gym and he did. That he was broken and damaged inside and had been working so hard with less despite it all.
Trying to ignore what was coming in August was no use. One night at dinner, our youngest daughter turned to ask her father, a surgeon, “Daddy, how do you operate on a beating heart?” Putting down his fork he replied, “You can’t, it has to be stopped first.”
Too much wine later, I retreated to our bedroom and burst out angrily, “Are you even worried?! Are you even thinking about this?! Do you even care as much as me!?” In a calm voice he said, “Come here. Look at these. On an iPad, laptop and papers strewn across the bed he had every possible procedure researched. “But what if?” “It won’t.” “But what if he?” “He won’t.” “You are my best friend right?” “Yes.”
I drifted off listening to medical explanations I would never need to understand with my face buried in his T-shirt. I knew then that we were securely bound together and that all it would take is the connection of hands under the comforter in the dark to say all of this.
But worry like grief cannot be reasoned away. I pushed it as hard as I could but it pushed back harder and found me when I was alone or about to fall asleep. It sent me crumbling to the floor of the bathroom and took my breath in the car when I least expected it.
To me, worry is like a water balloon that will either inevitably pop or slowly leak. In this case it illustrated itself physically, especially when I had convinced my mind that we were managing just fine. In early summer, I broke out first in acne followed by cold sores. I knew my husband was feeling the stress too because the strange dreams of his residency started to come back.
At first, I avoided listening to music but then began intentionally using sad songs as a mechanism to quickly release a few built-up sobs before tackling the next thing on my to-do list.
Eventually all the pushing got tiring and I didn’t feel like pushing back anymore or getting out of bed. Everything felt like an effort and I got so sick of waking up sad, stupid, clumsy and terrified.
Calling on my Catholic childhood I tried to pray but all that I could remember was, “For these and all my sins I am sorry.”
So somewhere deep inside of my mind I made the only decision that would allow me to take back control of the situation. I decided that he most likely would not survive the operation and began to prepare.
From there every activity felt like a bucket list item. I could barely look at him at the Mumford and Sons concert we both had eagerly anticipated. While watching his final haircut before surgery, I had to restrain myself from crawling around the floor of the shop, gathering up all of his fluffy blond hair in my hands to keep. I didn’t want to take pictures or frame his artwork out of fear that they would become final memories.
There is something that feels very unnatural about scheduling a major operation for a healthy looking child who could climb water slides just one day earlier. On the night before his surgery, my husband helped Finn wash his chest with antibacterial hospital soap and asked him if he was scared. At first, he answered no because he had heard and understood everything that would happen the next day. However, when his dad pressed further asking if he was just trying to be brave he answered, “Yes.”
The idea of turning your child over to strangers and walking away is one of the most unnatural feelings. Even when done in their best interest, it feels like a breach of trust and showcases their tragic vulnerability. I dreaded the moment when we would have to say goodbye, when the doors would close, and we wouldn’t be able to take it back.
What I did not expect was how different the hospital environment would be from what I had imagined. I found great comfort in the gentle, kind loving hands that made letting go so much easier. Tucked into a cosy waiting room I welcomed how good it felt to move forward and the infusion of determination that began flooding in. Forever my favourite words, delivered by a soft voice, will be, “Everything went really well and he is coming off of bypass now.”
And he didn’t die. Which is not surprising because I am the only one who thought he would. And that is why when the ICU team approached us with concern that he had experienced a stroke, paralyzing his leg during the operation, I shrugged and said, “Oh well, he can always be a wrestler.” They next took my husband aside and asked him if I knew what a stroke was. He replied, “Yes, but she thought he was going to die so one leg is fine with her.”
I will never be able to properly thank every person who came into our lives in that incredible hospital, from the cafeteria to the operating room. My husband and I aren’t always at our best during team related activities but somehow managed this perfect dance that made me confess, during those crazy days, that I had never loved him more.
There were momentsI felt the blood in my head rush to my feet but within the walls of the hospital, where Finn healed and learned to walk again, I felt safe and active. It was only when I returned later to the ICU with gifts for the staff that unexpected sobs bubbled up.
I also was gripped by a need to donate everything I had lovingly chosen for our hospital stay, as I could no longer handle the sight of them. Once back home, my energy quickly returned and the weight of what we had been carrying came clearly into focus. I will never for a minute take for granted how lucky we were or stop feeling tremendous empathy for those who were not as fortunate.
More than two years later, these feelings feel like unique gifts packaged with responsibility. I consider myself a member of a most undesirable club. A few months ago, I encountered a mother weeping in the hallway of the same hospital, waiting for her son, recently airlifted from an accident scene, to return from x-ray. Joining her on the bench, with tears in my eyes and a lump in my throat, I felt privileged to be able to turn to her and say, “I’m a mom too, and I have been here.”