Wind

      As each of her recent seizures result in greater injury  to our daughter, I find myself panicky at times. While she is home, I must know where she is, what she is doing, checking in, always checking in. The monitor gives some relief from worry at night. When she is at school, I check my phone constantly; when it rings I have momentary dry mouth, bodily anxiety as if I had drunk way too much coffee.
     As I explained to someone the other day, all we can do is increase the medication dose, make sure she is taking it, and is getting enough sleep, drinking lots of water, eating the right foods when she needs them and that she is not overheated or stressed. And we pray. A lot. At least I do.
     The seizures are getting milder and shorter. And we have room to increase the dosage on this medication. Our daughter is ever cheerful in the face of this challenge and we will walk beside her and hold her hand when she wants us to. We will pull in our oars and put up the sail. The wind blows where it wishes....
John 3:8

     

Smile

     As it was Mother's Day weekend, I was looking for flowers early in the morning to make a couple of small arrangements. We had a couple of events to go to and I wanted to bring flowers. I called the local flower market around 8 a.m. to see if they were open and then I called a nearby grocery store that happens to be in the opposite direction. After talking to both places I headed off towards the grocery store knowing that they would have less of a selection, flowers that were not as fresh and possibly a slightly higher price. Had I lost my mind in a few short minutes? No, what happened was the way I was greeted on the phone coupled with my past experiences in both these places combined to make my decision for me.
     The flower market has a brilliant selection of beautiful flowers, priced to sell; unfortunately the folks that operate it are generally sullen, if not rude. On the other hand, the grocery store is owned and operated by a friendly man who hires young and mostly cheerful young men and woman, some of whom have worked at this store for many years. He is always willing to donate something for the school market or the Christmas hamper. The flowers there are inconsistent and I rarely buy them. I do however go out of my way to buy my chicken feed, bread, meat and milk there. When given a choice I would much rather shop where my business seems appreciated and that is true of many places that I shop at on a regular basis. Costco and Walmart cannot be avoided it seems but otherwise I like to shop where the people who work there smile at me and thank me for my business. That's just the way it is.

Gratitude 2

     Our daughter and I just came back from an action-packed, completely inspiring and tiring choir trip to New York City. The feeling that I had upon our return home was one of immense gratitude: gratitude for the trip and the opportunities it gave our daughter, thankfulness for the chance that I had to be with her and all the other choristers and chaperones, appreciation for all the kindnesses that so many people showed us in helping us financially and otherwise, to make the journey and finally, so grateful for our home and the peace and closeness to nature that it provides.
     New York is a crazy, wonderful place full of so much of everything, everywhere, every minute of every day that you never for a minute consider that there is anything to get in its way. It goes and goes a mile a minute without regard for time of day or time of year. It is relentless. Don't get me wrong--- we had a blast, saw all the sites, ate lots of good food and the kids sang all over the place. From the Vancouver airport to the water taxi on the Hudson River; from the  9/11 Memorial to Strawberry Fields in Central Park, they sang. And they sang in Carnegie Hall, beautifully, while we watched, amazed to be there. It was a heady, heart-filling experience to see our daughter up on stage with so many gifted children and such a wonderful conductor, one that I will never forget.
     Another piece that will always stay with me is how well our choir director and her husband looked after us; they were tireless in their pursuit of our every need and patient with our every question. Even once home when our daughter had a small seizure in the airport, they were right there, cradling her head, looking for a wheelchair, helping right until the end. They too were relentless in their caring and concern for us all. Their kindness was incredible.
     New York was a grand and glorious adventure; we were thankful to go there, even more grateful to come home. And that's how it should be isn't it?

Play

     I have been thinking about how my siblings and I played as children. Hours were spent outside in the fields behind our homes with neighbours and friends, pretending to be explorers, pirates or even mums, dads and kids. On weekends we would leave in the morning, clean and full of breakfast, come home for lunch and go out again until suppertime or sometimes pack some grub to take with us and come home when we were hungry again. We climbed trees, jumped over ditches, ran around and shouted to one another. Outside voices (although no one I knew used that term then).
     Now a play date (or whatever they call it for older kids, a hang out) can consist of jumping onto your iPad or iPod, or whatever you have and playing together in a virtual world where a ghosty creature is your creepy enemy and you work together to elude him or find him or I don't know what..... It might be raining outside and then I can understand it but when it is sunny outside and you'd rather be indoors, yelling " GRAB THE BUCKET!" or "HOW MUCH FOOD DO WE HAVE?" in an outside voice, inside, then I just don't know. The funny thing is that I thought that it was a building game which would be beneficial and that it would only be played when someone was so bored that they couldn't see straight. Wrong and wrong.
     I am not against computer games. I myself play "Words With Friends" although I usually lose especially if I am playing a childhood friend and neighbour from Beaconsfield that I haven't seen since the 70's. (That's a long time!) And I had a " Four Pics, One Word" thing for a while but I got over it after about a week. Okay, maybe two.
     Anyway, I now have this out of my system. Play is different now that it used to be. I know that I am showing my age, and that it is considerable. I only hope that kids don't forget how to play outside or grass stains, scratched knees and daring feats of bravery will become a thing of the past.

Life With Epilepsy

     When our daughter was born ten days before my forty-second birthday, I had every expectation that she would be just as she seemed: a perfect, round, beautiful baby girl with slate-coloured eyes and a swath of dark curly hair. And she was. In fact as she grew, she became even more than my husband and I could have wished for: bright, chatty, quick, smiley and loving. She was exceptional to us.
     At the age of eighteen months our daughter had her first seizure. We were just about to sit down for Christmas dinner at about five p.m. on Christmas Day. I had cooked a turkey for my side of the family so there were about a dozen of us. I picked her up to put her in her high chair when suddenly she just threw up and then slumped lifelessly in my arms. My brother-in-law and father both had first aid training and they took her from me and looked her over as I called for an ambulance. The fire department arrived first and checked her out as the ambulance arrived. We travelled to the hospital in the ambulance and spent several terrified hours in the emergency ward. They examined her, took blood and x-rayed her. To this day she is very afraid of needles.
     To date, our daughter has had over five dozen seizures, most of them tonic clonic. She started antiepileptic medication in September of 2012 with some side effects.
     This is what our daughter, now almost seventeen, has to say about living with epilepsy:
     It is very hard living with epilepsy because I have to take special medication to be sure that I don’t have a seizure at school. If I did have a seizure at school I could fall down the stairs. I could actually die. This makes me feel frightened at times. I have had a lot of seizures so I have an EA go with me to all my classes. I don’t miss out on anything though. My life is the way it should be.
     For Purple Day, I have spoken to my old elementary school as well as to my LSB class at high school. I tell people about seizures and it shows people that I am a strong person. I have a learning disorder on top of having epilepsy. I thought it would be nice to talk to my class because they have their own issues so they don’t judge me. They understand. 
     One thing that I would like people to know is that I’m me and I have epilepsy and I do a fantastic job of living my life with epilepsy. Epilepsy hasn’t changed who I am.
(From the Centre for Epilepsy AGM program)

Apology

 

 I haven't written many blog posts this past winter and I have not kept in touch with many people. Never mind that I struggle with this time of year at the best of times; I have been keeping to myself. You may know that I help my incredibly busy self-employed husband with his office paperwork, which is bountiful. I also have small hobby farm responsibilities---okay, 5 dozen chickens and their corresponding output (eggs and fertilizer, to put it daintily) and I have a couple of kids. No big deal, right?
     Except that when you have an exceptional needs child those needs can take over a parent's life. If your special needs child is doing well, you are doing well. If not, then not. If they are struggling socially, academically, physically or health-wise then you are like-wise struggling. Amongst other things, our daughter is still having seizures or not feeling well so I am struggling. That is why when a very nice lady at my gym asks me about her I dissolve into a pool of tears in my car later, where no one can see. The kindness of strangers has always been my undoing.
     I am not telling you this to make you uncomfortable. How would you know? By all appearances, I am fine; we are fine. I just wanted you to know that if you haven't heard from me, it's not personal. I know that there are so many people out there so much worse off than us, who have children with so many more challenges than our child and there are also folks whose child has died. We are blessed beyond measure!  But epilepsy takes a toll on families, on individuals. It's taking a toll on me. I will keep praying and be ever vigilant but sometimes I feel less than strong. Today is one of those days.

Purple Power

     We had another amazing Purple Day assembly at our local elementary school. Only about half of the kids wore purple but they all knew what it was about and why. (I have no purple in my closet except for my Purple Day tee shirt so I get it---it's not everyone's colour.) Before our daughter spoke, we watched the video "Epilepsy: A Definition of Courage" which is a powerful message about the stigma attached to epilepsy and the people who have it. The statements "I am normal, just like you." and "I deserve the same opportunities and I will fight to have them." speak strongly to the barriers that people with epilepsy experience as a result of their disorder. We applaud Caitlin Shaw and Dan Nixon for their accomplishment in making this video and are proud to be a part of it.
     Our daughter spoke briefly about her seizures and what Purple Day was all about. We fielded many great questions about seizures and epilepsy "What should you do if someone is having a seizure? Do seizures hurt? Are you born with epilepsy or do you get it?". Then our daughter was presented with flowers and very much thanked for her time. What was most charming about the afternoon was how sweet the little ones were, giving our daughter hugs and clamouring to stand next to her for photographs. I think she felt like a bit of a celebrity which in her sometimes difficult life is a real treat. She was touched by the children's caring for her and so was I.
     Our almost 15 year old daughter really has no idea what a role model she is; she takes this terrible circumstance and turns it into something wise and wonderful. She shares her story, her life and in doing so, shares herself. The information she imparts educates and enlightens others; it might even save a life. She truly is powerful.