Lost

 

     I am always losing things. Sometimes they are just misplaced; other times they are out and out gone. Sometimes they are just a favourite pen, a comfortable sweater, other times, the terrible times, they are important: a passport, or another government document or worse, your grandmother's pearl ring. Like any repetitive behaviour there is a definite pattern associated with these crazy-making times: noticing the loss, thinking about it, looking, brooding, looking some more, deciding you are a moron, focused looking, retracing your steps mentally and physically, giving up, more looking. If ever I wonder about my mental health, these are the times: the waste of time, my apparent inability to learn anything from the last time this happened, did I mention the waste of time....
     This past one was a doozy! I "misplaced" my lottery ticket to the sixty million dollar draw this weekend. It didn't matter that I would have an easier time winning the Nobel Prize for Literature while simultaneously winning a gold medal for Canada in the Artistic Gymnastics category than actually winning the grand prize; lost it was and look I must. Unfortunately this incident fell squarely on a week when sleep eluded me as well. There are some things more humiliating than wandering around your house in the dead of night casting the beam of a rechargeable flashlight everywhere you can think of, but I am not sure what they are right now. Let's just say that I am too tired to think about it because of the aforementioned moonlight rendezvous with stupidity. The only satisfaction I got was hearing that no one actually won this week's first prize which means that I still have a week to lose this week's ticket too! 

Many

     When you first have children your life opens up to a world of possibilities: new people, new activities, new places, new friends; so much is new and a family first. And when you have children with extraordinary needs, your world becomes even bigger and also much smaller. Dreams are rearranged, goals are altered sometimes hopes are dashed but still as parents, we wish and pray and even hope for simpler futures, for baby steps with big outcomes. At our house we count up days that are seizure-free, nights of good sleep, outings that are special because of the presence of friends or family. For some families these things are not yet theirs: seizures are ongoing, sleep is hard won and outings are few because of a lack of understanding and acceptance in the world outside. And some families are dealing with much bigger daily issues: heart surgeries, feeding tubes, wheelchairs and endless hospital stays. The list of trials many families face goes on and on....
     But there is help in many cases: respite for parents, educational assistants at school, programs and facilities, teachers, doctors, helpers, coaches and volunteers. We have come across some very special people as a result of our daughter's different abilities, more than we could possibly mention or even count. And this is how our world is made big, by the people who help. As our daughter takes steps toward adulthood and independence, she takes those steps with the support of so many helping hands. Many helping hands do not mean that she won't fall--- she almost certainly will. Many helping hands mean that she will have a great deal of help to get back up and keep moving forward.

Friend

     Want to know something? Things are going well for our older daughter.... She is almost four months past her last major seizure, a real bad one which landed us in emergency and it is over two months since her last seizure--- period. This is huge for us and means that despite my carpenter husband`s recent shop accident, we are all breathing a little easier. Our daughter is volunteering at two different thrift stores and at her church`s Sunday school this summer. She is going to her second camp of the summer: a sleep-over camp for kids with epilepsy and she is really looking forward to it. But finally the most important and life-changing aspect of her life is the presence of friendship. Since joining Special Olympics and Challenger Baseball our daughter has made a few friends and this has made all the difference in the world. There is a spring in her step and a sparkle in her eyes that was absent for some time. Having a guy friend and a girl pal to go to the movies with, to swim with, or to just hang out with has made an incredible difference in the way that our daughter moves through life. A mother I know whose daughter struggles with depression said to me ``A mother is only as happy as her saddest child.`` I know this to be true. I also know that our children`s happiness is the most important aspect of life barring their health. When these two factors walk hand in hand in a positive direction then the world can be a beautiful place to be.

Teacher

Dear Teacher,
     As our youngest leaves elementary school it is hard to put into words how much we have appreciated you and your teaching over the years. You have taught but you have also challenged, enriched, laughed with and listened to our kids. And you stretched the boundaries of the classroom with a school garden and various field trips. Whether they were learning to plant, weed and harvest vegetables at God's Little Acre, seeing our garbage languish at the landfill, being taught to slack-line on a rope, knowing where every country in the world was by being given map colouring as homework, or having their good old-fashioned punctuation corrected, they took it all in.
     And so both of our daughters have had the good fortune to have you as a teacher. It was probably one of the few years that our older daughter could remember liking elementary school. Our younger daughter has grow into a curious, independent and knowledgeable person in part because of her time in your classroom. Every day they could count on being heard and being treated with respect by a man who never yelled and often played his guitar. Our girls are better people for having known you and so are we. You have our thanks....

Cruise Part 3

     My blog post "Cruise", detailing my husband and daughter's removal from a cruise ship due to her two seizures was forwarded on to the Royal Caribbean Cruise Lines Guest Relations manager. The response we received from him was delayed, but lengthy and very polite. I had asked for an apology to our daughter, $2,000.00 to cover my family's unexpected hotel bills, a matching donation to The Center for Epilepsy and Seizure Education in B.C., and an examination of their ship's doctor's approach to guests, particularly guests with epilepsy. What we received was a request to pass along their sincerest apology to our daughter, no compensation, no donation and an indication that perhaps their ship's doctor could have been more sensitive. They also included a Letter of Credit so that my husband and our daughter may take another cruise with them. Pardon me?
     The gist of the letter was that her safety was their main concern. As parents we might be insulted that they believe that our daughter's safety is not our main concern. The safety, health and well-being of both of our daughters is our first and most important priority. Of course it is!
     Anyway, I sent a letter back expressing my disappointment at their lack of understanding and the pointlessness of their "gift". Being a Purple Day ambassador, our daughter sent them some purple pencils that say "Stand Up for Epilepsy" on them. She wanted them to have these as a reminder that the treatment she received should never happen to anyone else. Somehow I don't think that they will get the point.

     

Purple Day Once Again

 
     This year is probably our eldest's last year as a Purple Day ambassador at the local elementary school; her sister is moving on (to high school) and so apparently is she, as far as Purple Day is concerned. This year's epilepsy awareness was wonderful--- the kids were mostly dressed in purple, with lots of great questions and good attention to all we did and said. What floors me every time is the children's concern for our eldest daughter and the memories it stirs up for them of other situations: a parent's illness, losing their parent in a store, a cousin's seizure. They are quick to share and asked a lot of very valuable questions: "How many seizures has she had? What triggers a seizure? Why does she have seizures? What was her first seizure like? When was her worst seizure?" Unfortunately I had to say that her worst seizure was probably this week with a long seizure at school with no apparent triggers which resulted in her falling and hitting her head on a table. Fortunately, several hours in emergency, a neck x-ray and blood work revealed that she was fine; just bruised, in pain and sore for many days afterwards.
     Despite our best efforts to the contrary it seems as if epilepsy is not done with us. I don't know what the future holds for us all; our daughter has said that if she is still having seizures after her graduation from high school that she would like to have surgery. This is an option that fills me with trepidation but an option nonetheless. Perhaps research into CBD will speed up it's use as an antiepileptic. Or maybe we will find that elusive perfect dose of prescription drugs that will keep our daughter seizure-free. Or perhaps there will be something new. Any way you look at it, it is a tough go and one we would be happy to live without, except we can't, at least right now. Every day that she climbs out of the little yellow bus and and says "Hi Mama!" is a good day. And that's just the way it is....

Cruise Part 2

     Thanks to all of you my previous post about the callous way in which our daughter and her dad were forced off their cruise vacation on board the Royal Caribbean Cruise "Adventure of the Seas" was seen by over eight hundred and seventy folks! That's astonishing to me! The positive comments and votes of confidence have done much to bolster our daughter's feelings and sense of self. In my opinion it is bad enough to endure the indignity and chaos that a life with epilepsy provides without being forced to feel as though she had any choice in the matter: seizures happen. It's up to us to move on from there and live our best life.
     At this moment, we have had no response except an email sent on the seventeenth of March asking for our patience and understanding while they review our concerns which they estimated will take a few business days. Which means that it has been ten days with no response. Therefore the only thing I can gather is that folks with epilepsy are not welcome on their cruise ships. We of course will never be taking that type of vacation again. It is very disappointing because it seemed as though the world had taken great strides in it's empathy for and acceptance of people with extraordinary needs and specifically epilepsy.
     This week our daughter will do her sixth consecutive Purple Day talk at her sister's elementary school. She will tell the kids what to do if they see someone having a seizure. She will talk to them about Purple Day and why a Canadian girl thought that epilepsy awareness was a good idea. She will let them know that people with epilepsy sometimes feel alone in the world. She will teach younger children that kids with epilepsy are just like anyone else. They just need a little comfort for a few minutes from time to time. A little comfort and a little understanding.