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!