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  • Writer's pictureSabrina Johnson

How THEIR life changes YOUR fears

I like to think of myself before the world was turned upside down and after.

2017 was the start of what would end up being a life-transforming year.

We rang in the new year a one-year-old just shy of their second birthday and were in the second trimester of my second pregnancy, ready to see what the year would bring with two children.

A couple of weeks later, I went in for my monthly OBGYN appointment and heard the words no woman should ever have to hear- “we cannot find the heartbeat.”

The next couple of months were spent in and out of the hospital, with what felt like thousands of blood draws and a pause on trying again.

During that time, we discovered that I had a partial-molar pregnancy, and our child had a rare chromosomal diagnosis called Trisomy-17.

While I was blessed with family and friends that went above and beyond, my favorite phone call was with my dad (you’ll often hear me refer to him as Ton).

I was nervous to answer his call for some reason. Having a miscarriage has so many ups and downs, but one of the hardest for me was feeling like I let everyone else down. Even though I KNEW this WAS NOT true, I felt like my body failed everyone.

I hesitantly said hello, and before I was done, he said, “man, this sucks.”

His comment was the validation I needed. It did suck.

There are times when the typical:

  • I’m sorry

  • Things happen for a reason

  • At least you can try again

comments are needed, but the validation to say how you really felt and the approval to say valid words were needed.

Hard moments suck. If you need someone else to say it first for you, as I did for Ton, I am here to permit you to scream it from the rooftop.


Little did I know it was the start of the worst year.

After years of struggling to be heard, Ton was diagnosed with ALS in November.


We were all in the room when the doctor confirmed our biggest fear, a terminal diagnosis that was so apparent to the doctor; he explained that he ran tests out of standard care practice but knew when Ton wheeled in that he had this disease.

I will go into more detail in another post regarding his diagnosis, the what’s, who’s, when, where, and hows.

Before all of this, our family was “normal” and healthy.

Do not get me wrong; we’ve had our issues.

  • Mental health issues

  • Family members with addiction disorders

  • Aging wear and tear surgeries

Those issues, though, never made me fear the worse. Those issues were ones you get through. Bumps, bruises, and heartache- but you get through it together.

Together was how our family worked. The loud, proud, Irish-Croatian Southside Chicago family that shows up when things go wrong argues when we are upset, and then sits down for a meal to laugh about our day. Together was how we always got through things.

But together, as four was about to change.

Less than two years after his diagnosis, my mom, brother, his beloved caregiver Austra, and I lay with him in bed and held him, and he took his final breath.

Together- once four, now three.

Fast-forward a year and a half later. A long-term childhood friend placed a sold sign in front of my home.

My mom renovated and moved into her new place. Her place. The first time she would ever be living alone.

Another new, another adjustment, but together we would adjust.

Together- the new normal of three.

Little did we know, together, we would be struck again.

My mom went in for a routine colonoscopy to celebrate turning 60 (is there a sarcastic meme for this moment?).

A short procedure turned into hours, and a text me when your done message turned into a group text to prepare for a FaceTime.

Before 2017 the worst-case scenario never lives at the forefront. Before 2017 Sabrina lived life with a smile, a thrill of dropping everything and being spontaneous, living life on the edge, and figuring it out later.

But not anymore.

This Sabrina, the post-2017 version, lived in constant fear. Post 2017, Sabrina knew that rare is not so rare, that things happen, and those hard conversations are needed.

This FaceTime would again prove that our new norm was that the worst could happen.

We FaceTimed together, the four now three, to find out that during the routine colonoscopy, things became not-so-routine when they found a “hot dog-sized” tumor.

Within 30 days of them finding the tumor, she had surgery to remove half her colon and a Stage IV diagnosis.

We were also amid a Covid lockdown and decided weeks before her colonoscopy to put my teaching degree back into play and homeschool my 5-year-old Kindergartener with the cutest 2-year-old teaching assistant.

Thor was 2 ½ years old when Ton was diagnosed.

Ashton is now 2 ½