Updated: Mar 16
It has been a joke with my family that I came out of the womb talking. I am a people person and someone who could have a conversation with a wall and find myself entertained. Everyone who has ever met me knows this, anyone who has ever met my children knows that karma has come full force and got me with two chatty children. But, around this time of year I struggle to find the words with how I am feeling, where my mind is wandering to, as each day seems to way heavier on my heart.
When I share my story most of the time the person’s response is, “I don’t know how you did it”, and honestly me either, but then again does anyone ever know how they get through those times? We can all look back at a tough point in our life and wonder how we did it, what got us through it, wondering and questioning how we are where we are today. It is crazy what we unintentionally do to survive.
After going through the newborn phase, you hear a million and one times “it’s just a phase” or “this phase will end” and every time your rhythm is thrown as a parent you are constantly reminded that one day what is hard will not be so hard anymore.
For the last few months of my dad’s life my mom barely slept. A couple hours here, a few minutes there, to then wake up and go into the city and work full time. What a lot of people do not understand about a terminal illness is that there are people that are stuck surviving that illness. There are family members that are left after the funeral, after the machines have been picked up, after the death certificate has been signed. Family members that are left still need to survive after life with a terminal disease. My mom became a widow at 59 and not only needed to have the insurance that helped benefit my dad during his illness, but she also needed to survive after.
My mom was not the one that was diagnosed but she was the one who was left to suffer with the terminal disease. The one who had to check a new box in life, who needed to continue working even though her husband was dying, because “this phase will end” and she needed to be okay after the end.
When Ashton was born, and we packed up our stuff to stay with my parents my mom and I were both up every couple of hours. We were both feeding and helping our loved one and making sure they were comfortable before her and I would close our eyes until they needed us again. I remember sitting up one night thinking that a time will come where Ashton will sleep through the night. My “phase” has a happy ending, a quiet household with two children sleeping through the night and a mom who gets to enjoy uninterrupted sleep without bottles and diaper changes.
My mom’s “phase” ends when my dad’s life ends. She does not get to have that peaceful night sleep uninterrupted with her husband sleeping safely and soundly through the night with her. One day her “phase” will end, but the unknown of the new phase is also just as scary.
My heart starts to get heavy as I remember those days and those feelings and once again struggle to find the words to articulate knowing the end is near. But as we start to approach year two without Ton my heavy heart is “just a phase”.
I am thankful to have moment of sadness and moments of sorrow because it reminds me that what I am doing is right, what I am fighting for is worth it, my happy days and happy moments with Ton will always outweigh the sad days and that is a phase that I will never let end. The years between the last time and present day will continue to get further apart, the sound of his voice might get weaker in my memory, but the best part of being Ton’s daughter and having Ton’s grandsons’ is that a piece of Ton will continue. One day ALS will have a cure and on that day, life will not be so hard anymore, until then you will continue to find me fighting in his memory and fighting for those whose phases will continue to end, and even more for those who are left to survive life after a terminal disease.