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.

Cruise

     My sixteen year old daughter and my husband were just removed from a Royal Caribbean cruise " Adventure of the Seas" before it ever left port in San Juan, Puerto Rico earlier this month. The reason--- because my daughter has epilepsy and had two small seizures before the ship departed. Plane travel is tiring, changes in sleep and eating schedules often occur and our daughter has had seizures before while on vacation. She has had almost seventy seizures in her short life and we have learnt to cope with them: at school, in the car, in airports, in restaurants, at church, at Special Olympics, at Club Med even while shopping at Ikea. In every instance people have gone out of their way to assist us. Until now. In this instance the doctor on board treated my daughter coldly and uncaringly. She demanded that my husband pay $200.00 so that she could examine our daughter. When my husband declined, she retreated to her office. She did not even inquire about the anti-epileptic medications my daughter was taking or look at her medic-alert bracelet so as to determine her health history. The doctor then told them they had a half an hour to pack and get off the boat making it impossible for our family members to consult one another. The purser backed her up.
     Even the five year olds at the elementary school where our daughter does her epilepsy awareness talk every year will tell you: epilepsy is not a disease; it is a neurological disorder that affects almost one in every hundred people. People with epilepsy should be given the same treatment as anyone else. For the doctor, the staff and this cruise line to treat my family like this is unconscionable. Their family reunion turned into a week of hanging around in San Juan until everyone else returned so that they could at least have one full day together. This was a rare opportunity for my husband who lives in B.C. to see his son and grandchildren who live in Ontario. And this is a son who brings himself and at least thirty other friends and family members on this cruise every year and has done so for the last four years. All I can say is that the Royal Caribbean Cruise Lines has set the epilepsy awareness cause back one hundred years. If you have epilepsy don't cruise with this company. You never know when they may leave you stranded.

Bully 2

 

     When I was a young girl and someone did and/or said something unpleasant to me, I was instructed by my parents to ignore the someone; my folks said that they would eventually tire of the lack of reaction from me and move on. It is the very same advice that I gave to my girls when they encountered unpleasant someones of their own. Subsequently it seemed that they were accused of leaving the bully out, of making them feel unwelcome. Wasn't that the point?  And let me be clear: I did not ask them to retaliate, or to be rude in any way. My husband and I gave the same advice: Smile, say hello and keep walking. Do we now reward bad behaviour by continuing to include the bully in our relationships regardless of the fact that this person is foul-mouthed, rude and lacking in even the most basic of social graces? Are the rights of the one now more important than the rights of the many?
     We are familiar with bullying. Our extraordinary-needs daughter encountered it in elementary school; my husband and I have had our own experiences both as children and adults. We have all been told that one of the reason bullies are bullies is that they have been bullied themselves. This may well be true but it does not let bullies off of the hook. They are responsible for their own behaviour and should therefore understand that other people may not want to spend time with them. And this is not just a school yard phenomenon; this happens with adults in the workplace as well,  There are bullies everywhere, in every walk of life, old and young. It is up to us as parents to model the behaviour we wish to see from our children and when we don't see it, to offer correction and guidance. There is help out there for people who need more than that.

#153

     I have enjoyed blogging much more than I thought I would. I can write and post a blog whenever I want, where ever I want, day or night, summer or winter, right or wrong. The cathartic effect of blogging is similar to that of journalling and therefore very good for my mental health. Before I met my husband I had journalled (which is not a word according to Blogger, but then neither is blog according to Blogger) for over twenty years. These books I keep in a very special Korean chest and this box is possibly the third most important thing that I would drag from our house if it were on fire, (My daughters being the first two of course.) Memories like the ones contained in those journals can never be replaced or even recalled at times by my almost fifty-nine year old brain.
     Paper, pens, photos, books, cheques even concert tickets and boarding passes are being replaced by temporary screen views saved to clouds and other forms of data storage. Children are being asked not to learn hand-writing while almost everyone has found ways to avoid buying postage stamps. The hand written journal is now almost certainly a rarity. And here am I writing this on a gray, rainy Saturday afternoon as a way to avoid vacuuming.
     The camaraderie and sense of community that I have derived from publishing these posts, meeting other parents who have kids with epilepsy or an intellectual disability on Facebook, emails or texts exchanged in advocating for our special-needs daughter have all been so beneficial to me and therefore to my family. I have learned so much about learning disorders and epilepsy from very many people; parents, kids, teachers, aides, advocates and doctors have all been so generous with their own knowledge, experiences, struggles and achievements. Not to mention that we have probably saved thousands on therapy thanks to this very blog, if not this post, post number one hundred and fifty-three.

     

Pipsiedoodle

   

     As some of you know, our precious Piper died this month. She was a bright, beautiful dog, eighteen months old; smart and silly with a remarkable ability to make us smile, laugh even. I cannot fathom how much I miss her; she was after all, a dog.
     Funny though how an animal, a pet can become a member of the family. I don't mind telling you that I miss her unique ways: the way she talked to us with a bone in her mouth, the way she helped round up our wayward chickens so well, yet so gently, the way she snuggled into her mistress, our daughter as if the bed was all hers and she was allowing her a tiny portion of it.
     I am very familiar with the path of grief. Personally I have been relatively fortunate in that regard but the experience of my previous work with hospice is never very far away. Life is change and change is loss after all. I have never been more aware of this than as a parent. As our children move through their teen years the calendar ricochets ever more quickly through the days, weeks, months and years. Time passes too fast.
     Today however I would like to sit still for a minute and fondly remember our Piper. She was a bright spark, too soon gone and yet still just a dog: a fun-loving friend, a cheerful companion, a relentless retriever of Frisbees all wrapped up in unconditional love--- the very definition of a dog.