Nancy Figueroa Writes

I've got 30 people--all family--coming to my house tomorrow...and I'm ready to go! I'm looking forward to seeing everyone and I'm not swearing under my breath, wondering whose stupid idea this was. Something is different this Christmas. The house is spotless, the presents wrapped and the baking waiting to be devoured. My sons have offered to come over early tomorrow to help, but there's nothing for them to do. Wish I could tell you what I've done differently this year, but I haven't got a clue. Please tell me I haven't forgotten something huge!!! Me, and my younger sisters, Lisa on Santa's lap. Four of my five sisters, my favourite brother and their families will all be here to help celebrate another Figueroa Family Christmas. The second youngest in the family, Lisa, lives in the Interior of B.C. and will not be joining us. She did, however, send a huge package of her baking for us to share. Don't tell my siblings, but I've already ...

Parents of children with uncontrolled seizures have many worries. But the biggest worry is: What will happen to my child when I'm dead? I'm so grateful my son has been seizure-free for four years--thanks to epilepsy surgery--and can now live on his own, but not everyone is as lucky. Many adults with uncontrolled seizures live with their aging parents. When my son was seizing 10 to 20 times a day I used to fantasize about a home in Toronto where he and other adults with epilepsy could live together like a family. My husband and I had to face facts, we wouldn't always be here for our son. And, we were only too aware that living alone is not safe for someone who suffers repeated seizures. Just imagine if my son fell in the midst of a seizure and hit his head in the shower, or had a seizure while frying bacon on the stove? Who would help him if he lived alone? Who would either make sure he recovered from the seizure or call 911? And so, I began to envision a lovely, big, old ...

If Ontario Premier Doug Ford had a disabled adult child living on social assistance, would he understand the dire need to make changes to the system? The maximum one can make on the Ontario Disability Support Program (ODSP) is $1,168 a month. How can anyone survive on this when the average rent for a one-bedroom apartment in Toronto is $2,020? Not to mention the additional costs of food, public transit, phone, clothes and other necessities. The rule of thumb used to be that accommodation should not exceed 30 percent of one's salary. That would mean someone on ODSP shouldn't spend more than $350 a month on rent. Does Doug know this? Those I know on ODSP try their hardest to get part time employment to supplement their income. It's not easy. Many disabled are underemployed and have increased roadblocks to employment. They should be rewarded for putting themselves out there, but instead the government penalizes them. If an ODSP recipient is fortunate enough to find part ...

This is the scariest time of the year--the time when I eat way too much candy! I hope this year will be different. We don't have any youngsters trick or treating, so I can't get into my kids treats. Yes, I'm one of those mothers who did that...don't tell my boys! Last year I thought I'd get smart and wait till Halloween before buying anything--thought I was so clever. Just as I was leaving to buy treats for the ghosts and goblins who'd soon be at our door, Richard told me he'd already bought everything. "You have?" I asked. "I don't see anything." "That's because I've hidden everything from you," he said. "I've got boxes of Mars Bars, Kit Kats, Smarties and Dairy Milk and bags of red and black licorice and a box of Swedish Berries. They're all stashed in the trunk of my car." "What?!" "I had to," he said. "Otherwise you'd eat it all." Finally, after 34...

Fifteen years ago today my Mother died. How is it possible I could be on this earth all those long years without her? Kathleen Elise Pietrie Figueroa -- "Kitty" to her parents, "Mom" to her seven children and "Darlingest" to our father -- was born in Kingston Jamaica in 1928. In 1949, at just 21 years of age, she left the warmth of her parents and the sunny skies of Jamaica to marry and begin life anew in cold Canada. Other than my father, who'd left Jamaica a few months earlier to establish them in Toronto, she knew no one. Mom in Jamaica in 1948. I still get teary when I read the letter her father, my grandfather, wrote June 20, 1949 shortly after her arrival in Toronto and just five days before she'd be married: Dear Kitty...I am looking forward to that letter of yours which will say, Daddy I don't like Toronto and will be home soon." Mom and Dad's marriage in The Toronto Daily Star! But such was not the case. Mom lo...

James's birthday is in June but he considers October 14 his re-birthing day. On October 14, 2014 he endured six hours of awake epilepsy surgery to remove a large portion of his left frontal brain. He has been seizure-free ever since. In his words: "It's like I'm only four years old." His positive attitude never ceases to amaze--and comfort--me. For twenty-six years he endured numerous seizures every day of his life. Not any more. Now, along with Easter, Christmas, Thanksgiving and Birthdays, October 14 is--and always will be--a date of celebration at our house. It's a day of thanksgiving for Jamie's brilliant and brave neurosurgeon at Toronto Western Hospital, Dr. Taufik Valiante. Dr. Valiante has changed not just James's life, but all of our lives. Thank God he devoted his life to neurosurgery. October 14 is also a day of gratitude for the Canadian health care system. Guess how much neurosurgery and 50 days post-op at Toronto Western and at Bridge...

I'm part of an online epilepsy support group that has members from all over the world. This morning I read a post from a Mom in New Zealand. Her young baby had just been diagnosed with seizures and was prescribed anti-epileptic medication. Tests had been done but so far there was no known cause for her baby's seizures. She wondered what life held in-store for her darling child. She wondered what her child's cognition would be like. She wondered what she should say to her other two children, both under the age of five. She was glad to know that because of this online site, she was not alone. She was not the only mother whose child was suffering with seizures. She sounded like me, 30 years ago with an infant seizing every day, plus two older children under the age of five. Where we differed, however, is that there was no online internet supports 30 years ago for me. There was no internet! I often felt I was the only mother on the planet struggling with an infant with medicall...

Fascinating research is being done in Ontario to find ways to improve the lives of people with epilepsy.  This work is being done through EpLink--The Epilepsy Research Program of the Ontario Brain Institute. A team at Toronto Western Hospital, is researching  the use of brain stimulation to help stop or prevent seizures. So far they've found it has been effective in stopping seizures in animals. I hope it has the same effect on humans. In another study, by a group at the Hospital for Sick Children, a computer-based program using brain-wave patterns  is being developed to predict seizure activity in those with drug-resistant epilepsy. How wonderful if an individual could be warned about an upcoming seizure. This would be life-changing for those who don't receive any warnings or auras about imminent seizures. Imagine walking across a road, and suddenly falling to the ground convulsing? With a warning an individual would know to lie down in a safe place, thus reducing th...

When James signed up to play Special Olympics softball he wasn't certain he'd be able to hold the bat, never mind hit the ball. He wasn't certain, either, how he'd catch the ball and throw it back to his teammates. After epilepsy surgery he lost the use of his right hand and right arm. In his customary style, though, he wasn't about to let this--or anything--stop him. With the help of his awesome coaches, Dave and Pauline, and their crew of George, Sue, Ann and Heidi he has acquired so many new skills. He has learned to wrap both hands around the bat and in so doing he often hits the ball out of the field. He has learned to catch the ball with his gloved left hand--then lickety-split--remove the glove and throw the ball--still with his left hand--to his team mates on base. I'm not really sure how he does it, but somehow it works. And always, he has Dave and the gang cheering him on. Thanks, Dave,  Pauline and Special Olympics coaches everywhere for improving t...

A few months ago we were asked to participate in a video for Eplink--The Epilepsy Research Program of the Ontario Brain Institute--about people who've had epilepsy surgery. Richard and I were eager to help out, but I wasn't sure James would be, as the interview was scheduled for June 19, his 30th birthday. "No problem," my generous son told me. "No better way to celebrate being 30 than by talking about being seizure-free." So, off we went to Toronto Western Hospital, the site of James's surgery, to be interviewed by Eplink's Dr. Amaya Singh. The focus at Eplink is to find new ways to diagnose, treat and improve the lives of people with drug-resistant epilepsy. It is a great organization and I love its vision: "A world without epilepsy." It was an interesting interview and Dr. Singh immediately put all of us at ease. As it concluded she said, "I know hearing your family's story will touch a lot of people."  The video has ...

If every child returning to school could learn just one thing, I hope they'd learn to be kind. Kind to fellow students, teachers, parents, siblings, neighbours, strangers and kind to themselves. If you aren't kind, what does it matter if  you've got great marks? Why can't this new school year be the beginning of the end of bullying? Wouldn't it be wonderful if no child were ever bullied again? I'd much rather my child learned kindness than math...okay, so I never liked math! Still, I hope every teacher will find those teachable moments to talk about kindness and be that one teacher every student remembers because she, or he, was the one that taught them to be kind. Don't make fun of the kid that's poor, shy, disabled or different. Invite them to play with you at recess, invite them to your birthday parties.                                                 ...

I hate the end of August. For this summer gal the labour day weekend is my signal that winter is fast approaching. The one thing that gets me through this weekend, is going to the Toronto International BuskerFest for Epilepsy. It always puts a smile on my face. The festival, at Woodbine Park in The Beach, showcases amazing fire-jugglers, sword-swallowers, magicians, ventriloquists, comedians, and musicians from all around the world. For kids, there is also a Family Fun Zone with face painting, circus academy, rides and a bouncy castle. It's a wonderful way to spend, what I call, the last weekend of summer. Best of all, all funds raised are used to help the more than 40,000 people in the Greater Toronto Area who have epilepsy. Admission to the park (1590 Lake Shore Blvd. East at Coxwell Ave) is by donation, with a suggestion of $5 per person and $10 for a family. In conjunction with BuskerFest, The Mac and Cheese Festival is also being held, with more than 20 different mac and c...

I can't believe it happened again. I saw a Facebook post asking if it's necessary to put something in someone's mouth when they're having a seizure. No! No! No! Do not put anything in their mouth and do not attempt to restrain the person. Do: Stay calm Time the seizure Loosen anything tight around the person's neck Keep the person safe until the seizure is over Clear the area of glass or anything that might hurt them Do not restrain the person Remember, most seizures last 30 seconds to two minutes If the seizure lasts more than five minutes, call 911 If the seizure ends and a new one starts, call 911 When the seizure ends, turn the person on their side Stay with them, they may be disoriented or confused  I'm so thankful to those in the past who witnessed my son having a seizure and who knew what to do, like the TTC driver who refused to leave his side, the kind neighbours and the unknown strangers who have called 911 and stayed with him until h...

There are so many thoughts running through my head.  I've been asked to speak with a small group of Epilepsy Toronto parents tomorrow evening. They are parents of children, from one to 16 years, who have epilepsy.  Katie, the amazing Director of Children and Youth Services, and also a social worker, has asked me to talk about our journey with James, about coping skills for parents and about the sibling experience.  I have so much to share with these parents--I know their pain. I've been where they are. I hope one day soon that their child will be where our child is now-- seizure-free. I don't, however, want their children to have to go through epilepsy surgery six times, and struggle trying one hideous drug after another. I want to wave a magic wand and let all their children--let all the children in the world--be seizure-free. That isn't too much to ask, is it? Until I find that wand, I'll share our stories, our hope, our pain and our triumphs. And, photos...

More than $125,000 was raised last night at The Amari Thompson Soiree for Epilepsy Toronto. It was a fabulous evening. The star of the show, Tristan Thompson, NBA superstar with the Cleveland Cavaliers, was--at 6 ft 10 in--easily the tallest person in the crowd. James went right up to him, shook hands and introduced himself. My job? To take photos. Luckily, James's two favourite Sick Kids's nurses, Irene and Anita, were also there. They also took photos of James meeting Tristan. Anita and Irene have been nurses to thousands of children with seizures; you couldn't ask for two more wonderful people. The setting for the soiree, the 17th Floor of the new Globe and Mail Centre on King Street, offered spectacular views of the city. The food, by Mark McEwan Catering was excellent, especially the chicken drumsticks and the risotto, served in lovely little dishes. It was a bit tricky, though, to hold the wine glass, the programme and the bowl of risotto without spilling everythi...

      My son  James loves basketball. Guess I should have known he’d agreed to go with me to Thursday’s Amari Thompson Soiree in support of Epilepsy Toronto. Amari’s big brother—NBA superstar, Tristan Thompson of the Cleveland Cavaliers—is honourary chairman of the evening. You bet, James wants to attend!      I’ve always thought Epilepsy Toronto and the epilepsy community in general, needed a strong, well-known personality to help raise awareness and funds for those with epilepsy and their families. Along came Tristan, thank goodness! The Canadian citizen, who grew up in Brampton, partnered with Epilepsy Toronto to host the soiree in honour of his 11-year-old brother, Amari. Like James, Amari has suffered seizures since birth.      Tristan, who calls Amari, “the greatest motivational force in my life,” acknowledges that not every family dealing with epilepsy has had his good fortune. For this reason he decided to do what...

           There are days when I must remind myself of all that is good in Toronto. This is difficult when it's ugly out there and evil lurks in unsuspected places, like The Danforth. All around me I hear cries for tougher gun control and increased funding for mental health, but I don't believe these things will change any time soon. And yet—in some small way—something has changed. Is it just my perception, or since the violence on The Danforth have we become more caring? It's as if someone is sprinkling fairy dust among us. Do you feel it?            I felt it in the gentle hand extended to me yesterday—on James’s moving day— by a woman and her young son who noticed I was carrying way too many things. They quickly stopped what they were doing. The son picked up my mop, the woman picked up my bucket and my bag of groceries and happily brought them to my car. I doubt I'll ever see those two people again, but th...

                      As a young girl my greatest loves were newspapers and books. I dreamed one day I’d be a newspaper reporter, and one day I’d write a book. At  21, I graduated with my degree in journalism and worked at newspapers in Collingwood, Barrie and Oshawa, but the book eluded me. Not any more. Four years ago I made time to follow my dream. In my little downstairs office I’d set my timer for 60 minutes and allow the words, the feelings and the memories to flow. With two 60-minute intervals a day, the words weren’t always pretty, but they were on the page. Today—following memoir writing classes at Ryerson, a graduate certificate in creative Writing from Humber College, working with an amazing editor, and countless hours of pouring my heart on the page—I’m ready to birth my 327-page baby. Seized—A Memoir of Epilepsy, Complications and Love , explores my journey with my son, James, who since birth has suff...

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