From the desk of a mom reflecting on a pregnancy surrounded by ALS two years later
Updated: Oct 20, 2022
As Ashton’s second birthday approaches, I remember those beginning feelings of pregnancy, terrified and not for the everyday pregnancy, parenting, or 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 taking a pregnancy test with Thor. I was terrified to take a test because I knew it would say pregnant, which scared me. I just got married six 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.
During our time in Boston, I refer to where Thor cooked in the oven because I moved there when I was eight weeks pregnant and moved back to Chicago when I was 35 weeks pregnant. 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, “oh baby bambino,” in Ton’s distinct 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. There were the typical weekly pictures with Thor, knowing down to the second how pregnant I was and 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 and eat popsicles in the pool, and the joy on his face during our morning facetime with Papa would make your heart melt. Ton was a fantastic dad but an even greater Papa. He was the type of man I felt 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, and always say yes to a chocolate shake. He was made to watch silly tv shows and weird YouTube channels and argue with a toddler about toys they both wanted on commercials.
Getting pregnant with Ashton did not come easy and took a long time. For months I would take a pregnancy test and hope for a positive; every month, I would throw the negative in the trash, angrier than the month before. I was getting to a mental point of accepting that I would only have one child, that we would be one and done.
Something felt different when we got home from a family vacation to Indiana Beach. 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 bright plus sign staring me in the face, something I had wanted for so long, but for some reason, I was still completely caught off guard.
At this point in our ALS journey, my dad was diagnosed seven months later and was using a walker regularly. We were starting to figure out the construction of my childhood home for his power wheelchair that he was in the process of getting fitted for, ordering, things were quickly becoming 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 could 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 and knew I wanted to do in my heart. Being able to lift, carry, and 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 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 pretended that, for one moment, I did not notice the processing going on during that week’s visit.
Anyone who knows pregnant me knows I have a tough time with pregnancy. I am sick from when 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 tough talks, and we knew that he would try his hardest to stay alive to meet Ashton, but that meant that his time would be minimal afterward. I struggled for a long time, which would be easie, than losing my dad while pregnant or with a newborn, and that is not something I wish upon anyone.
There were no weekly pictures; there was not a countdown to my scheduled C-Section; there was this unspoken idea of knowing how far along I was without remembering 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; we saved pictures 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?
Ton meeting Ashton was heartbreaking. He could barely keep his head up. He tried to use all the 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. I will never forget the day I brought Ashton to meet my dad, and I still get a rush of emotions as I remember how angry I was at ALS when I left that night.
When we left that night, I knew that it was 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 would I 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.
The family was always important growing up, but you see a different side of the family when life hits you with a disaster and a terminal disease. We were not the only ones losing someone; everyone who knew Ton lost something when he was diagnosed, and everyone who knew him lost something when he passed away, but we all did not lose each other. We were not alone, and people surrounded us, wanting to help, waiting to help, and now was the time to accept it finally.
The night before my dad passed away, Ashton was held by the family, fed by the family, and not a peep of a cry was heard from him all night. It was like he knew his mom needed precisely 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 I had the moment I had hoped for a split second. My dad looked so peaceful laying in bed, and Ashton, at only two weeks old, lay there on his chest as they slept together for a few moments as life should have been. Ton and Ash should have naps on the couch together; they should have had moments of peacefulness lying together, and they did for a small moment.
Ton passed away the morning of March 17th, 2019, and little did I know then 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. 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 about the weird contact names listed on my dad’s phone. It was the first time I felt like I could breathe and laugh again and mean it.
I thought being a parent during one of the worst times of being a daughter would be hard, and boy, I did not know how hard that would be, but what I forgot about was how extra special it now made each day. I could start to giggle as I would tell stories that Papa would suggest; I could make Papa toast (toast with butter and cinnamon sugar) again, talk about their Papa with a genuine smile on my face knowing that he would never be gone. I could laugh as I would catch myself whistling as I cooked dinner, something he did so many times that would drive me crazy growing up. I became the parent who used weird words to explain an everyday object and had the child roll their eyes instead of being the child. I was becoming the parent that I wanted to be, the parent I for so long looked up to, the one who could laugh at themselves at the moment and did not care that their child was arguing with them about the simple phase you were purposely mispronouncing because you knew it was driving them crazy.
I now look at my two boys and think that Ton will always be here. I feared life would be like without my dad, and I forgot that he raised me, taught me how to live, and fought. I look at my two boys, turning that into fighting for others like their Papa. Fighting for the “bad bug,” helping other families make sense of the confusion of three little letters.
Growing a life while watching my dad start to lose his life taught me to live each day at that moment and not wait for what I could have, should have. We only have one chance at this crazy thing called life, and you better believe I will fight harder to make it count. I will