How THEIR life changes YOUR fears

Sabrina Johnson
7 min readFeb 14, 2023


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 years old. Another diagnosis.

Terrified now that life was replaying, I did what I do in these situations and lived on autopilot.

My mom spent the next year having 46-hour chemotherapy treatments. Thankfully her doctor was twenty minutes from me, so we had an every-other-weekend visit.

The chemotherapy weeks would consist of a Thursday Bleach bath of my house preparing for my mom to arrive, Friday all day at the hospital with appointments and 5 hours to start chemo, and a fanny pack of chemo running through my mom at my house until Sunday. I would think Sundays were a “crash and burn day.”

The hospital taught me how to de-port the chemo to save us time, flexibility, and a sense of independence.

I’d unhook her from her chemotherapy, say our goodbyes and spend another day bleaching the house to make sure there was no aspect of her medication anywhere that could harm anyone. Then I would crash and nap from the exhaustion of life.

I felt like all I knew now was to fear the worst. I barely scratched the level of grieving Ton, and now I was fearful that I would have to add my mom to the list of goodbyes.

I have always been someone who loves hard. If I let you into my life, I will give you my all. I will give you everything I’ve got; I will fight for someone I love until I am blue.

Those feelings came with panic attacks, horrible anxiety, and days when I could barely get out of bed.

I feared letting anyone into my life because I feared those I let in would involuntarily leave. I was afraid that those I loved would get sick.

The one who loved to love was not afraid to feel.

This new normal- it sucked!

Their diagnosis’s changed me. Their lives changed my fear.

Any missed call, abnormal result, or appointment would send me spiraling.

Thankfully, after twelve rounds of chemotherapy and five rounds of radiation, my mom is in remission and doing really well.

Thankfully, together we remained three.

I am now a week post-op from a hysterectomy, and the recovery process has left a lot of time to reflect.

In the last couple of years leading up to this surgery, there were numerous appointments, blood draws, hospital stays, and procedures.

All of which my mind went straight to the worst. I did not realize until this week how hard it was for me to think of anything but the worst.

I became the person that apologized to the doctor for calling with bad results because, in my mind, I knew to expect them, but that it had to be hard for them to call and express them.

I became the person that could not NOT think the worst because I felt like all I knew was the worst.

I expected the worst.

A week out and a pathology report showed me that I do not need to live in constant fear of a storm.

As I reflect on the pre-2017 and post-2017 versions of myself, I have seen the sun, the rainbow in the sky, and the good to come.

Their life changed my expectations of life, changed the way I saw life; it changed me.

Now I am in my new season of life, the season I am calling No Uterus, New me.

Another new norm, but for the first time in a long time, the idea of a new normal is an exciting thought.

I am ready to live a life less afraid of people leaving and more prepared to let people in, to fight for those I love, and to be the loud, proud Irish-Croatian born and raised in the Southside who would instead ask herself why not instead of living in a constant worry of why.

If their life could change my expectations once, they can change again.

Their life changed my fears, and now what we’ve gone through has allowed me to live it fully.

Life changes. We change. The great part about life is that change is always happening, and we decide what we want to do with it.