From the desk of a mom reflecting on a pregnancy surrounded by ALS two years later

Updated: Mar 16

As Ashton’s second birthday starts to approach, I find myself reflecting back and remembering those beginning feelings of pregnancy, terrified and not for the everyday pregnancy, parenting, sickness reasons that you expect to come with a positive pregnancy test. But let me take you all back to the beginning before diving into the feeling of what felt like the countdown to my dad’s death.

I felt it in my bones for days before I took a pregnancy test with Thor. I was terrified to take a test because I knew in my heart it was going to say pregnant and that scared me. I just got married 6 months ago, we just agreed to move to Boston, I was 24 years old. Every emotion went through my mind, but the feeling of love and joy always won in my head, it always won in my heart.

I remember telling Ton I was pregnant, and he looked at the picture frame we used to announce the good news to my parents and instantly he said “ohhh baby bambino” in Ton’s typical voice which just made everything so much better at any moment of my life. The calmness and joy in his voice made me feel that everything would be okay. Our time in Boston I like to refer to where Thor cooked in the oven because I moved there when I was 8 weeks pregnant and moved back to Chicago when I was 35 weeks pregnant. With Thor there was the typical weekly pictures, knowing down to the second how pregnant I was, what fruit size he was that week. I would send screenshots of my What To Expect When You’re Expecting App to my parents on Friday mornings so we could all read about what was happening.

My family came for Christmas and helped us pack up as Ton and I stuck around for one last appointment before a 15-hour trek back to Illinois. We rock ‘n rolled the whole way home with his weird stories, his strange advice, and nicknames for people that wouldn’t make sense even if you were there for the joke that supposedly gave the person the nickname in the first place.

Thor being born gave my dad life. He became a child again as he would roll on the floor, eat popsicles in pool, and the joy on his face during our morning facetimes with Papa would just make your heart melt. Ton was an amazing dad, but an even greater Papa. He was the type of man that I felt like should have been a Papa his whole life, it was what he was meant to do...spoil with no consequences, not worry about what the rules say about nap time, always say yes to a chocolate shake. He was made to watch silly tv shows, and weird YouTube channels, and to argue with a toddler about toys they both wanted on commercials.

Getting pregnant with Ashton did not come easy and took a long time. I was just getting to a mental point of accepting that I was only going to have one child, that we would be one and done. For months I would take a pregnancy test and hope and hope for a positive and every month I would throw the negative in the trash angrier than the month before.

When we got home from a family vacation to Indiana Beach something felt different. I just felt off and went upstairs and figured I would take a test and throw it away just like I had for so many months before, except this test time it was different. Suddenly, I had a very vibrate plus sign staring me in the face, something I wanted for so long, but for some reason was still completely caught off guard.

At this point in our ALS journey my dad was 7 months passed being diagnosed, he was using a walker regularly, we were starting to figure out construction my childhood home for his power wheelchair that he was in the process for getting fitted for, ordering, and that was starting to become a NEED over a WANT.

We were at a point of our journey with transfer boards, being lifted, carrying from one seat to another and that was something that I was able to do, something I liked to do, something I now could no longer do. Taking care of Ton came second nature to me, something I never questioned, something I knew in my heart I wanted to do. Being able to lift, carry, hold Ton gave me a split second in time where we would hug tighter than we ever have, a moment where the world would stop around us and that I knew he was okay.

Being pregnant changed all of that, no more lifting, no more carrying and transferring, no more wine in the bathtub as I pretend that for one moment that I did not notice the processing going on during that week’s visit.

Anyone who knows pregnant me knows I have an extremely hard time with pregnancy. I am sick from the moment the test is positive until I am in the recovery room. I also did not know how to be both a daughter and a parent in a moment of such weakness with a parent dying of a terminal disease, but that will be a story for another day.

Ton and I had hard talks and we knew that he was going to try his hardest to stay alive to meet Ashton, but that meant that his time would be extremely limited afterwards. I struggled for a longtime on which would be easier, losing my dad while pregnant or with a newborn and that is not something, I wish upon anyone.

With Ashton there were not weekly pictures, there was not a countdown to my scheduled C-Section, there was kind of this unspoken idea of knowing how far along I was without remember how much time was left. My stomach grew larger as Ton grew weaker. I was in my third trimester while my mom, brother and I planned my dad’s funeral, as we saved pictures that we knew we would use as a slide show, finding quotes to explain someone who was still living but did not have much time left on earth.

Ashton was born on February 25th, he was the reason my dad fought so hard to live and now he was here so what did that mean in the time I had left with him?

I will never forget the day I brought Ashton to meet my dad and still get a rush of emotions as I remember how angry I was at ALS when I left that night. Ton meeting Ashton was heartbreaking. He could barely keep his head up, he tried to use all his strength that he had left to smile but his eyes would tell you how done he was, how his battle was over, and this was the last turn in the race.

When we left that night, I knew that was the end, the end as we knew it with Ton. My fear turned into anger as I brought my 5-day old baby back home knowing I needed to pack up my family and get ready to say goodbye to someone I was far from ready to leave. How was I going to explain everything to my 4-year-old? How was I going to handle being a parent in a moment of such weakness? How? Why? Why did I need to figure this all out at 29-years-old? I was angry.

Family was always important growing up, but you really see such a different side of family when life hits you with a disaster and a terminal disease. We were not alone, and people surrounded us wanting to help, waiting to help and now was the time to finally accept it. We were not the only ones losing someone, everyone who knew Ton lost something when he was diagnosed, everyone who knew him lost something when he passed away, but what we all did not lose was each other.

The night before my dad passed away Ashton was held by family, fed by family, and not a peep of a cry was heard from him all night long. It was like he knew his mom needed exactly that; he was comforted, and fed and gave me the time I needed that night to be a daughter. My aunt laid Ashton on my dad’s chest and for a split second I had the moment that I had hoped for. My dad looked so peaceful laying in bed and Ashton at only two weeks old laid there on his chest as they slept together for a few moments as life should have been. Ton and Ash should have had naps on the couch together, they should have had moments of peacefulness laying together and for a small moment in time they did.

Ton passed away the morning of March 17th, 2019 and little did I know at that time that my story with ALS was far from over.

Is it strange to say that his wake was such a great one? I know, I know how weird right. But, for two days our family was surrounded by a room full of people who loved my dad as much as we did. We heard story after story of the dorky goofy things he would do with friends and family growing up. We heard stories about work and laughed with truck drivers of the weird contact names that were listed in my dad’s phone. It was the first time in years that I felt like I could breathe, that I could laugh again and mean it.