Drive

    Every once in a while I am ashamed of my species. Actually that happens quite often but that's a rant for another day. One of our daughters is learning to drive which means that my husband and I are being driven around our neighbourhood as often as possible by a new but enthusiastic and careful driver. I am saddened to report the number of times that she has been tailgated and/or sworn at for doing the speed limit. We have an L on our car which means that a learning driver is operating the vehicle. We live in a rural area which is close to a busy suburb but relatively quiet. The speed limit is 60 km per hour and she is going 60 or slightly over. Did I mention that we have an L on our car? I am shocked that people would take the time to pull around the vehicle, roll down the window and yell "F#&k you!" to a teenager while she is attempting this new, difficult and potentially dangerous task. I really am appalled.
    The driving courtesy that we experienced in places like Australia and Scotland was so exceptional. My husband felt like a new driver, driving an unfamiliar car on new roads, on the opposite side of the street in the seemingly wrong side of the car. But people were kind, courteous and patient, no matter how many times that we went around the roundabout. Why does it seem as if Canadian drivers are getting ruder and more impatient? Maybe our city is getting more crowded and our roads busier. Or perhaps I am just getting to be an old lady, one embarrassed by human beings who are giving the rest of us a bad name....

Confidence

     One of the regrets I have is that we did not know about Special Olympics or Challenger Baseball until our daughter was well into high school. These programs have been such a boost to our daughter's well-being: improved motor skills, fresh air and exercise, expanded social circles and the confidence acquired by learning to play sports such as baseball and basketball. I had no idea that the Special Olympics program included such a wide variety of sports and that they welcomed athletes of such varying abilities. These include bowling, swimming, gymnastics and power lifting to name just a few. The only prerequisite is a desire to play and a disability, whatever that may be. The wide age range of athletes in both programs allows my daughter to be friends with people older and younger than herself. She has the opportunity to improve her skills in a safe and caring environment without judgement. For example, seizures are common amongst athletes in both these programs and are handled with care for the health and dignity of the person.
     Volunteers make these programs what they are. The coaches are usually parents and these dads and mums are incredible. They give generously of their time and talents to encourage, teach and foster respect amongst all the athletes and coaches. The young people who volunteer in these programs are sometimes siblings of the various team-mates, sometimes not, and they too are amazing. They also give of their time and energy to assist either on an individual basis or as team helpers. This experience also adds to their skill set and looks great on their resume. And they have fun. We all have fun!
     I regret not knowing about these wonderful programs for kids with intellectual and/or physical disabilities sooner. As a parent I am hugely grateful for them and know that our daughter's life has been immeasurably positively impacted by them. Thank you all!

Move

     It's a chilly, cold night tonight and the yip-yipping of the coyotes, the smell and orange glow of the fire pit and the jewel-like sparkle of a million stars overhead belie the fact that I am in my own back yard. Ten minutes away is downtown White Rock. Not a bustling metropolis by any means but a nice place to live with beaches, fish and chip shops, parks and beautiful places to walk.
     Our property is a disorganized sprawl of five acres with giant evergreens and sporadic beds of our favourite perennials. Our home was once a barn and it's an interesting octagonal building of three stories with a salmon stream running out back and a couple of well-used ponds. Ducks love this spot. We have built raised beds for vegetables and we have our very own orchard with cherry and apple trees out front. Our taxes are kept down by raising chickens and selling their eggs. We have lived here for over fifteen years and they have been happy ones. Our children have played here, ridden horses here and had some wonderful birthday parties here. More recently our eldest ran her own sunflower stand all summer long. And my carpenter husband's love of wood in all it's many forms is here for all to see. Yes, there is wood everywhere. Everywhere.
     As much as we love this place, we might be looking at making a move. Our girls are at the age when it is important to develop some independence. Out here in the country there are no buses running and that can be isolating. Of course there's Mama's Taxi but that doesn't run always. Anyway, we are ready to see which way the wind blows: happy to stay, happy to go....either way, we'll make it work.

Legacy

      Almost six months after their beloved son was killed, his parents were successful in their pledge to change the intersection where the accident occurred. The vote by the Council of Government in San Luis Obispo was unanimous! For the most difficult six months of this family's life, they have worked tirelessly, endlessly, courageously to make sure that another son or daughter did not die where their cherished child died. This involved untold hours of flights back and forth, meetings, petitions, posts, phone calls and letters, with broken hearts and nights unslept, to try to fix an intersection in another state, fifteen hundred miles away. The passion and energy this must have taken cannot be imagined, at least by me. At a time when most people would want to stay in the safety of their homes mourning their loss, this family was out there making sure their voices were heard, that their son was remembered. I am in awe of them. Most people could not rouse the strength let alone the courage that this undertaking would require. But this is their son's legacy: love for family, for friends, for community, for humanity. Jordan's legacy is love.

Today is Purple Day!

Joy

     Spring cleaning is what they call it, when you go through every drawer, every cupboard, every shelf. What precipitated this was my coming across a program on Netflix called  "Tidying Up with Marie Kondo". Tidying up is nowhere near what happens on this show. People who have let their stuff get the better of them end up piling all their clothes on their bed and picking up each item of clothing and asking themselves the question: "Does it spark joy?" If "yes", then it is kept, if the answer is "no", then it is thanked for its service and recycled. And that is just their clothing. Similar actions happen to all their possessions until order is restored.
     I did something like that while my husband and daughter were away. And everywhere I went I found photos of our nephew who was killed last Thanksgiving. In piles of paper to be filed, in packages of photos to be organized, in cards and letters read but not put away, in drawers and behind magnets he was there, a testament to the faithfulness of his mother who mailed these photos of their son and daughter every time a new one was taken. They usually spent time on our fridge until a replacement arrived. These pictures were mailed from across the country with a parent's pride and with love to all of us who know them well, who call them family.
     Finding these photos was particularly poignant as our nephew would have just celebrated his nineteenth birthday this month. The actual day was marked by a birthday party at his graveside complete with red and black balloons with notes written on them, released to the heavens. There were tears, laughter and singing: "...Happy Birthday dear Jordan....".  It is a testament to the generosity of his family that they have worked tirelessly to close the intersection, that is in another state over fifteen hundred miles away, where their son was killed. It is a testament to their faithfulness that they continue to celebrate their boy, honouring him and his life by making new memories and remembering him with joy.

Two

    

     Now that our daughter is officially over two years seizure free, we settle into a more relaxed routine, epilepsy wise anyway. I know that there are no guarantees in life; the death of our beloved nephew last fall has bitterly reminded us all of that. I suppose that she could have a seizure tomorrow. The brain is unknowable in so many ways. Marcelo Gleiser recently wrote, "The fact that the workings of the brain remain mysterious is not due to some immaterial entity but to our own difficulty of understanding its complexity." 

     An interesting development in our daughter's diagnosis is that through genetic testing she was found to have a genetic mutation in her GABA (gamma-amino butyric acid) signalling, which is the principal inhibitory mechanism in the central nervous system. This mutation is more commonly found in childhood epilepsy which gives us reason to hope that our daughter has grown out of her epileptic seizures. Her father and I are undergoing the same testing to see if we have any similar differences.

     We are typical I guess in our need to have answers to the question "why". Nothing is changed by having this knowledge but I do believe that information is power and can help us claim some degree of control in a seemingly uncontrollable situation. Surprisingly, some of the advances made in science make us more aware of what we don't know. Maybe that's what keeps it all so exciting!?

     Anyway our daughter's smile says it all: two years without injury, fear, trips to the hospital by ambulance; two years without headaches, bruises, embarrassment. Instead: two years of hope, independence, confidence, growth and of course, grief; two years of living.