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!

Twelve Things I Know About Aging That I Wish I Didn't

1. Back pain: Who knew? The simplest chore can now render you useless for the rest of the week!
2. Insomnia: Some nights you sleep, some nights you don't. You're always kept guessing. Who said life would be dull?
3. Whiskers: This is something that I heard about. Hair grows out of places that it shouldn't. As if getting old isn't bad enough!
4. Skin: Spots that are not acne appear on your skin for no reason. I have no idea why.
5. Gravity: I am not kidding. Everything but I mean everything falls or falls off. Don't ask.
6. Appetite: Old people don't need to eat much because they don't do much. And if you do eat a lot, get ready for #2. On this list I mean.
7. Gas: Another one of those things that I heard about. Really!
8. Hearing: I will never experience silence again. There is a sound in my head that no one can do anything about---tinnitus. Look it up.
9. Teeth: They get long, they break off, they let you down. I mean it.
10. Vision: The top of your glasses and the bottom of your glasses do different things.That's all there is to it.
11. Energy: It is so much easier not to do things than to do them and even if you wanted to, you don't have it in you...enough said.
12. Lists: You can no longer remember anything much less the name of the director of "Stand By Me". (I know it's Rob Reiner. I googled it.) You must make lists for everything. Everything!

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.

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.

Lean In

     I am always blown away by our children. They are wise beyond their years and have taught me an immeasurable amount about so many things. Our youngest just wrote a very impressive list of "New Years Goals/Changes" which inspired me to consider my own. The most awe-inspiring entry on our daughter's list, which included improved dental hygiene, dog training and self-knowledge was the last one: "Give gifts of kindness." Three of the four words in that sentence would be in and of themselves enough of a list to be considered weighty and important. And when put together as a sentence, as the twelfth entry in a twelve year old's New Year's Resolutions, it is hefty, impressive and without match.
     I need to connect with others. I should be talking to my husband more. I could be making an appointment with my designated health care professional and/or my spiritual advisor. Or I can just read the twelfth entry on our daughter's New Years Resolution list: "Give gifts of kindness". And then do it.
     At a service in December, our pastor recommended that we lean in; connect with each other, with others, with God--- take someone for coffee, invite someone for lunch, listen. Whether delivered by a smart and funny adult man or a smart and funny twelve year old girl, the message is the same. My resolution is to follow their advice. And you?