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!