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.

Proud

     I am so proud of the steps our daughter has taken towards independence this past year. As she is a young adult with epilepsy and Non-verbal Learning Disorder, I think that they are note-worthy particularly as they all occurred in a relatively short span of time. Here's what I've seen:
- Becoming seizure free. Our prayers were answered or our daughter outgrew her epilepsy or the medications started to work but none of that would be possible without our daughter looking after herself, taking her meds, getting lots of sleep, eating right and staying away from drugs and alcohol.
- Finding her passion. Our daughter tried hard in her over-year to work out what she wanted to do with her time. Figuring that out is not easy, ask any young person, typical or not. It can be a struggle. For her it seemed to be a result of letting herself be open to possibilities.
- Following through. Once she realized that she wanted to work with plants and flowers, she worked hard in our garden to sow, weed and water an amazing array of sunflowers that blew a lot of us away. They were astonishing! The sun, rich soil and lots of water did their share too of course but the results were incredible.
- More follow through. As many folks know it is difficult for disabled people to find work. A partnership with WorkBC helped her immensely. With their assistance with resume, job hunting and interview skills she was able to find the perfect employment. The greenhouse that she works at is friendly, inclusive, encouraging, right around the corner and she loves it!
- Looking around. While we were in a big box store, I was glad to see that our daughter had found the product she wanted, navigated through the aisles, got in line and paid for it herself, without my input, direction or support while I stood in a seemingly interminable lineup in Customer Service (a contradiction in terms if ever there was one). In an environment that can be overwhelming for her, I was thoroughly impressed.
- Leaning in. I noticed our daughter giving a hug and some words of encouragement to a fellow Special Olympics team member whose dad had died two days before Christmas. I was proud to see her as a positive role model to other disabled athletes, prouder still as a mother to witness her empathy and compassion, qualities that do not always come easy.
     More than anything, I have seen our daughter become more mature, more willing to try and to learn, more open to change and the possibilities that change presents. She has always been my hero but now I also see her as an adult person, admirable and able. Doors are opening and she is saying yes!

Fees

   

     Back in the summer our eldest daughter was sent a letter from her bank advising her that after her nineteenth birthday, her chequing account would no longer be without a monthly fee; the rationale being that she was no longer eligible for a youth or student account and so her bank would now be charging her on a monthly basis. We met with our friendly neighbourhood bank rep who explained what her options would be once that birthday came and went. Unfortunately we weren't paying attention and yesterday she discovered the fees that had been diminishing her balance, small though they were. She was quite unhappy to see this especially when she noticed that there was a passbook fee additionally being subtracted from her account on a monthly basis. Our daughter has been working for almost three months now and understands what her time is worth on an hourly basis. Needless to say, a plan to revisit the bank was in order.
     I did some research on-line, looking for accounts that benefited people with disabilities and discovered that our bank, TD Canada Trust, waives the monthly fee on a minimum chequing account if the account holder is an RDSP beneficiary. We have been saving money for our daughter in a registered disability savings plan for some time now so I was pleased to see this option available. In my opinion every bank should make this available and even offer this opportunity to other disabled folks, even those without RDSPs.  It is hard enough to live with physical or mental challenges without having your hard earned money clawed back by a financial institution. We did revisit the bank and met with our rep. The account was set up and order was restored once again.
     While at the bank we did mention our views on free chequing for folks with the PWD designation. We have learnt a lesson and though it was not a terribly expensive one, it was a hard one. When you have special needs, every nickel counts, especially when pennies no longer exist. Our daughter and I would suggest that you check your bank accounts and make sure that you are not paying unnecessary bank fees. After all, should your money be in your pocket or the bank's?