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.