everythingIneedtoknowIlearnedina chickencoop;)

     I have learnt a few things from the chickens in our coop over the years; a chicken run and its citizens are a messy, muddy microcosm. Here is what I have discovered, in no particular order: Who's the boss? Well, size is not what counts, it's attitude. Our largest and oldest rooster is currently winding down his days in the chicken hospital/nursery/hospice. Always a gentle soul, he could quash any hen argument with a glance. That being said: Love your neighbour. Living close to anybody is hard. Regardless of whether they look like you or don't, your neighbours need to be tolerated, respected even appreciated. Our differences are what keep us interesting. Which leads us to: Stay busy. Whether you are pecking scratch, chopping firewood, laying eggs or writing your thesis, it's important to keep at it. Moving keeps you up; being idle makes you low. Get to it! Also though: Rest when you can. It's important to get down time, relaxation and sleep. Standing in the sunlight can be quite rejuvenating, sitting in a dusty hole is good for what ails you, especially between meal times. And so: There is enough for everyone. Sharing can be difficult, especially where food is concerned. Still it's better to take a little and go back for more than taking too much. There's always more feed/food, so chill. Which brings us to: Mama/Papa knows best. She has been where you are right now and even if she hasn't, she knows someone who has. If not, he'll tell you so listen, you might learn something. And lastly, do your best. Again, it's not the size of the egg that counts, it's the quality. As my husband would say, you only get out of something what you put into it....

Pastor 2

 

     Sometimes it is difficult to put into words the effect one person has on another's life. If their influence is positive yet subtle, the way a breeze can cool a stiflingly hot day or an unexpected compliment can save an otherwise awkward exchange, the effect is sometimes overlooked. If you are young and struggling socially, a great Youth Group at a warm and caring church can be an amazing blessing. Add an awesome Youth Pastor and you have a recipe for success.

     Our eldest has been blessed to have such a person in her life. Encouraged to be a regular member of the Youth Program and further encouraged to be a volunteer in the church's Sunday School helping with the younger kids, our daughter gained confidence, insight and valuable perspective. The boost to her self-esteem and sense of self cannot be overstated. The fact that he and his young family are moving and that he is returning to seminary is a great loss to her and all the youth and children of the church. Speaking personally, the adults will miss him too.

     Patience, positivity, honesty and a wonderful sense of humour are just part of the reason that he will be missed. It may be difficult for a while for our daughter to move forward without this caring and cool person at her church. But that is life; loss and change rule. All we can do is pray for him, his wife and young children and hope their path leads them our way again. Thank you Pastor Orin!

Satisfaction

     A famous guy even older than me is still singing the old rock' n 'roll song of the same name and there is something to be said for it....satisfaction, I mean. For me it happens in the late afternoon when the sun is shining but thinking about setting, my girls are home and safe, dinner is figured out because it's a huge pot of soup that I made yesterday, the eggs are gathered, the house is warm and soon it will be time to sit together and relax. I am sure those old guys were writing about something else but there you go.
     There is a lot to be said for wanting what you have rather than having what you want, a sentiment that our society does not give a great deal of airtime to; shopping makes the world go 'round apparently, especially at this time of year. The traffic is beyond frustrating, there are line-ups everywhere for everything and a sense of panic that seems to dominate the world out there. There is therefore a lot to be said for staying home, staying close and spending time instead of money. I don't mind how many times I lose when I play "Sorry" with my daughters, I am just happy to play. (Actually I have never won--- how does that make sense!?)
     Our eldest is enjoying her life skills program and is now over ten months seizure free and we are still not able to explain this change. Explanation is impossible however and so unnecessary; life is good. Our youngest dislikes high school but works hard to get straight A's. Life is good. I am aware of how quickly this all could change. I am also satisfied that we are doing all we can to keep them both healthy: good food, regular exercise, lots of sleep, prayer and fun and of course for the oldest, her anti-epileptic meds. If we make it to February, there will be a party. In the meantime it's all good.

Blessed

     Thanksgiving has come and gone but I am finding that the list of things that I am thankful for keeps going. Maybe that is why I am more cheerful at a time of year that usually has me feeling a little blue. As our older daughter continues to be seizure free, nine months now and counting, perhaps those are the silver threads that weave through our days: the hope that health and safety for our girls continues and our ongoing desire for that to be true for all.
     We are lucky enough to live in an exceptional community. We have the beauty of the ocean ten minutes away while being fortunate enough to live in a rural setting with an old growth forest in our own backyard. Our weather is the best Canadian weather possible: not too hot, not too cold and all four seasons. Our city has it all: culture, like the incredible theatre produced by Peninsula Productions, business, services, infrastructure. Our daughter with special needs has the amazing Semiahmoo House Society nearby which provides a wide range of recreation, leisure and community living and work programs for anyone with extraordinary needs. We have everything we need in local churches like White Rock Community Church which warmly welcomes folks every week plus schools, shops, libraries, parks, pools and entertainment. We have it all! We are blessed, lucky, fortunate--- pick one.
     Life can change in the blink of an eye, the flash of a camera, the change of a traffic light; I know this all too well. Today we are blessed.

Judy

     Our daughter lost a Special Olympics teammate to cardiac arrest on Thanksgiving weekend. She was a lovely young woman with caring family, 35 years old, non-verbal and an athlete who worked hard in many disciplines of Special Olympics: basketball, swimming and bowling to name a few. Our daughter had only known her for a short time but was impressed with her teammate's cheerfulness, hard work and respect for others. That she died in circumstances that could have been prevented makes her story that much sadder.
     Tonight the Special Olympics coaches made sure that as many parents and caregivers as possible were available in order to offer support to the athletes. Sympathy cards were passed around for signing and support now and in the future was offered. A two minute silence was observed and then the practice went forward. The athletes played their best: exuberantly, energetically, diligently, because that's what their teammate would have wanted. They felt her loss with varying degrees of understanding but the feeling of playing for her was there and palpable in the gym.

     Special Olympics is remarkable because it meets the athlete where they are and engages them with meaningful training, competition and lasting friendship. As the website states: "Special Olympics is humanity’s greatest classroom, where lessons of ability, acceptance and inclusion are illuminated on fields of play by our greatest teachers – the athletes." This has been an enormous source of social support to our daughter and a great boost to her physical well-being and confidence. The death of her teammate is tragic, sorrowful and felt by the many who knew her--- we did not know her well but we will not forget her.

Neighbour

 

     We just doubled our flock size with about forty more brown hens. They are good layers but sort of uniform and boring in their appearance. We already have an assortment of different looking chickens; a few Australorps, Araucanas and Americaunas that we've hatched out ourselves. The new brown hens had not seen anyone of a different colour before and have been pecking at these "outsiders" since they arrived just over a week ago. Without our old rooster Kermit to keep the peace I marveled that even in the world of poultry, it is difficult to love our neighbour.
     We've been talking at church about loving our neighbours. "Thou shalt love thy neighbour as thyself". It is part of the Shema or the second of the greatest commandments, quoted in several places in the Bible and one of the central tenets of both Judaism and Christianity. And with all this talk of refugees and immigration in the news, a very timely subject. I do not pretend to know all there is to know about this heated and divisive issue. As immigrants ourselves my family of origin experienced a life that could not be had if our parents had stayed in England; loss of immediate contact with our extended family, everyone and everything that was familiar was the price that we had to pay. Some immigrants and refugees do not have as many options nowadays and the price tag is much higher.
     Unfortunately life is not as simple as it is in the chicken coop where a little more hen scratch or a kindly old rooster can usually settle the score. Our pastor reminds us to lean into God and listen; find out who our neighbours are and pray for them. We hear and read that Jesus declared that loving God and loving our neighbour was all that mattered and so the answer there seems fairly simple also. As a member of the human flock, I choose to believe in love.

BUILD

   

     Our older daughter's life skills program started last week and she is truly enjoying it. She finds the respectful and positive atmosphere refreshing after her high school experience and enjoys being treated like a young adult. The acronym BUILD stands for "Building Upon Individual Learning and Development". The streams of learning include: Life Skills, Employment, Transportation and Health and Wellness. With half a dozen young people in the program and a teaching ratio of 3:1, our daughter already feels comfortable with everyone and is happy to be involved. The staff are young, caring and patient women. There are trips to the library and local businesses, opportunities to practise a variety of skill sets like taking the bus or shopping out in the community and an upbeat and cheerful group of peers around her, so our daughter feels fortunate to be part of it all.
     She is now nearing eight months of freedom from seizures and anything seems possible. We are not sure whether she outgrew the seizures, the meds are now working, there is less stress in her life or our prayers have been answered. Any way you look at it we are blessed! I remember looking at other people's Facebook pages and being envious of their child's "One Year Seizure Free" status. Maybe it could happen to us!
     

Bus

     Our younger daughter has been making use of her Compass card, accessing public transportation with friends and making her way to the bigger malls adjacent to our community. This has gone well until when on the bus the other day, she caught the eye of a beer swilling fellow who thought her brief and polite acknowledgement of his staring at her was an invitation for further contact. This was a guy who was probably in his thirties; our daughter though tall, is obviously fourteen or fifteen years old. After pawing furiously through his over-sized lunch box this man produced a scribbled note which our daughter refused to accept. He was a stranger after all. He then dropped it into her lap and then jumped off the bus at the next stop. The note contained his name and phone number and instructions for our daughter to "text me QT". Such a poet.
     Needless to say, my husband and I were appalled. Fortunately there was an older gentlemen on the bus who witnessed this exchange and expressed his dismay with the episode. We are obviously not sure if this guy had had a few too many and was not seeing straight or he actually believed that our daughter might follow up on his invitation. Unfortunately after this experience, she will probably not be inspired to make any kind of eye contact with anyone on the bus ever again, which is a loss for everyone. Needless to say, I have retained his contact information for future reference. Next time someone a little more his age and a lot less cute will certainly be texting him back.

Wish 3

     We actually made it to Australia for the fulfillment of our daughter's wish. What a fabulous trip, what an amazing day! It was everything we had imagined and more. From the minute we pulled into the parking lot at ten in the morning to about five when we left that afternoon, we were in awe of Australia Zoo and the legacy that Steve Irwin has left behind. We couldn't help but feel that he would be so proud of everything his family and staff have accomplished at the zoo and beyond.
     We walked through the doors and were blown away by it all. And both our daughters loved connecting closely with their favourite Australian marsupials: the koala and the kangaroo. They got to pat them, feed them, hold hands with them and in the case of our eldest daughter, even hold one. And we have photographic proof of her dream come true as a gift from the zoo.
     As we sat in Steve Irwin's Crocoseum and saw and heard his words made beautiful by the soaring birds and the lumbering crocodiles that were part of the show, I felt profoundly moved. Yes, this was about a khaki-clad man who said "crikey" a lot; one who spent a great deal of time rolling around on the ground with crocs, calming snakes and rescuing all manner of animals but he was incredibly passionate about all living creatures and it is obvious at Australia Zoo. Steve said "If we can teach people about wildlife, they will be touched. Share my wildlife with me. Because humans want to save something that they love." Conservation is the goal.
      The Children's Wish Foundation and Special Olympics Coach Susan have the eternal thanks of our whole family. They gave our daughter and our family a trip that we will never forget. They will never know what this wish has meant to us all--- the fact that our daughter has not had a seizure since she heard about this amazing gift says it all: thank you, thank you, thank you!

Ask

     One of the values that my parents instilled in me as a young person was the importance of being independent. They were after all a living example of this; at the ages of twenty-three and twenty-six, my parents brought their two and a half year old daughter and their six month old son to Trois Rivieres, Quebec from England. They knew virtually nobody there and their English public school french was going to be of little help in this mostly francophone community. However, my father had a job for a steel company there and so that's where their future lay, far away from any friends and family of their own. Our family grew and moved around; life in Canada was good.
     Independence is an important step in any young person's life. Ask any parent. The goal of our double digit years is to move away, if not always physically, then certainly psychologically from our family of origin. This is how we develop our own sense of self, one where we rely on ourselves to cope with the complexities of every day life. Sometimes though we need help, especially if there are intellectual or physical challenges. Independence can seem like an uphill battle when bodies and minds are not able.
     Our daughter is set to attend a skill development program in the fall to learn how to cope with a myriad of topics. The four streams of learning are: employment, health and wellness, transportation and life-skills. Over the course of her short life, she has learnt that independence is crucial but when needed, assistance is available. All you have to do is ask.

Grad

 

     Now that our oldest daughter has graduated, we realize that so many people helped make this day happen. From the people who daily assisted her to the folks that offered up special kindnesses recently, we have been blessed with so much! The abundance of care and concern that has been the hallmark of our daughter's years through high school has been extraordinary. Getting any child through high school alive, unscathed and still with an idea of the promise life ahead presents for them is a huge challenge. Getting a child with an IEP through high school can be especially challenging.
     That night none of that mattered as our daughter and her friend danced for hours, encouraged by the camaraderie and friendship of their fellow graduates. It was a rare and perfect night in a largely imperfect world; a night when our daughter felt like she was like everybody else, and for a few hours she was. It was the stuff of Disney movies but instead of running out of the ballroom at midnight and leaving a glass slipper or her cell phone behind, she ended the evening by giving one of her school principals a big hug. It was a much deserved hug. This nice woman made sure that our daughter and her date could side-step the pre-dance event and arrive in her own vehicle, a borrowed Mini. It was not a pumpkin but it was not much bigger and through the kindness of a friend was ours for the evening.
     For a few hours there were no problems, no differences, no handicaps, no disabilities, no feelings of being anything less or more than what she was: a teenage girl at her high school prom. 

Work

 

     Is there anything more satisfying than a good day's work, done with enthusiasm and the sense of accomplishment that comes with it? An article in a recent "Peace Arch News" edition reminded me that for most everyone, but especially for intellectually and/or physically challenged young people, there is nothing better.
     Our daughter has been doing work experience as part of her high school schedule for two years now. They have mostly all been positive experiences but the point is that they were experience. As anyone will tell you, it's hard to get a job without experience but it's almost impossible to get experience without a job. That is the beauty of work experience. It takes place during the school day and helps a student figure out what they want to do in the future. Our daughter has had half a dozen of these placements and everywhere she went she learnt different skills and discovered something new about herself and the world out there. The Job Coach EA that has been accompanying her this year is especially supportive which makes the time spent out of school especially rewarding. And our daughter has met some amazing folks out in the community, eager to give her a chance at learning while working.
     If you are in the position to give a young person a job, please recognize what an opportunity that is for that person. If you are in the position to give an intellectually or physically disabled young person a job, please recognize what an opportunity that is for them and for you. You could be changing a life!

Whisper

     I am almost afraid to say it out loud so I will whisper it and hope that you hear: Our daughter is four months seizure free for the first time since she started high school....five years! Of course, she could be at school having a seizure as I write this; it all could change in the blink of an eye. However I am willing to chance it and celebrate the possibility that our daughter could have relatively longer periods of seizure freedom. Could we even dare to hope that she has grown out of her epilepsy? It is possible, as there is no physiological occurrence that could explain her seizures--- no tumours, no lesions, nothing readily visible. But it is too soon for that and I must remember to take each day as it comes...life is change after all.
     As our daughter prepares to leave high school behind and start this next chapter of her life, we pause to look back at all that she has accomplished and what did not go well. Her teachers and classes were great and the environment at school though crowded, was relatively supportive. Friendship and the ability to find a welcoming place to eat lunch every day did not happen until the very end of Grade Twelve but all in all, it was fine. Our daughter had the majority of her seizures in the past five years, many of them while at school but she was never bullied or ridiculed because of it. Many people at school were more caring towards her as a result. Her high school administration has also been very accommodating in attempting to keep her graduation event participation short and therefore more stress free. With less than a month to go until the end of school, life for her seems positive and full of possibilities. Maybe we can turn that whisper into a shout....

Here

     Some people experience such unbelievably huge and horrific loss in their lives that I have no idea how they cope. Losses like the death of a child or the murder, suicide or accidental death of a beloved are too painful to imagine. For some, the end of a marriage is also a death of sorts: a loss of hopes and dreams, a betrayal that is inconceivable. Of course deaths like these happen every day and every day the loved ones left behind must try to get out of bed and put one foot in front of the other. The weight of such pain is unfathomable and profoundly personal. No one's experience mirrors another's regardless of the similarity of circumstance. There is no "I know just how you feel....".
     I can often feel helpless in the face of such overwhelming grief and sadness. What should I say? There seems to be no words. What can I do? I want to do something. There are refrigerators full of casseroles that testify to such a desire in others as well.
     Eventually there is support in the form of bereavement and support groups, hospice volunteers and even counselling, if appropriate. In the meantime, all I can say is "I'm here." Then all I can do is be there, be present, be quiet and listen.

Stones

     Our daughter has a nice habit of picking up a colourful or interesting stone for me when she takes one of the dogs for a walk. This doesn't happen often of course, given her history with seizures. When it does happen though, it is a good reminder to me of her efforts to be independent but still think of others. And I have a small collection of pretty or unusual rocks. When we go away on a trip our daughter makes sure to bring her wonderful friend and bus driver extraordinaire an interesting stone. She too must have a nice little collection of her own.
     As our daughter's time at high school winds down to the last couple of months, I have been thinking of what a difference this woman has made to our daughter's years there. We would never have known this fun, friendly and supportive person if it were not for our daughter taking the little bus, the special needs bus, to school every day. Folks like her and the kind woman in the Youth Centre at school make such a difference not just to individuals but to entire families. The quality of all of our lives is made better by the caring and acceptance that our daughter experiences from them. I am not sure if they understand the impact that their smiles and warmth have on lonely students but it is huge. And I would like to say again, "Thank you Robyn and Fil! You are awesome!"

Wish 2

     What would you wish for if you had the chance? I suppose that some of us would have mundane or practical wishes like a husband who would put his own dirty laundry in the hamper or a car that could be relied upon to start every time. Some years back I had a van that would only start if I banged on the engine with a hammer a couple of times!? I wished for a different vehicle and eventually got that fulfilled after coming up with some money.
     For some of us, kids in particular, a wish is the fulfilment of the fantasy of a lifetime. Maybe it's having a photo taken with Justin Bieber or travelling to a far off exotic place that you have only ever seen pictures of, like Australia. Unfortunately Justin is just not that happy to have his picture taken with anyone anymore but travel is possible in some cases. Extraordinarily expensive, time-consuming to plan, maybe overwhelming to plan but truly the trip of a lifetime can be had with a wish. This is the goal of the Children's Wish Foundation of Canada, to make wishes come true for children and youth with life-threatening conditions.
     Two nice ladies from the Children's Wish Foundation came to visit our daughter at BCCH during her week of EEG video monitoring and SPECT scanning. They were so kind and interested in her and her story. It wasn't enough that they were working hard to make this extraordinary trip happen for our daughter but they wanted to meet us and visit with us as well! There haven't been many positive aspects to our daughter having epilepsy but the kindness of strangers and the blessing of friends has definitely been part of our experience. We are so grateful to make the acquaintance of these fine folks, regardless of the circumstance. You truly are the silver lining.....

Wish

     I have often written about our daughter's struggles with epilepsy and Nonverbal Learning Disorder; there has been a lot to say in that regard. Seizures, bullies, dashed dreams, cruises not taken....it's been covered. I have also written about the wonderful people we have met as a result of our daughter's unique journey. There has been turmoil yes, but also much kindness.
     One of the truly kind and unselfish things done for our eldest daughter has been her nomination to be granted a wish by the Children's Wish Foundation of Canada. One of her Special Olympic coaches has put our daughter's name forward for her fondest wish to be granted and amazingly, she was chosen!
     When this amazing woman heard how our daughter and her father were left behind by the cruise company last year and then was witness to her seizure that caused multiple injuries earlier this year, she did this uncommonly generous and considerate thing. How do you thank someone for such a gracious and loving gesture? That it would occur to her to do this wonderful thing in the midst of the busyness of life, not to mention the visits and gifts for our daughter to cheer her at the hospital and at home...It's astonishing to me!
     This beautiful wish-granting has lifted us all up and it is proof that angels are present in this world....Thank you Coach Susan!

Mother

     When you are young you know that you can be anyone or do anything because your mother believes in you. When you are no longer young, you now know more about yourself and the world, but your mother still believes in you and your dreams. When your mother dies part of you dies too because she is no longer with you to listen, to be with you, to hear about the things that are important to you now.
     Your mother is your first friend; she will always be your biggest fan. If you can do anything well or even if you are only trying something new you want her to see it. You crave her attention, her praise, the look in her eyes that tells you that she loves you always. Your mother's love is unconditional; there is nothing that you can do to stop her loving you. You will disappoint her, you might hurt her, you may even betray her but she is always for you.
     And just as she is part of you, you are part of her. She was with you every second that you grew and developed; she heard your first cries from deep within her; she felt your first somersault. Whether she can give you every prize the world has to offer or can hardly find food for you, she wants everything for you. She wants every good thing for you and those things are usually not things. She craves your happiness, your contentment. She wants love and friendship and loyalty and faith and respect for you because this is what she has for you. Just as there is no one like her in the world, there is no one like you either, despite what the world may tell you. To her you are perfect, no matter what anyone else says, you are perfect because you are you, and you are hers and she is yours: your mother.

Tooth

     Our daughter had a tonic clonic seizure at her Special Olympics Sport Start program losing a front tooth, cracking another, splitting her top lip, fracturing her nose and and cracking a bone in her hand. We have been favoured with very little in the way of injury up until now: cuts, bruises, the resulting soreness and the usual headaches. She has been so fortunate! When this particular seizure ended there was a completely intact front tooth on the gym floor about a foot away from our daughter. While our Special O coaches called 9-1-1 and made sure they found us, one of the mothers was very smart and quick enough to put the tooth in a small plastic bag in my purse so when our daughter and I were loaded up in the ambulance it came with us. My husband had the presence of mind to call our dentist, a dear family friend, and report her situation. When our daughter was off loaded into the emergency department, there was our dentist, ready, waiting and able to place that tooth back where it belonged. Not only that but for some time, he applied the necessary pressure to keep it in place. We have no idea if the tooth will take or not; only time will tell. But in an age of chronic busyness and sometimes impersonal health care, we are blessed to have a friend who will be our friend and our dentist and do both with compassion and competence. Thank you Christopher!

Low

   

     A tiny seizure, this one at home, safe on the couch, surrounded by family, over and done as quickly as can be....It's just another seizure. I guess though our daughter and I had high hopes for the latest anti-epileptic medication. So it was the first seizure in 24 days but it was also the first seizure of the new year, the first seizure on the full dose of the new medication and so we are disappointed--- so disappointed. Add to that the death of Grandma, the hospitalization of Nanny, the cold, the gray and illness and I felt brought as low as low could go....black and with no place to take it. God and I weren't talking.  I know, I know! Count my fingers and toes, my blessings--- I have a roof, I have food, what can I possibly complain about? Nothing, except some days contentment does not come easily. Intellectually I know that I should want what I have instead of having what I want but I don't want money or fame or even a new car. I want our daughter to be seizure free. I want her to be safe. I don't want her unconscious, even momentarily, anywhere but especially out there somewhere. I fear for her out there, vulnerable, unsafe, alone, unknown. I fear for her. And so it goes: we start over and count and pray and live our lives, day by day and so it goes.....

Purple

 

     Our eldest daughter has always loved the colour purple: purple clothes, purple stones (which are amethyst and not her birthstone), purple shoes (like Justin Bieber used to wear) even purple sheets. So it worked our perfectly when it turned out that the internationally recognized day for epilepsy awareness was Purple Day. Whenever our daughter has done her Purple Day talk at the local elementary schools talking about her life with epilepsy, she explains that " Purple Day is purple because the lavender flower is purple. Lavender is associated with feeling alone. Many people with epilepsy feel alone. It is hard when you feel like you are different from everybody else." Scrolling down any of the epilepsy Facebook pages you become aware of how true that is. Feeling different is a terrible burden, particularly when you are a young person. And epilepsy does not usually help you make friends, as our daughter can attest. Seizures are dangerous, scary, isolating and in many cases, uncontrollable. As our daughter continues with this new medication we say a silent prayer that this will be The One. This is no doubt a prayer that many parents utter. We were sad to note that Cassidy Megan, the seventeen year old girl who started Purple Day, had been struggling with seizures and had spent much of the holidays recovering. Recently our daughter had a seizure at a Vancouver Canuck's game which demonstrated to her that sometimes people can be very nice to someone with epilepsy however as we all know, that is not always the case. Anyway my "New Year, New You" resolution is to worry less and be more positive, something our wise, wonderful and eternally optimistic daughter does already every day.