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MEET SABRINA 

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I like to think of my story as a Lifetime movie that even Lifetime questions using because the plot seems THAT unrealistic.

To understand who I am today, you need to understand who I was before because they are two completely different people.

I grew up in a close-knit family: a loving and beautiful home, mom and dad, sister, brother. Complete suburbanites and the exact replication of what a fairytale would tell any family is picture-perfect.

Little did I know growing up that one day that picture would not be what was shown in the fairytale books. One day our picture would not look so perfect. One day our family would be hit with twists, turns, terminal, and time and time again, we would be surprised by what was thrown at us and what we as a family could handle.

Soon after having my oldest son, Thor, my dad (whom you will hear me often refer to as Ton) started having aches and pains, which led to trips and falls, leading to years of struggling to find out what and why his body was failing.

2017 started and ended the same: life-changing.

In January 2017, during my second trimester, it was discovered that my child had trisomy-17 mosaicism, one of the rarest trisomies in humans, and we would not make it full term. They found it was also a partial molar pregnancy, and clusters of grape-like cysts quickly consumed my uterus. In the beginning half of 2017, I spent countless hours in and out of the hospital, appointments, and labs, monitoring my body to ensure the cysts were gone entirely to stop the risk of anything left turning cancerous.

Fast-forward to November 2017, and Ton’s falls became more regular and his fight for an answer stronger as he and my mom fought hard to find a neurologist that would listen. 

On November 28th, 2017, that picture-perfect family of four sat in a room together and was told that the person they looked up to the most was not only diagnosed with a life-altering disease; this disease was terminal.

Everything on the internet told us we would have two to five years left with him.

We did not even have two years.

Six months after Ton was diagnosed, I discovered I was pregnant with my high-risk rainbow baby and struggled with fear and selfishness. When I was pregnant with Thor, I knew the exact size of fruit he was at every moment. I could tell you how many weeks, days, hours, and minutes pregnant I was at the drop of a hat. My pregnancy with Ashton was different.

 

I felt that counting down the moments till he was here was also counting down the moments I had left with my dad.

Days after being discharged from the hospital after having Ashton, my little family of four packed up our things to move in with my parents knowing the next time we came home would be after Ton passed away.

Talk about the circle of life, right?!

Ton passed away two weeks later, less than two years after his diagnosis.

As a family, the picture-perfect family, now down to three, thought we were done with the twists and turns when a routine procedure once again left us shocked.

My mom went in for a routine coloscopy just shy of her 60th  birthday when they found a mass. That mass was Stage IV Colon Cancer.

Less than two years after losing our dad, my brother and I were in a situation again where we feared we would be losing our mom.

Thankfully after surgery, twelve rounds of chemotherapy, five rounds of radiation, and a lot of miles on her car going back and forth from her house to mine (which is thankfully only twenty minutes from her Oncology team), she is in remission.

When I was growing up, Ton and I would argue silly arguments, but for two people who need to have the last word, these arguments could go on for too long. We are the type of people who fight hard but love harder. I also knew how I could speak to my dad was different than my mom. To put it nicely, my mom would never have put up with the same amount of sass.

As an adult, I later found out the method to his madness, and little did he know he was providing me with an inner strength I would use not only for him, his disease but for patients and families all in his honor.

Ton wanted to give me the freedom to argue with him freely. He believed that if I could disagree, talk back, and stand up to myself to my dad that I would not be afraid to do the same to men in my life as I aged. While the men in my life might not be as thankful for this life lesson, it worked as intended.

He taught me that it did not matter if it was a man or a woman; if you had something to say, you say it. Our house frequently had deep conversations, emotions, arguments, pros, and cons. I wear my heart on my sleeve and am the first person to tell you that you are wrong. I am also the first person to admit if I, too, am wrong.

These lessons were lessons I not only carried into adulthood but also how I transformed as a parent while caregiving.

Children become adults.

Moments become memories.

My children were there, each for a different part of watching their mom’s story transform from “just” a mom to a caregiver to an advocate using her experience, their experience, to help others.

2017 was a life-changing year.

 

Little did I know then that it would change my life in ways I never believed would be possible.

Ton’s voice stopped. I could not tell you the exact day. I cannot tell you the last words he said out loud. His voice stopped so mine could start. In time the strength in my voice became loud as I found the passion in fighting in his honor. That passion sparked a fire in my heart to continue the fight for all of you.

He unknowingly showed me my entire life the power behind using your voice. It took him losing him to bring out the strength in my voice, and I am here to help you bring out the power behind yours too.

 

Ton’s voice stopped so mine could start. My voice has grown. My voice is louder and stronger, and here to assist in building, boosting, and being your advocate nationwide.

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SABRINA JOHNSON ADVOCATE LLC
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