Low

   

     A tiny seizure, this one at home, safe on the couch, surrounded by family, over and done as quickly as can be....It's just another seizure. I guess though our daughter and I had high hopes for the latest anti-epileptic medication. So it was the first seizure in 24 days but it was also the first seizure of the new year, the first seizure on the full dose of the new medication and so we are disappointed--- so disappointed. Add to that the death of Grandma, the hospitalization of Nanny, the cold, the gray and illness and I felt brought as low as low could go....black and with no place to take it. God and I weren't talking.  I know, I know! Count my fingers and toes, my blessings--- I have a roof, I have food, what can I possibly complain about? Nothing, except some days contentment does not come easily. Intellectually I know that I should want what I have instead of having what I want but I don't want money or fame or even a new car. I want our daughter to be seizure free. I want her to be safe. I don't want her unconscious, even momentarily, anywhere but especially out there somewhere. I fear for her out there, vulnerable, unsafe, alone, unknown. I fear for her. And so it goes: we start over and count and pray and live our lives, day by day and so it goes.....

Purple

 

     Our eldest daughter has always loved the colour purple: purple clothes, purple stones (which are amethyst and not her birthstone), purple shoes (like Justin Bieber used to wear) even purple sheets. So it worked our perfectly when it turned out that the internationally recognized day for epilepsy awareness was Purple Day. Whenever our daughter has done her Purple Day talk at the local elementary schools talking about her life with epilepsy, she explains that " Purple Day is purple because the lavender flower is purple. Lavender is associated with feeling alone. Many people with epilepsy feel alone. It is hard when you feel like you are different from everybody else." Scrolling down any of the epilepsy Facebook pages you become aware of how true that is. Feeling different is a terrible burden, particularly when you are a young person. And epilepsy does not usually help you make friends, as our daughter can attest. Seizures are dangerous, scary, isolating and in many cases, uncontrollable. As our daughter continues with this new medication we say a silent prayer that this will be The One. This is no doubt a prayer that many parents utter. We were sad to note that Cassidy Megan, the seventeen year old girl who started Purple Day, had been struggling with seizures and had spent much of the holidays recovering. Recently our daughter had a seizure at a Vancouver Canuck's game which demonstrated to her that sometimes people can be very nice to someone with epilepsy however as we all know, that is not always the case. Anyway my "New Year, New You" resolution is to worry less and be more positive, something our wise, wonderful and eternally optimistic daughter does already every day.

Favourites

      In no particular order: my children, my husband, family, old friends, prayer, books, milk chocolate, rain on the roof, friendly dogs, old films, chickadees, live theatre, silence, orange roses, good jewelry, hummingbirds, worn denim, poetry,  unexpected gifts, pink wine, laughter, warm slippers, crawfish, painting, a sunny day, hearts of any kind, citrus, stone eggs, sunflowers, roosters, loud singing, a good mystery, turkey dinner, special days, anything blue....

Numbers

     Our daughter had a good run with her seizures for a while: seven months without a tonic clonic, seven weeks completely seizure free and then boom, two seizures, one of each in one day which then means a trip to the hospital in an ambulance and then some blood work and monitoring. We try to make sense of this major change in things but we can't; we can blame stress, fatigue, whatever we want but what does then make sense is a change in medications. Starting over is very hard for our daughter who is waiting to be seizure free: waiting to drive, waiting to be free of headaches, waiting to be more independent, waiting to be like other seventeen year olds, waiting, waiting, waiting.....
     Here are some of the numbers: eighty seizures in her lifetime, sixty-five of them since high school started, twenty of them complex partial, so sixty of them tonic clonic, a dozen trips to the hospital, dozens more tests of every description, fifteen pills a day and one in every hundred people in the world is dealing with a similar situation, maybe better, probably much worse.        
     Some days it feels huge for our daughter and overwhelming for us but most days is just is. We are blessed with terrific care from British Columbia Children's Hospital. We are living in a time when huge strides are being made in epilepsy research, awareness, and education. We live in a country which looks after our medical needs and therefore lessens the load substantially. And every day, there is one sweet girl living her life with epilepsy--- our girl.

Story

 

     Everyone has a story; some sad, tragic even, joyous or boring but we all have one. I have noticed some folks using a different approach these days in asking others about their stories.
     Yesterday was a two seizure day for our older daughter and after spending about four hours in the emergency ward, the attending physician said to our daughter, "Tell me about your seizures." What followed was probably more information than he wanted or even needed but it was more rather than less and so a successful question to ask. I also learnt a lot about her day by listening.
     On the other hand, when we came back from Las Vegas the Canadian border guard, after asking where we had been said, "Tell me about Las Vegas." I was feeling nauseated after a bumpy landing but glad to be home and proceeded to tell him what I thought about Las Vegas. It was probably not the information he was looking for.... but maybe he'll think twice about vacationing there!
     When I worked with hospice the client's story was the focus of our work with them. Whether they were working with hospice volunteers or as part of a loss support group, whether their story came out in one large piece or in tiny pieces over a long period of time, it was their story and our willingness to hear it that gave the client what they needed: a safe, caring place to share the story of their remembered one. The way that I got started writing again was by sharing the story of our pregnancy losses in the hospice newsletter. It was then that I learnt the powerful healing quality of personal story-telling whether spoken or written.
     What is your story? Who needs to hear it? How do you want to tell it? Maybe today is the day that you begin....

Nonverbal

     Nonverbal Learning Disorder has to be the most misunderstood, if not the least well named learning disability in the world. We can't even decide on a consistent abbreviation; is it NLD or NVLD? Very few people are aware of it. I have had folks in helping positions express sadness to hear that our daughter is nonverbal when that is exactly what she is not. Kids with this disorder are generally very verbal at an early age and our daughter was no exception.
     NLD is a neurologically based learning disorder which involves malfunctioning in the right hemisphere of the brain possibly due to white matter dysfunction. That means that all learning and understanding is affected. Causes can be head injury, radiation or removal of brain tissue from the right side of the brain among other things. It results in a number of issues academically, socially and spatially. It is named after the type of communication that is difficult for people with this disorder to comprehend but it encompasses so many other issues. The most significant for our daughter right now is a lack of social success. Our daughter is sweet and funny, kind and quirky, eager to please, happy to help, naive, trusting and usually alone, especially at lunch when over 1000 other students are milling about. You would think that there might be one other person there that she could connect with on a regular basis. Fortunately she has a few friends outside of school.
     NLD has become more well known as time passes. There were folks out there passionate that the world understand this syndrome. The late Sue Thompson wrote the go-to reference for NLD, The Source for Nonverbal Learning Disorders and the late Dr. B.P. Rourke had been doing research in this area for years. We are blessed that our daughter is alive in a time when the world is much kinder to differently-abled folks. It is not always so however as many kids having lonely lunches will tell you.

Pastor

     Our older daughter is a member of a great church youth group in our community; it is an oasis of safety and friendship in a world that often feels unkind and impatient. She came upon it by way of a classmate who was in the same school program. Our daughter has been part of this group for almost two years and the social highlights of her year are often associated with it. Part of the reason that it is so supportive is the dedication of the Youth Pastor who runs it. He is friendly, committed and cool; always approachable, he has time and attention for every individual there.
     It is not easy for a person who does not understand non-verbal communication and social cues to come upon a group that is welcoming. While most of us were awkward at some point in our youth, there is often not much compassion for someone who tends to interrupt, talks too much or doesn't always understand all that is going on around them. Our daughter feels like these young people are friends; in this group she find acceptance, appreciation and community. That is huge for her.
     We have attended many services at this church. It's accessible music, casual atmosphere and friendliness (not to mention the endless coffee) have made it easy for both our daughters to enjoy the services there. The Lead, Associate and Youth Pastors have made all of us feel welcome. The Associate Pastor reached out to us and  prayed for us when our daughter's seizures were particularly bad. He was the first person that I am aware of that our daughter ever volunteered information to about how long she had been seizure-free. I told him that that was a measure of how happy she was there and how much she appreciated him, his wife and their prayers. Today we learnt of his untimely death and so we are sad. We will never forget his kindness, wisdom and humility. We'll miss you Pastor Ken!