From a very young age, my grandfather and I had a special connection. I remember as a young girl, he and my grandmother would go to Portugal for six months at a time. When they returned, I refused to leave his side and would spend hours just staring up at him, thinking how lucky I was to have him as a grandfather.

The moments we shared are some that I’ll never forget. Whether he was picking me up from school and asking about my day, playing practical jokes on me, or sharing one of his many life lessons, the time I spent with him was so precious to me – and I continue to cherish these memories dearly.

The day my grandfather Antonio was diagnosed with ALS will be forever engrained in my memory. I knew of the disease, but I felt far removed from it and never thought it would happen to a man as active and energetic as he was. His symptoms started with muscle spasms and twitching in his arms and legs that gradually spread throughout his body. Within months of his diagnosis, he struggled to swallow and speak. He handled the progression of the disease and the loss of mobility with stoicism; I, on the other hand, didn’t cope quite as gracefully.

I cried for weeks after his diagnosis and struggled to see a light at the end of the dark tunnel. ALS has a funny way of making you realize how deeply you love someone, when suddenly their presence in your life is uncertain beyond tomorrow.

I decided that I needed to be there for him the way he had always been there for me growing up. I helped my family with the fundamentals, like feeding him, lifting him up off the couch, going for walks with him in his scooter, and driving him to his specialist appointments a couple hours away. However, the most important role I played was that of emotional support. Near the end of his journey with ALS, he lost the ability to speak and could move very little. I knew it exhausted him to try and communicate, so on many days we would just sit in silence, watching the birds that he loved so much, holding hands and relishing the moments we were given together.

My grandfather loved to dance, which made an ALS diagnosis all the more difficult because he could no longer do what brought him so much joy. Even when he could no longer stand on his own, I remember lifting him up out of his chair so we could dance with one another like we used to when I was a little girl. For caregivers, seizing today means finding a way to bring joy to the ones you love.

When he passed away, a part of me left with him. I didn’t know how I would recover from such a loss and move forward in a positive way. The WALKs for ALS helped my family and I focus our grief in a constructive direction. My grandfather was there for the first WALK we attended, even cutting the ribbon at the 2013 opening ceremonies in Kitchener/Waterloo. We have continued to walk as a family in his honour every year since.

Three years after his death, an opportunity presented itself to work as an Intern on the Marketing and Communications team at ALS Canada. I knew that the opportunity was a sign from my grandfather and that this was a way for me to honour his legacy. That is where I am today; using his memory for inspiration in everything I do. The irreplaceable relationship I had with him was a blessing and reason enough for me to smile every day. I hope to be able to use my experience to make a difference in the ALS community. This is how I seize today – how will you?

ALS Canada was instrumental in helping my grandfather make the most of his remaining days. Through their equipment program he was able to access funding for an iPad to assist with communication (which he ended up using to take selfies) and a scooter from the loan program to help his mobility (which he used as his personal Harley Davidson). Our Regional Manager, Joanna Oachis, showed him endless compassion and support. My family remembers her support fondly.

During the month of June for ALS Awareness Month, we will be sharing the stories of people living with and affected by ALS who have chosen to seize each day in whatever way they can. You can also share your own stories and reflections on Facebook, Twitter and Instagram and hashtag #SeizeTodayALS.

Posted in: Stories