For many families, Mother’s Day is a time of celebration and joy. For others, it can be a time of sadness and reflection when there is an empty seat at a once-filled dinner table. For Anna Acheson, Sunday will be the first Mother’s Day she spends without her mother, Margaret.

After participating in the 2016 WALK for ALS, Margaret and Anna immediately began making plans for this year’s event. Margaret had been diagnosed with ALS in June of 2015 and completed the walk for the first time last year. Anna recalls that her mother was still fully mobile on the day of her walk, and was thrilled to raise awareness for ALS and get the whole family together. Margaret passed away in July 2016, just one year after her ALS diagnosis, due to surgical complications. Now, Anna continues her legacy.

“She was very much a queen of her community,” said Anna as she reflected on her mother’s impact. “She was fabulous, full of life, loved life and never missed a party. We didn’t just lose a mom, we lost a lot.”
Before Margaret’s diagnosis, Anna joked that they had a typical mother-daughter relationship: they fought, they loved, they laughed and they cried. As many people and families living with ALS may understand, Margaret’s diagnosis changed a lot for her family.

Margaret with her family and ALS Canada Regional Manager, Joanna Oachis

“I wanted to protect her,” Anna shared. “I wanted to sacrifice my own self for her, just so she could live a little longer.”

The mobility limitations that can come with an ALS diagnosis are easily visible. What is more difficult to grasp is the shifting roles that inevitably occur with the diagnosis. Mothers raise, nurture and protect us – but what happens when ALS makes the child the nurturer and protector?

Anna emphasizes the importance of relying on one another for support.

“We cannot be strangers in this disease,” she urges. “We have to all be together. After someone passes away, there is a void you cannot fill and you don’t know who to go to and cry with.”

The WALK for ALS is just one way in which members of the ALS community can find support, honour the legacy of their loved ones and rally to make ALS a treatable, not terminal disease. Anna reflected that she joined last year’s Kitchener/Waterloo WALK for ALS as a participant just two weeks before the event, stepping in at the last minute to help secure donations and surprising herself by the amount she was able to raise. She signed up for the WALK with her mother, but many family members showed up on the day to surprise them.

“It gave me excitement and drive,” she affirmed. “I thought, ‘let’s do this, let’s raise the money for everyone.’”
Even now that her mother can no longer be there to participate, Anna is honouring her memory by continuing to raise money for the Kitchener-Waterloo WALK for ALS on June 10.

“Just because someone is gone, doesn’t mean you should stop.”

When asked about her plans this Mother’s Day, Anna reminisced fondly about her mother’s zest for life.

“We always celebrated Mother’s Day on my deck, but mom always complained that the deck had to feel more like a party… so we renovated it. Now we call it ‘Margaret’s Deck.’ Mom would want us to have a party.”

On Mother’s Day and every day, Anna honours her mother by being as “good” as possible. She reiterates that although she sometimes wants to say no due to her grief, she honours Margaret by being as giving as her mother was when she was alive. “Everybody needs somebody.”

Anna emphasizes the importance of pushing forward, even after our loved ones are gone. “We are getting closer and closer every day to finding a cure, but we need to rally together.”

 

ALS Canada: offering support and services every step of the way
ALS Canada assists people and families like Anna and Margaret in navigating their journey. Regional Managers offer home visits to discuss individual and family needs, provide information and education, and help to connect to other healthcare providers and community supports. They run support groups for people living with ALS as well as caregivers, something Anna says was imperative in helping her cope with her mother’s diagnosis. ALS Canada also facilitates equipment loans and funding assistance, such as providing funding for Margaret’s communication device. You must be registered with ALS Canada to receive support from a Regional Manager and other ALS Canada services. As a charitable organization that receives no government funding, we are grateful to our donors who make it possible for ALS Canada to offer these services.

Posted in: Stories