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!"