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.