A Lenten message from a mother

By 
  • March 7, 2013

March, always a special month, is set to be one to remember this year. Forever a part of Lent and leading up to the holiest days of the year, March can also be a tease for Canadians: warm spring sunshine on the face one day followed by snow and sleet the next.

The biggest news this March will undoubtedly be the election of a new pope. Pope Benedict’s selfless decision to step down has certainly opened a new chapter in the life of the Church, including possibly the first Pontiff from Africa, North America or elsewhere.

Other news closer to home, for baseball fans like me at any rate, will be about the Toronto Blue Jays spring training after all the trades, signings and improvements over the winter for Canada’s Major League ball club. Indeed, I just returned from my first trip to Dunedin to see the Blue Jays spring training.

Always on my bucket list, it was extra special being there with my family and soaking up the sun, listening to the fans’ wisecracks in the intimate little 5,700-seat ballpark and just hoping this team can be as good on the field as it is on paper.

The whole family went to a Jays game and then the next day my wife and daughter went shopping while my son and I went to another game on March 1. It was so relaxing just sitting there watching the Jays squeak out a win over the Rays.

If you’ve been to spring training, you know the feeling: it’s as if a smile is painted on your face the entire time you’re at the ballpark.

The following day, an email from a Register reader, the subject of which was unrelated to baseball, made me relive that day at the ballpark and make me feel even more blessed.

Guida Clozza wrote to tell me one of my columns gave her the idea to rent a local arena for her husband on his recent retirement so that he and his pals could have a “boys night out” consisting of hockey and beers and chicken wings with no wives allowed.

But the real reason she wrote was to ask whether I could help her promote the fact that March is Epilepsy Awareness month and March 26th is “Purple Day for Epilepsy”, when people in countries around the world are invited to wear purple and host events in support of epilepsy awareness.

There are lots of worthy causes and Guida’s note really struck me. Her 20-year-old daughter, Daniela, has Dravet Syndrome, a rare and catastrophic form of epilepsy.

Daniela has been living with the daily challenges of her seizure disorder since three months of age when her mother found her in her crib near death, lying limp, unresponsive and unconscious. Over the course of her 20 years, Daniela has experienced thousands of seizures and she and her family live with the fear of increased risk of SUDEP (Sudden Unexplained Death in Epilepsy).

In her note and a blog article she penned, Guida’s love — a mother’s love — jumps from the computer screen. She talks of countless visits to hospital emergency rooms, numerous meetings with teachers explaining her daughter’s special needs, fighting to get the proper medications into Canada and so much more.

“At first we tried to be a ‘normal’ family but ‘our family normal’ was so much different than other families,” Guida writes, adding that Dravet has taken its toll on the entire family, but especially her daughter.

“As Daniela moves into the future as a young adult, only time will tell what it will hold for her but for sure my husband and I will be there to support her every step of her journey.”

Until getting her note, I had never heard of Dravet. But I’ve since checked out www.dravet.ca and elsewhere on the web about the rare condition. According to the Dravet Foundation: “Unless a cure or better treatments for Dravet syndrome and related epilepsies are found, individuals with these disorders face a diminished quality of life.

Current treatment options are extremely limited and the prognosis for these children is poor. The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.”

We all have crosses to bear, but some are heavier than others. And looking back, enjoying that ballgame with my healthy teenage son, it sure was an eye-opening email to receive — especially during Lent — from Guida.

(Brehl is a writer in Port Credit, Ont. and can be reached at bob@ abc2.ca.)

 

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