Be brave little soldier
As we start another year off with a series of seizures, I shall keep the mantra, “Be brave little soldier” in my head. Last year was a year of challenges and tested my mettle more than any other I can remember. Even still, my head swims with worry, and nervous anticipation for the next set of challenges; the next mountain to climb. This year, I will remind myself over and again to be brave.
Over the course of the past few months, we advocated for our little girl within the school system so that she could attend kindergarten with her peers, in a safe, and inclusive environment. It was immaterial to us when she started school, as long as all the supports were in place to ensure her safety and to ensure that she would be just as loved and cared for as she has always been at home, and in daycare. We had success. It was a victory for her and a victory for us. To continue with this theme of advocacy, I also accompanied the amazing people representing epilepsy support groups across the province at Queens Park for Epilepsy Action Day to share Pepper’s story and the challenges our family has faced getting Pepper into school. We spoke with MPP’s about the need for legislation to ensure that students with epilepsy are not turned away from the class because of red tape over the administration of life-saving medication. I joined together with advocates across the province to speak on behalf of those living with epilepsy, and the families who care for them, who sometimes feel abandoned by the system. It was empowering and enlightening.
October was a month of advocacy and victories.
Riding a wave of courage and bravery, my husband and I took November by storm and bought a house. It was more out of necessity than bravery though, as our current house is neither accessible, nor is it safe for a child with limited physical abilities. The thought of carrying Pepper up and down several curvy and potentially dangerous flights of stairs for the next few years, months, even days, was both unappealing and frightening. So, we checked the listings, saw a house and went and bought it. Gah! Just jump right in, do not check water, just jump! I barely had time to really think about this major decision, and we were signing the paperwork. A move date has not been set, as we have still yet to sell our current place of residence, but there is a time and a place for everything. One step at a time.
Christmas this year was very very low key as we have had no less than 120 showings of our house in a span of 4 weeks. Within that time, we have been living out of our cars, traveling with all of Pepper’s extensive gear, and our paltry possessions, with the hopes that one of these tire-kicking busy-bodies will just buy the place for heaven’s sake! It’s been hell. Pure hell. I wish it upon no one. However, during that time, we had a chance to visit at our new house and be greeted by a special visitor: Santa Claus himself! He came and blessed our family with a visit and a sing along, and it was nothing short of Christmas magic. We are truly blessed. To honor Santa’s visit, we decided it only made sense to open our gifts at the new house, with limited fan fare, but all of us together, happy in each other’s company. We did not send out any cards this year. Not a single one. Though we have plans to send out post-season hellos to all our friends and family. If I don’t have your address, what are you waiting for? Send me an email pronto!
So as we look forward to a new house, with a new start in a new neighborhood, you ask me, “Strange lady, what does any of this have to do with being brave?”. Well my friend, to that I say, it is a strong core belief of mine, that nothing comes easy. I know this from my own upbringing: from my parents and my in-laws who left war-torn countries to come here, from illness knocking the wind out of my father’s sails in the prime of his life, from being bullied in school, from learning through trial and error who my true friends are, where my love comes from and where my heart belongs. But there is never a shortage of work to be done, and never a shortage of fear at the table: fear for our new house (will it be safe? will we be accepted? will school be ok for the kids?); fear over Pepper’s illness (will we lose her to a seizure? or worse SUDEP? will she continue to have seizures? will she improve? will she get worse?); fear of losing strength (will the stress make us ill? will we survive the stress as a family? as a couple?, will we burn out?); fear about the world we now live in (is it safe to go anywhere?). Fear fear fear. This fear is overwhelming. But it can also be motivating. For Pepper, and for the future: Be brave little soldier. Battle on!