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Stories, observations, and reflections from a life of raising boys

What I Learned When I Donated My Liver To My Best Friend

Jenifer DeMattia

I have been thinking a lot about fear lately. How it begins to manifest and change us. I can easily think back to my youth and identify my fears. Today I am envisioning myself at 12-years-old, feeling terrified as I stared into the small drainage tunnel that extended all the way underneath a long driveway. The boys in my neighborhood dared me to crawl all the way through. I wanted to impress them so I got down on my stomach and began to enter the dark space. I barely fit and was essentially consumed with fear, so I backed out just the way I’d entered. I could write on forever about decisions made based out of fear throughout my teenage years into adulthood.

And then I had children. Fear does not even begin to describe that.

The days where I felt terrified as my mom closed my bedroom door have been replaced by nights spent convincing my son there are no monsters in his room. Fears about not dropping him off at school on time, that I left the baby gate open, that they swallowed something they weren’t supposed to, or have an unidentifiable rash. Fear that the world will be unkind to them or something much worse and that I wouldn’t be there to save them. Scared to death that I’m doing it all wrong. Add marital conflict, bills, Autism, bedwetting, the flu, losing my grandmother and so on… there comes the unsettling feeling that life is hard and I am in the tunnel again, feeling like I want to back up to where I started, where it felt safe.

Oh yes..And then my best friend was diagnosed with cancer.

It started 9 months ago on June 18, 2014 after she was diagnosed with a rare bile duct disease called Primary Sclerosing Cholangitis, or PSC as we refer. Basically a disease of the bile ducts that eventually leads to liver failure. Then August came with the diagnosis of bile duct cancer, rare for a 32-year-old female. And so life became consumed with hospital stays and nights where she would cry herself to sleep in pain, and what I can only assume to be the suffocation of fear. She was immediately on a plane to Minnesota seeking out the best care. Traveling 1,000 miles to undergo chemotherapy and intensive radiation in hopes of killing the cancer inside her body. Essentially, she decided to enter into the tunnel. Into the darkest of spaces. When she returned home, the hope was quickly crushed by more infection, sickness and hospital nightmares. She was told that the only cure was a liver transplant. However, due to an immense shortage of deceased donors, and her aggressive form of cancer, a living donor would be her best option.

And then, this happened:

Me: “Hey buddy. You know I’m going to miss you like crazy right?”

(Said between kisses all over his sweet face)

4-year-old son: “I’m going to miss you too mommy, could you please stop doing that.”

Me: “No, I need to give you enough kisses to last a while.”    

(This time said between an all out tickle-kiss attack)

4-year-old son: “I want to go to the soda town with you. Please take me there with you.”

Me: “The state is called Minnesota, but there is no soda there.”  

(I totally lied, they had soda there)

Me: “Will you do me a favor and be extra sweet to your brother while I’m gone?”

4-year-old son: “No.”

That was the extent of most of the conversations I had with my son before I left for Minnesota to be a liver donor for my best friend. The transplant was scheduled for December 15, 2014 but it didn’t go as planned. The day before undergoing a transplant, a staging surgery takes place to determine if the cancer has spread. If it has, the transplant can no longer happen. Ever. Following the staging procedure I watched her mother’s face when they told her the cancer had in fact spread. As a mother myself I could not comprehend what that would feel like. Her only chance at long-term survival taken away in an instant. And then I watched the look on my friend’s face as they told her. She was brave. I was back in the tunnel, frozen in disbelief. I had been preparing myself mentally to be a donor for months. I passed every scan and test they gave me to determine my body could handle the surgery. I was even told that my liver was unique in size, and now I had to somehow comprehend that it was not going to happen.

And my boys.  

The Flash, as my son likes to be called, received a diagnosis himself last year. Autism Spectrum Disorder, without intellectual or language impairment. At age two-and-a half he began having intense emotional episodes. As he grows his emotions continue to perplex him and they consume him in moments of fear I’m guessing. I never thought Autism looked like this. But then again I never really knew what cancer looked like up close either. With the emotional battles I see him fight, he truly is a superhero to me. And I was looking forward to the day when I could look him in the eye and tell him that I was a superhero too. That his mom went to battle against Cancer. Truly the scariest villain there is. I wasn’t scared anymore, and yet it felt like the world had taken away the opportunity for me to prove it.

What I’ve come to understand is that fear is like the monster in my son’s room. It simply doesn’t exist when the lights turn on. Fear is a false perspective of what is real. You can choose to let it consume you or you can make the decision to take control of it. I don’t think of fear in the same way anymore, but I also don’t blame that 12-year-old girl for not going through the tunnel. I just wasn’t ready yet.

On December 19, 2014, I donated fifty-five percent of my liver to my friend because I love her. Because the lights turned on for us, and we no longer saw fear lurking. By what has been described as a medical miracle, three days after the staging procedure, the decision was reversed based on further pathology reports. It had never happened there before. We were given 18 hours notice before the transplant would take place after all. We spent the night before the transplant in the hospital together, processing through the emotional rollercoaster, but mostly laughing about random things. Attempting to realize we were actually living this life, as unbelievable as it was.  I lay on my cot at 4:30am staring at the ceiling. Smiling. I was thinking of the 12-year-old me coming through the other side of that tunnel. It wasn’t just about going through with the procedure, but being provided with the opportunity to lead my children by my example. That it’s possible to face your fears head-on.

Which lead me to this conversation two months later:

Me: “Sweetheart, what are you doing?”  

(Said while I’m driving, distracted by him flailing his blanket around)

4-year-old son: “I’m giving Nee Nee my liver”.

(Nee Nee. A blanket that follows him wherever he goes)

Me: “Oh yea, why?”

4-year-old son: “Because he’s sick and I love him.”

(Well there you go)

So yea, I’ve been thinking about fear lately.

What my friend and I endured over the last few months, I can’t really explain. It’s like trying to describe what it felt like to hold my babies for the first time. There are just some experiences in life that you could never possibly express with words. My friend is still fighting, but this time with a new liver. But more importantly, a renewed sense of fearlessness.

And as for me, I no longer fear being late to my son’s school. Some mornings we just can’t make it work. I’m not afraid that my son will have a meltdown. I do not fear Autism. I’m not scared that my kids won’t turn out ok. I am not afraid that I’m doing it wrong or that I’m a bad mom. My 16-month-old son described it perfectly even though he doesn’t really speak. When I arrived home after being gone over two weeks, I was tired and in a lot of pain. I wasn’t going to be able to lift him for months, and I wondered if he would forget me. But when I walked in the door he ran to me so I immediately sat on the floor. He lifted up my shirt and gently placed his head on my stomach, right next to my healing scar.

There is no uncertainty about it. Fear is insignificant when you love someone.

For whatever reason, throughout my life when I felt the sting of fear I would think about being inside the metal tunnel from my youth. There are simply moments in our lives that evoke paralyzing fear, sometimes for unknown reasons. My hope is that my journey being an organ donor will provide my boys perspective when they face their own impending dark spaces. That when they find themselves there, surely in a place of fear, they will remember to turn on the light and see that the only thing hiding in the darkness was their own strength. 

Jen & Leo first time.jpg