Fees

   

     Back in the summer our eldest daughter was sent a letter from her bank advising her that after her nineteenth birthday, her chequing account would no longer be without a monthly fee; the rationale being that she was no longer eligible for a youth or student account and so her bank would now be charging her on a monthly basis. We met with our friendly neighbourhood bank rep who explained what her options would be once that birthday came and went. Unfortunately we weren't paying attention and yesterday she discovered the fees that had been diminishing her balance, small though they were. She was quite unhappy to see this especially when she noticed that there was a passbook fee additionally being subtracted from her account on a monthly basis. Our daughter has been working for almost three months now and understands what her time is worth on an hourly basis. Needless to say, a plan to revisit the bank was in order.
     I did some research on-line, looking for accounts that benefited people with disabilities and discovered that our bank, TD Canada Trust, waives the monthly fee on a minimum chequing account if the account holder is an RDSP beneficiary. We have been saving money for our daughter in a registered disability savings plan for some time now so I was pleased to see this option available. In my opinion every bank should make this available and even offer this opportunity to other disabled folks, even those without RDSPs.  It is hard enough to live with physical or mental challenges without having your hard earned money clawed back by a financial institution. We did revisit the bank and met with our rep. The account was set up and order was restored once again.
     While at the bank we did mention our views on free chequing for folks with the PWD designation. We have learnt a lesson and though it was not a terribly expensive one, it was a hard one. When you have special needs, every nickel counts, especially when pennies no longer exist. Our daughter and I would suggest that you check your bank accounts and make sure that you are not paying unnecessary bank fees. After all, should your money be in your pocket or the bank's?

Disappointment

     Air travel can be hazardous to your health. I am referring to the stress generated by missed connections and plans derailed. Such is the case with our intended journey today. Seven of us hoped to travel south to stand with our extended family as they sought to gather us all at a Council of Government meeting to change the intersection where our nephew and cousin Jordan was killed this fall.
     Severe rainfall delayed our incoming and outgoing flights so as to make it impossible to catch our connecting flight and therefore to make our meeting. The resulting choices were limited and probably would result in a long drive through the rainy night possibly on the very roads we had seen take our precious nephew's life earlier this fall.
     If his death has taught us anything it is that that risk is too great. Maybe we are holding our children a little too tightly these days but the potential loss could not be borne. So we sit here from home, missing our extended family, wishing we could be there to show our support and for them to feel our love, hoping to hear that something positive came from the meeting today. As Martin Luther King Jr. so eloquently stated, "There can be no deep disappointment where there is not deep love." He is so right!

Work Again

 

     Our daughter and our whole family hoped that her summer of self-employment at "Hayley's Garden" would turn into an employment opportunity and it has! With the support and help of Sources Community Centre, WorkBC and her employer, she now has a great job and we could not be happier for her. Our daughter did benefit from the resume, skills assessment and interview assistance given her. And the fact of her disability meant that she qualified for a wage subsidy for the period of her training and probation which probably made her a more attractive candidate as far as her employer was concerned. The employer was amenable to the hours that our daughter wanted to work and that flexibility was crucial. The end result is that she has a place to go every day where she can work hard, feel valued and get paid as well. What a blessing!

     It is a fact that it is hard for a disabled person to find regular, steady, paying employment. I know many mothers and fathers of special needs kids who would love to see their adult children find work. An employer does have to be able and willing to support an additional needs employee, especially initially and that might mean a longer training period but the payoff is well worth it. It is commonly known that disabled employees are loyal and tend to stay with their employers, saving on training costs in the long run. As Doug Tennant, Executive Director of Semiahmoo House pointed out in a recent article in our local paper, “The benefit is that employees who have disabilities have been demonstrated to be much more loyal. They will stay in their job a lot longer. If you look at restaurants and other hospitality industries, the amount of money they have to put into recruitment and retention is monumental.”

     Our daughter loves her job and I am sure will stay satisfied with it because it is something she really wants to do. She discovered her desire to work with plants and flowers over the course of her over-year when SACL and the Surrey School District encouraged her to make goals for herself and then go after them. It really was a collaborative process that brought her to this point in her life and we are all so grateful for this new opportunity. And to be twenty-one months seizure-free on top of it....wow!

     

Nephew

     Many families have a story of the tragic loss of a young person, gone before their time, a death without reason, without purpose, one that defies understanding. Such is the case of our family now. We have lost a nephew, a cousin, a young man of such promise and potential that it cannot be overstated; he was one of our best and brightest. And we are sad beyond measure and struggling with the senselessness of it all.
     The death of this young man has devastated all of us who knew him; we are many and we are bereft. He was such a good boy, a caring son, grandson and brother, a faithful friend, an excellent student and a person of integrity and worth. He was fun and funny and had a wonderful sense of humour; his smile could light up any room. He loved music and motors; he knew how things worked. He had recently packed his belongings and moved to another state to start his courses in computer engineering. Even in his short time there he had made an impact. He had made friends. His memorial service there was witness to this fact.
    Our nephew was killed in a motorcycle accident. It happened as a result of an immense error in judgement made not by him but by the driver of the car that hit him. Every morning when we wake up, we have forgotten and then we remember and know again that he is gone. And we are never the same.
     We love you Jordan, we miss you. And we always will.....

Please sign the petition to prevent more needless deaths: https://chn.ge/2CcphBI

Club

     Books and reading have always been important to me. I remember when I was a girl balancing a flashlight under the covers while secretly reading a Nancy Drew mystery well past the time I should have been asleep. There was and still is nothing I like better than a good book: mysteries, biographies, historical novels, I love them all. So I was particularly happy when our eldest daughter began to show an interest in books. Reading has never been especially easy for her; her learning disorder makes phonics difficult. She relies on her memory of a word seen before to make sense of it. She is not a fast reader but steady and regular.
     The book club she is part of is a great encouragement. Her friend's mother came up with the idea and it is brilliant. Several of her friends who are of a similar reading level and with like interests read the book and then get together to watch the movie and discuss aspects of the book with questions that can be found on-line. We take turns picking the book and hosting the evening.
     Their last book club meeting was hosted as a tea party in honour of the classic Alice in Wonderland by Lewis Carroll. The girls dressed up as their favourite character and the tea treats were reminiscent of the book's details: checkerboard sandwiches and flagged cupcakes, tarts with hearts and cheese and tomato toadstools, what a spread! We all ate like queens and had a marvelous time. The mums even got a chance to chat while the movie was playing! Yay! The only thing better than a good book is a book which becomes even more meaningful when shared with others. We are better together...

Jerry

     As a child I remember my father laying under a car more times than I can say.  Later whenever I had an automobile issue, I would call my dad. However there comes a time when you are too old to ask your father to help you with your car problems and when that day comes, you have to call Jerry. Jerry never hesitated to help if help was needed; no matter what time of the day it was, you could count on him. And we did.
     Jerry was more my husband's friend than mine. They spoke on the phone and saw each other fairly often. Whenever he drove up into our driveway he would always have a smile on his face and something friendly or funny to say. He was an easy guy to like. Our families had met at church years and years ago. Back then Jerry and his wife had four of the cutest little girls we had ever met. They are now lovely young women.
     When my husband had an accident in his shop a couple of years ago he was hurt quite badly, bleeding from his head and unable to move but he was able to press the one button that got Jerry on the phone. He had just gotten off of a plane but he answered anyway. Jerry then called me and so an ambulance was soon on the way. My daughters believe that Jerry saved my husband's life. All I know is that in a world of busyness, he always had time for us. And for that we will always be grateful.
    Jerry died recently and his loss is felt deeply by so many people. He had struggled with a previous heart attack and had made some changes in order to live a healthier life. Unfortunately he did not survive this latest cardiac arrest. He was not an old man and so his death is especially sad. His daughters had looked forward to much more time with their dad. We all thought that we had many more years with our friend Jerry. If I could talk to him one more time I would thank him: for the smiles, the jokes, the car repairs and the call. We'll miss you Jerry!

Precious

 

     There is no sweeter compliment that you can receive as a parent than when someone lets you know that your child is special to them. Whether by word or deed a person conveys to you that your child has made an impact on their life, you then feel something powerful: pride, validation, encouragement or even joy.  That is how I came to be sitting in my car in tears because a fellow volunteer at one of the thrift stores our eldest daughter helps at, gifted her with a wonderfully sweet memento, something precious that her mother had given her. I was so touched by her gesture. It is, like her, extraordinary.
     This also happens when one of your relatives makes a date to hang out with one of your kids or they invite them to spend time at their home halfway across the country. You cannot help but feel that you have done something right; your child has turned out okay, whether because of you or in spite of you!?
     Parenting these days is not easy. The word parenting did not even exist when I was a child, which tells you how old I am! And the old adage about it taking a village was never truer than it is now. There is so much pressure from so many different sources; it is relentless and often overwhelming. So when kind, wise and wonderful people, whether related to you or not, take an interest in your children, it is a special kind of compliment. It says, "You have raised a person I like to be around." And that these days, can be something amazing.....Thank you Ida!

Talk

     As a parent of a special needs child, the need for support is great but is not often available. The only folks who understand it seems, are parents of other additional needs children. We congregate at Challenger baseball games, Special Olympic practises, the odd specially arranged coffee here and there but the times that we can actually sit down for a few hours and share are few and far between. (Never was a cliche more exact!) When those times do occur they are hugely cathartic, much fun and very beneficial. It is never better than being with someone or a couple of someones who just get it; no explanation required, no question too silly or inappropriate, no remark misunderstood. There is just a feeling of being accepted and understood that defies explanation. You are with your peeps.
     Such was my experience the other day and although we did not solve the problems of the world, I certainly feel as though my load is a little lighter. There is something about being with other mothers (and fathers) that increases my sense of hope and gives me a feeling that everything will be alright, regardless of how things are going that day. More importantly, the opportunity for me to connect with other parents means that our eldest daughter is connecting with friends and acquaintances with whom she can be herself. What a gift for us both! There is no better feeling than knowing that you can be yourself; there is no pretense, no judgement, you are you and that is more than okay. Thanks friends!

Flower 2

     The little flower stall that our daughter is running has been such a success! She has enough orders and flowers to be busy almost every day. There is always watering and restocking of supplies to be done and as a silent partner in her enterprise, I am enjoying it a great deal. We made a little video for Facebook which was fun and being outside all the time is wonderful. The girls have taken to spending their afternoons reading a book under the big red umbrella.
     There have been some quiet afternoons but there has also been a triple digit day....$100.00 buys a lot of sunflowers! We have also seen some folks that we haven't seen in a while and reconnected with some neighbours. Unfortunately, we have lost some stock due to the plants being so big and tall and just falling over. Also the unrelenting sun has been hard on some of the plants, but such is the life of a business person. Our daughter is learning about the responsibilities of self-employment and how hard that life can be. Overall though it has been a lot of fun and has made for many steps on our respective Fitbits!
     I wanted to thank everyone for their support of our daughter and her summer project so far whether it has been through Facebook or by buying sunflowers or just by thinking of her. She has been enjoying her sunflower summer and is a year and a half seizure free. What else could we possibly ask for?

Flower

     One of the benefits of the social skills program that our eldest daughter participated in, instead of an over year, was the time she had to think about what she wanted to do in the future. She realized that she would like to work in the field of flowers, no pun intended. As an almost 19 year old our daughter has had little experience in this area except for what she has seen at home. I am an avid though not very good gardener; I am lazy with weeds but love to putter in the garden and find watering a welcome relief from the heat in summer. However it came to be, our daughter figured out that this is something that she cares about, something that she wants to do.
     With that in mind, we decided to attempt a very small entrepreneurial project over the summer: she would grow sunflowers and sell them. On April 25 we planted the various varieties of sunflower seeds that we had ordered from a local seed company. She has planted, watered and weeded and the results are spectacular! In our two raised beds she has grown several varieties of different sizes of sunflowers and they are incredible. From the smaller Teddy Bear sunflowers featured in a famous painting by Van Gogh to the massively tall Russian beauties, we have them all. They have been painstakingly cared for over the spring and now have bloomed, generously, gloriously laden with flowers.
     She has sold some and has found the experience positive and interesting. She could use a few more customers at this point but is not daunted. However this summer unfolds, it will be what it should be: an opportunity to learn; small steps forward in the journey.

Husband

     My husband likes to kid me and make jokes about the number of husbands I have had; he refers to my similarities with Elizabeth Taylor and references a joke that includes a large ship which I will not relate here as this is a family-oriented story. As true as these remarks may or may not be there is only one person with whom I wanted to have children and that is my husband.
     From the start he impressed me with his love and concern for his son, a child he raised with the help of family, since his son was one. When I met my husband, that son was almost 20 years old but my husband's affection for and pride in his child was unmistakable. That has not wavered in the almost 25 years that we have been together.
     Children love my husband and he loves them. If there is a baby in the room he will be holding her. If there is some fun to be had outside he will take part in it. If there is a game going on somewhere in the house, he will be playing too. He loves kids: their energy, their enjoyment of life, their imagination, their ability to be in the moment. Coincidentally those are all qualities which he possesses in abundance.
     When our daughters were babies he took them with him everywhere. When they woke in the night, hungry or needing a cuddle he was the first one there. Working anywhere but from home was difficult for him as he wanted just to be with them. Even as our daughters have become teenagers, he would still rather be with them than anyone else in the world.
     My husband is not without faults, even he will tell you that. When it comes to children though, he is the best husband and father, ever. And we know it! Happy Father's Day everyone!

65

     I found a cool inlaid wooden box with twelve compartments at a thrift store and as my husband is soon to have a significant birthday, his 65th, I bought it. I thought with his eight siblings and three children and I, we will fill those little compartments with poems and pictures quite easily, and he will have a lovely box. Of course the pages and pages I received, once asked for, were more than the box could contain, neatly anyway. I tried various ways of getting these pieces of paper to fit in the box but short of shredding them, it just wouldn't work.
     It was difficult for me to give up on the idea of the box; it was pristine. My heart was set on it. What to do, what to do?  Do something else of course. A memory box must become a memory book instead. However I don't like it when things don't turn out the way I want them to, but isn't that the way life is? Does everything turn out the way you want it to? Stuff happens. Big or small, some things we roll with better than others. It's how we handle these upsets and diversions that keeps things interesting; going with the flow makes life easier and probably longer too. I will endeavour to let things go. Really.
     Anyway the old guy will get a gift one way or the another. He will be happy either way. And isn't that what matters after all? Happy birthday Paul!

Walk

     Our older daughter participated again this year in the 20th Annual Special Olympics Walk-a-thon, their yearly fundraiser, in support of all B.C. Special O sports. It was a beautiful day weather-wise and an upbeat and wonderful day otherwise. Our daughter had spoken at her father's Rotary Club and as always the club was supportive and several of the members came out to walk with us. Our daughter had also garnered some very generous support from her aunties, a couple of whom also came and walked with her. So she had a friendly posse to accompany her through the park and we all benefited from the experience; walking and talking with nice folks in the sunshine is a great thing and when it supports a worthy cause like Special Olympics, we all win.
    As we strolled along the paths I could not help but look around at the diverse array of human beings around us. With every step I was slowly overwhelmed with a sensation that my body was overfull: full of pride for our daughter's accomplishment, full of love for everyone who came to support our daughter and full of gratitude for the opportunity to meet all these amazing people, people whom we would have never met, if not for our daughter and her disability.
     Again this year our daughter was recognized as being one of the top fund-raisers for this year's Walk-a-thon. As I watched her though, surrounded by old and new friends, and friends yet to be, I realized that it was not the money raised that was important, it was the richness of friendship, the comfort of community, a feeling of safety and welcome in a world that sometimes forgets who we are....
   

Summer

     Among the several pregnancy losses I experienced the first one hit me the hardest. Her name was to be Summer and we memorialised her with the planting of a Japanese maple tree. Deeply red, small and portable, it followed us from the house we rented to our own home in a thick wooden box. For many years it held a place on the island of our circular driveway, easily seen from the kitchen window, a view I gazed upon thousands of times. Today the planter finally gave up as the bottom of the box had rotted.  I tipped it out, took everything I could plant elsewhere and worked to spread the excess soil around. I did not remember that I had put my hospital bracelet inside a film container and a small white stone in the soil with our baby's tree. Finding it today brought me back to a moment many years ago, before our daughters were born when any and everything seemed possible and most of our lives were before us. Those things have changed but our lives do hold the promise of the daughters we now have. Their paths will no doubt have vastly different trajectories but will hopefully be long and content. Today the promise of another little life was unexpectedly rediscovered by me, sweet and rife with memories; a sunny, busy Sunday became a unique and bittersweet day, a day worth savouring....

Letter

Dear One,
     The tears you cried this morning were seen, heard and felt by me deeply. Wishing we had someone else's life is not unusual; it is part of the human journey and one that many of us experience from time to time. Your desire to have a typical life like your siblings is probably common too but no less heartfelt. Your road is a different one and will be rockier and more treacherous at times. Getting an education, making friends, playing sports, being healthy, finding a job, these things have all been more difficult for you. I too have sometimes wanted an easier path for you, but not a different one. I do not want someone else's life for you because then you would be somebody else. You would not be you. I love you: untypical, funny, special, friendly, intellectually disabled, helpful, good-at-so-many-things you.
     The world judges us harshly at times but sometimes we judge ourselves the most harshly. I know that you have heard words like retarded, stupid and dumb. Anyone who uses those words to describe you does not know you very well. You know more than most people about courage, faith, hope and love. When you use those words to describe yourself you are doing yourself and everyone who loves you a disservice. We know who you are and love you for that very reason. You are exactly who you are supposed to be and your life is yours, to live as you choose. Your choices may be fewer but they will be yours and I hope will bring you a life of contented fulfillment along with some funny stories to share around the dinner table.
     I cannot begin to tell you how rich you have made my life, every single day that you have shared it. Not only have you grown and learnt and become the unique person that you are but you have helped shape me and make me a better person and I would never change that, ever. Thank you for being you.
Always,
Mama

Daughter Once Again

     The emotional ups and downs of parenting never fail to surprise me. Our youngest is now an almost fifteen year old, taller than me, with a beauty that is ethereal and a mischievousness that is alternately maddening and delightful. She can whirl through our little home with the viciousness of a tiny but tall tornado causing the bravest of us to want to run and hide. She can also pirouette over to us with a gentle and sincere gesture of love, a hug whose effect seems to last for hours. What a mystery! A child but also a woman, an angel and a sergeant-major, a model and a mimic, a comic and a critic all in the same day. The mood swings of teen-age life are certainly not for the weak; a roller-coaster at the best of times, I cannot wait until she falls in love. Ha! Or should I say lol?!
     Don't get me wrong. I am totally, 100% annoyed with the amount of time she spends on that thing I like to call The Box. (a lot of it), the state of her room (appalling), her nutritional intake (next to none), the conformity of her wardrobe (need I say leggings?), and the way that she looks at me at times (dismay and disgust).  But this is a girl who texts me from a sleepover to say good night and that she loves me, who amazingly enough, kisses me when I take her to school and who will drop everything to cuddle a baby, pat a dog or hold a door for an older person. She still laughs when the pediatrician magically pulls a quarter out of her ear and loves to make me laugh until I cry. She spends the rest of her free time doing homework, aims for straight A's and always has. She loves her dog passionately and hilariously and wants nothing more than someone to dance with her. She is kind and grumpy and I could not love her more, even with the eye-rolling. She will never see this but here it is Pie....

Marathon

 

     Today our eldest daughter participated in a half marathon in a neighboring town. It was a cold and icy morning though the roads were bare in our area and the sunrise was lovely if a little tentative. It is hard to get up most mornings but especially difficult on a dark winter Sunday morning when everyone else gets to sleep in. She had laid out all her clothes the night before and wasn't really looking forward to the run but was committed. I drove her to the meeting place and left her in the capable hands of her BUILD leaders and teachers.
     Getting back home, I was mad at myself for not being more organized to register in time and accompany our daughter on the walk. I could certainly use the exercise! We do so much together though that I worry about her independence. Years of seizure activity and the accompanying anxiety have relentlessly kept me at her side. She is now a year seizure free and we both need to learn to step away from each other sometimes. It is difficult for both of us.
     It being icy, our daughter fell and had trouble getting up again. Of course there were many friendly female hands to help her up again and encourage her to keep going. She linked arms with one of her leaders and finished the marathon, proud of her medal if a little sore. I was so glad to know that she was able to do this run, not without help, but independently, without me. These are baby steps for both of us, away from each other. In her case it was about twelve thousand steps but I was thrilled to hear about every one of them.

One

     She is one year seizure free! Our daughter started having seizures at eighteen months of age. Other than a two year break between the ages of five and seven and again between the ages of eleven and thirteen, epilepsy has been a large part of her life. Our daughter experienced two-thirds of her seizures during her five years at high school. She had her last seizure (and her last trip to the emergency ward) on February 2, 2017. Thankfully she only broke her hand and nose, split her lip and lost a front tooth.
     What does it mean to our daughter to be one year seizure free? First and foremost, she has less fear that she will have a injury-causing seizure in an unsafe public place. It means her being able to be home alone from time to time. She loves that!  It also makes her feel that she can be like other people her age, not to mention not having to take her mother along to the movies or anywhere for that matter, nice as she is!?
     For us, it means the possibility that she can one day go without antiepileptic medications, the opportunity for her to work or go to school without always being accompanied and of course, hope for a seizure free adult life, a life concentrated on enjoying living rather than fearing injury or even death.
     Whether our daughter is seizure free due to less stress in her life, the medications finally working, outgrowing her seizures or the answer to prayer, here it is. This reprieve from epilepsy for a year has been my most cherished wish, my most fervent prayer and I am sure that that is true for my husband and both our daughters and other family as well. If you too helped Hayley get here, then we thank you. We thank God and we thank you....