Appreciation

 Dear Surrey Memorial ICU, Medical and Emergency Staff,

When we pulled up to the doors of your Emergency Department just over two weeks ago we had no idea what my husband faced. We knew that we all had tested positive for COVID but each one of us had experienced it so differently that we did not know what lay ahead for him.

Our eldest daughter had mild almost non-existent symptoms and as she has epilepsy, we were relieved that she made it through so well. Fortunately our younger daughter was away at university. I had the full range of symptoms but none so severe that I could not recover on my own at home.

     My husband was not vaccinated however and his experience of COVID pneumonia was very severe. By the time he got to you he needed 100% oxygen and other medications. The scarring on his lungs, his blood clots and his irregular heartbeat were all life threatening. His prognosis was frightening to say the least.

     Fortunately we made it to you in time and after a week in ICU and another week on the 7th Floor, he was cleared to come home. We feel as though our prayers (and those of extensive family and friends) were answered but we definitely do not discount the excellent and experienced care he received at SMH. Everyone on staff treated us with the utmost respect and care. We believe that all our lives would be very different if our paths had not crossed. We are so grateful that they did. Thank you to everyone involved!

Sincerely,

Our Family

Virus 4

     First the basics: cough, sore throat, runny nose and fatigue. Then the next few: fever, chills, body aches and headache. Add the odd: tinnitus, nausea and pink eye. Then the losses: loss of appetite, loss of energy, loss of sense of taste and of smell, and in my case, loss of hearing in one ear. Combine for ten to fourteen days with two vaccinations, extensive time at home in bed and you have it: a breakthrough case of COVD-19. Unremarkable, unavoidable and completely survivable but something that I would not wish upon anyone.

Playing

      After months and months our daughter is back to the courts, basketball courts that is. Special Olympics BC basketball is back on and our daughter is glad. She is glad to see her teammates and friends, glad to see the coaches and their helpers, glad to be back playing again. Of course things look a little different: there are masks to wear, hand sanitizer to distribute, basketballs to clean and distance to keep apart. But it is all good. Everyone seems happy to be back and part of this valuable and fun program. And I myself have a new volunteer role, keeping track of everyone and making sure that folks are vaccinated, masks are worn and hands are sanitized by everyone going in and out of the gym. It sounds time-consuming and it is. Not only do coaches have to remind everyone about respecting each other but now there is an added layer of health concerns which is vital considering that many folks with disabilities have comorbidities or additional conditions that make their health fragile. Whether they have autism or epilepsy, Down syndrome or cerebral palsy, fetal alcohol syndrome or nonverbal learning disorder everyone there was happy to be back and happy to do whatever had to be done to get there. And really isn't this what Special Olympics is all about; their mission is "dedicated to enriching the lives of individuals with intellectual disabilities through sport." And you can't do that with the gyms locked, the courts empty, the pools unused and the lanes quiet. So yes, the game is on and we are excited. It was definitely worth the wait to see all those happy familiar faces. Thank you again SOBC basketball coaches! Your dedication to all of us is appreciated....

Home

     We are bitterly disappointed by the results of the Surrey City Council meeting that saw Harmony rejected by the councilors by a vote of 5-4 with the mayor again refusing to support this worthwhile and much needed project. And again there was no explanation as to why this occurred. Most of us take having a home for granted. Most of us lived with our parents as children and then moved into various rental accommodations as young adults. Then if we had the money we found a way to get a mortgage and spend the rest of our lives paying it down. That is my experience anyway. And having lived in B.C. for over forty years I know how expensive and elusive housing here can be. But I have always had a place to live. How about you? 

     Most of us assume that our children will follow in our housing footsteps, more or less. We assume that they will have a place to live. But what about if they were intellectually disabled? What about if they were underemployed and could not afford the expensive rents currently demanded in most parts of the Lower Mainland? What if they were new to this country and needed community support to get started here in Canada? What if they were a single parent? A retiree? Someone new to the job market without a great deal of savings? A student with loans to pay who needed a break to get established in the community? 

     Fortunately for us our daughter comes from a very large family of caring folks who would probably help her. But this is not true for everyone. In this community however we have this amazing opportunity to provide a place to live for everyone; a spot where disabled people, retirees, students, immigrants and single parent families could afford to call home. This place is called Harmony. Tomorrow the people who want to live there are going to come together on site for a photo opportunity and a reporter from the local paper will be there as well. Our daughter and many of her friends and acquaintances will be there. These are people that want to live somewhere special. They want to live in Harmony! Please check out @uniti4all.com for more information. #WeNeedHarmony.

Lawrence

      Dear Dad,

     You're getting on...I know this because you gave me your D. H. Lawrence collection. Thirty-nine books, most of them by him, some just about him, are mine now. You did it casually, just asking in the middle of another conversation if I would like them. I said yes of course. I might be worried except you have been getting rid of a lot of possessions lately. I think that if Mum weren't still alive you might be living in an almost empty house. She likes to keep things and you like to give them away....
     Your admiration for D. H. Lawrence started just after I left home. I was about seventeen years old. I seem to remember that you took a continuing education course in English Literature and fell in love with his ideas about love. You had grown up in England at a time when he was considered a very controversial writer. One or two of his books may of even been banned. I remember a difficult conversation about that one night after I brought my college English professor home for dinner. Suffice it to say that my teacher's opinion of Lawrence did not endear him to either one of you at the time.

     I also hold Lawrence in high regard. His writing is forthright, beautiful and honest. It was the first writing about love, sex and class that I remember reading. The glimpses he gives into other's lives at other times and in other worlds are exceptionally clear and unapologetic. 

      Anyway I left home and ended up in Louisiana married and apparently allergic to fire ant stings. An anaphylactic experience sealed the deal when I almost died. And so my husband and I came back to Canada. I clearly remember you and I going to see the film "Lady Chatterley's Lover" in Calgary. It was the first 18+ movie I had ever seen. I remember wondering aloud if they would check my identification. You laughed at the idea because I was so obviously attending the film with my father, according to you. The film was beautiful, real and vivid and honest; I loved it. I bought a copy of it on VHS as soon as I could and watched it many times.

     The fact that you are giving away your most long-kept and precious books and the apparent relief it gives you that they were wanted by a family member tells me that you are looking at the end. We all look at the end from time to time but I would imagine that being in your late eighties gives you a particularly close vantage point. I know that you aren't afraid to die. Your faith gives you answers to any questions about what comes next. I know your own parents turned to God when your eighteen year old younger brother Michael committed suicide. Your life was not always easy especially at the beginning but according to you, you have been blessed: a strong marriage, five children, many grandchildren and great grandchildren, an interesting engineering career and good health. 

     I just wanted to tell you that you have been a wonderful father--- a great dad and a good friend. Even when we didn't agree on things (many things as I recall in my teenage years) you have always been there for me and for that I am forever grateful. And every book that I pick up for the rest of my life will remind me of you, no matter the author and that is a gift for which I could never thank you enough.

I love you Dad! 

     

     

Memories

    

     My aging brain plays the usual tricks on me...."What is that actor's name?"... "When is that appointment again?"... "Who did we see at the Orpheum, the last time we went?" You know, when a word won't come to you right when you want it and it shows up later?  Maybe you don't know but I do. And of course I worry about that, like any other soon-to-be sixty-four year old. But that's another story. 

      Lately I have been seeing more and more posts on Facebook from my high school peers and friends. The familiarity and the nice feeling I get from seeing their faces, whether old, like mine is now or young, when I knew them and saw them pretty much everyday is surprising to me. These are folks that I have not seen almost without exception for almost fifty years! Fifty! Well actually forty-seven but who's counting? I guess I am....

     Perusing my long lost recently found 1974 grad year book again was like greeting an old friend, albeit one that I have not seen in a very long time. So many familiar faces, vague memories, old remembrances and the photos! People I knew looking exactly like people I now know on social media just younger. Maybe everyone else is sick of us Baby Boomers reminiscing but I'm not. I guess I love how people look like themselves even when a lot of time has passed. I am happy that our younger daughter wears a ring I wore when I was her age. It's cool to share a Jackson Five video from 1974 with our older daughter, back when Michael was sixteen and looked it. I don't mind that tie dye and flared jeans are back. I have never been able to find a different way to wear my hair other than the way I wore it back then... and I guess that finally, I am okay with that.

Harmony

      Ever since our daughter was old enough to put it into words and action she has been doing one thing: saving her money. First she was saving for a purple Mini Cooper and then when epilepsy made driving impossible, she kept working hard and is now saving for a home, saving for her future. Our daughter has an intellectual disability which means that she would need to live in a very special place; a place that was affordable, accessible and supportive. A place like Harmony.

     Unless you have a relative with a disability you probably do not realize how lucky we are to live in Surrey. Here we are fortunate enough to have UNITI. According to the website:

 "UNITI is the partnership of the three affiliated societies that have provided important community services for decades. Semiahmoo House Society provides quality services and supports to people with disabilities and their families in Surrey and White Rock. Peninsula Estates Housing Society provides affordable and inclusive housing that reflects the diversity of our community. The Semiahmoo Foundation ensures that UNITI has the recognition, relationships and resources to support an inclusive community." This combination of these three vital organizations in our community makes us unique. 

     Since she is now an adult, our daughter realizes that she will not always live with us, her parents. We are already older than most of her peers' parents so time is important. Every day is an opportunity for our daughter to add to her skill set and knowledge base in order to become more independent. Disabled folks like her have the right to live independently in a community that lifts them up and supports them. And as their literature explains, Harmony is a 91 rental home, 6-storey inclusive building which will be affordable and inclusive housing for the life of the building. It will house families, seniors, people with disabilities and others. 

     If you want to help, this is what you can do:

1. Please email Surrey City Planner Christa Brown at Christa.Brown@surrey.ca  2. Follow us on @uniti4all on social media for updates. #3. Sign the petition. #WeNeedHarmony. Our daughter is counting on you!

Life 2

     It feels trite and silly to be posting photographs of cabbage recipes and bearded irises when three thousand miles away family members are mourning the loss of their daughter, granddaughter, cousin and niece. But that's what I am doing. It feels pointless and even reckless to be shopping for groceries when even little ones are now losing their life to COVID. But that's what I am doing. It feels sad and selfish to attend video taped church services when so many feel hopeless. But that's what I am doing. It feels like a waste of time to have a zoom meeting about our RESP when our younger daughter is so full of anxiety and dread. But that's what I am doing. It feels ridiculous to write about resilience and strength when our daughters are worried and scared. But that's what I am doing. I am working and sleeping and cooking and cleaning and driving and walking and sitting and watching and singing and praying and sewing and weeding and raking and talking and listening and fetching and thinking and feeling and living every day. Because that's what you do.

Resilience

re·sil·ience 

/rəˈzilyəns/

Learn to pronounce

noun

1. 1.

   the capacity to recover quickly from difficulties; toughness.

   "the often remarkable resilience of so many British institutions"
2. 2.

   the ability of a substance or object to spring back into shape; elasticity.

   "nylon is excellent in wearability and resilience

     I recently re-read a post from Mindshift entitled "How to Help Teenage Girls Reframe Anxiety and Strengthen Resilience". It is a very valuable read which was passed on to me by another mother. With anxiety and depression being diagnosed in so much of our population, is it any wonder that our sons and daughters are suffering with these spirit crushing disorders. As I have noted in the past, I too have experienced dysthymia or chronic low-grade depression since my teenage years with depression hitting me in my late thirties. This occurred after a keenly felt pregnancy loss. And although we talk about these things more than we used to, the stigma of mental health issues remains. I hesitate to write these words even though I must.

     We humans do not deal well with loss and change yet they are a crucial part of the necessary and unrelenting rhythm of daily life. Teenagers' brains are not yet fully developed and therefore are extremely vulnerable to emotional extremes. Add to that the full on, unending assault of social media into every crack and crevice of our already stressed out lives and you have a recipe for disaster. Of course some losses are comparatively small; a failed exam, a friendship gone wrong, an unexpected lay off make life hard. Still more difficult losses like the divorce of parents, a pet death or moving out of town are not given sufficient time to be processed. We rush through grief like we rush through life. Healing is ignored and significant losses are then overwhelming and complicated.

     The recent suicide attempt of a young friend makes me weep with remorse. Is there something I could have done to offer support? How do we connect with others when we are pushed to isolation by pandemic guidelines? How do we help each other right now? These questions will haunt me as the answers are largely unknown. All we can do, when we get the chance, is to be present and to listen. And then listen some more. I hope that we can all find ourselves to be resilient. I pray that we can help each other find hope.

Sleep

      Aaahhh sleep...sometimes there are no words. As a senior, I value sleep in a way that I have not since the birth of our daughters approximately twenty years ago. Sometimes it comes, sometimes not, but I always appreciate sleep when it finds me. Sleep is seriously underrated and the lack of it is a real problem for many folks. My aging father has an awful issue getting enough sleep and though certain pills make it possible, his doctor is hesitant to re-prescribe. Our younger daughter also has a terrible time achieving a full night of restful, uninterrupted sleep much to the detriment of her mood and energy level. 

    Apparently about ten percent of the Canadian population suffer from chronic insomnia while over twenty percent experience occasional bouts of sleeplessness. It's true that a lack of sleep can shorten your life span due to the significant health issues poor sleep exacerbates. Eight hours of sleep a night is recommended; many of us try to survive on five.

     Having a warm, clean and comfortable bed is something that most of us take for granted. It is a necessary element to healthy rest. It isn't everything though. Separating ourselves from our electronic devices is crucial to the onset and maintenance of a good night. A darkened room, warm milk, a hot bath --- all of these can help with a restful night. I know that I need to read before I can sleep; reading clears my mind and makes sleep possible. 

     Once again our sleep will be negatively affected by Daylight Saving Time this weekend and I am ready to stop remembering whether I need to "spring forward" or "fall back". As the clock changer in my house I would be happy to let that chore go! What do you think? In the meantime, if you can, sleep well!

Hospital 2

      An abscessed tooth sent me to the emergency department of our local hospital at four o'clock yesterday morning. Other than for a COVID test, I had not been to the hospital in a while and I was amazed at how quiet it was there. After a brief COVID screening, registration and triage intake I was sent to a long narrow hallway with about two dozen chairs in it. Every other chair was tagged as being unavailable due to social distancing and so I sat down and waited all alone for a couple of hours. No one joined me and the silence was broken only by the squishy sound of a nurse's rubber sole shoes in another room and the solo wanderings of the hospital security guard. It was lonely.

     The staff at the hospital were wonderful though and I appreciated the care and concern of all of them from triage to registration to emergency; they were unfailingly courteous, gentle and professional. When I was called from the waiting room, there were many other folks already in there as it turned out: an elderly lady who had fallen brought in by ambulance, a loud man who kept asking to go to the bathroom every few minutes, an older man in a wheelchair with swollen plastic wrapped feet who seemed to be a regular and others. All were seen to as kindly and considerately as I was.

     But I did have to wait and so I had time to inspect the photos of the hospital's beginnings. We were both born in the fifties, this hospital and I. I enjoyed the photos of the auxiliary ladies and their stylish hats, shovels in hand breaking ground for the predecessor of this building that I was now in, receiving care. And as I caught a glimpse of my tired swollen face and graying hair in the glass of the photos, I reflected on all that had passed in those sixty odd years. What of all the folks that had come and sat in these chairs as my family and I had after bone breaks, seizures or accidents over the years? My husband and I had brought home two babies from this very hospital and lost one more here too. My husband's beloved mother died here not so very long ago. Our family is not the only one to have experienced so much here: joy, grief, pain, relief--- all of it. 

     A hospital may seem like a giant machine sometimes, cold, brittle and inhuman. But like other large buildings, schools, churches, libraries and offices, it is the people inside a building who give it its essence. The humans in my hospital were gentle and caring, funny and warm. And so I say thank you!

Recycle

     We have all gotten used to recycling at this point. Some dinosaurs like my husband still put stuff in the wrong bin but we always seem to catch it and make it right. Our older daughter deals with the garbage and recycling as part of her chores at home and she does a great job. In the past she's accumulated bottles and cans through friends and family and she and I have sorted them, brought them in and she has received the cash.             

     Since we moved we connected with some of our neighbours through the neighbourhood's Facebook page and discovered that there were folks who were happy to let our daughter bring their bottles and cans to the recycling depot. They understand how hard it is for a disabled person to make money and though our daughter is usually employed she will never make the amount of money that most of us take for granted. Typically disabled people make minimum wage and if they are fortunate enough to have a job, they often work only part-time. During a COVID layoff this little job has been a life-saver, not only for the cash that it brought in but more importantly for the connections our elder daughter made in the neighbourhood and the sense of purpose it gave her. 

     The recycling depot now offers a service whereby they sort and count the bottles and cans and credit the individual with the appropriate amount. I for one, really appreciate this as I am allergic to stinging insects and the wasps that used to hang around us at the depot as we sorted made it a very stressful activity. Anyway, suffice it to say that we are big fans of the Return-it Express program and would recommend it to anyone. Our daughter has made a few more friends in the neighbourhood, a little pocket money and the feeling that she is doing a good thing. You can't put a price on that! 

Breakthrough

    

     For three and a half years our older daughter was seizure free. During that time she got used to a certain level of independence that seems usual for most young adults. She got to go places with friends, went on dates and was even able to be home on her own. Since the breakthrough seizures that occurred in July and again in December we are back to our old ways: hypervigilance, unlocked doors and so many other precautions.           

     Breakthrough seizures are those that break through the anti-epileptic medications. Sometimes they occur because meds are skipped or because of provoking factors such as emotional stress, sleep deprivation, alcohol or other recreational drugs and TV or video games according to the NCBI.  In our case, last year's seizures happened on the eve of our daughter's twenty-first birthday and on Boxing Day morning. Over the years our daughter's seizures have often occurred at times of excitement or when daily routines are changed, for example at times of celebration or when travelling. 

     There are different schools of thought on whether medications should be adjusted after a breakthrough seizure but of course as parents, we look to the medical expertise of others to know what to do. We dislike the fact of pharmaceuticals being a daily part of our daughter's life but in the case of epilepsy, they are a life saver. Our daughter spent most of her high school years trying different medications at different doses to find that level where both types of her seizures would be controlled and the side effects were bearable. One medication that she took for a while made her terribly depressed. And while depression is common in teens with Nonverbal Learning Disorder and epilepsy, this medication was a mistake for our daughter. Fortunately her pediatric neurologist was responsive to emails and we quickly got her off that one and on to something else.

     We had hoped that anti-epileptic drugs or AEDs might be a temporary measure for our daughter. More and more they are looking like a permanent aspect of her life. They keep her mostly seizure free and mostly herself. We all can live with that!