We don't know what came first, the epilepsy or the learning disorder but either way, all our daughter has ever wanted is to be like other kids; to babysit and learn to drive, to stay home and look after herself sometimes, to graduate from high school and eventually have a boyfriend. Many of those things seemed impossible with epilepsy in her life. Maybe, just maybe, there will be a life for her, without seizures and whether it is because they are being managed with medication or she outgrows them completely, only time will tell. Right now we are 5 weeks seizure free and anything seems possible.
Written by a parent for parents of children with epilepsy, Nonverbal Learning Disorder, Autism Spectrum Disorders, learning disabilities and other special and additional needs.
Monday, 28 October 2013
Hope
We don't know what came first, the epilepsy or the learning disorder but either way, all our daughter has ever wanted is to be like other kids; to babysit and learn to drive, to stay home and look after herself sometimes, to graduate from high school and eventually have a boyfriend. Many of those things seemed impossible with epilepsy in her life. Maybe, just maybe, there will be a life for her, without seizures and whether it is because they are being managed with medication or she outgrows them completely, only time will tell. Right now we are 5 weeks seizure free and anything seems possible.
Monday, 21 October 2013
Enough
I am not sure where I saw this but I like it: "Start where you are. Use what you have. Do what you can. It will be enough." Arthur Ashe It's simplicity is riveting and at the same time deceptive. How often do we give ourselves permission to do the first three and then decide to be okay with the last one? How often do we say "can't, shouldn't, isn't"? I know I do. More times than not I claim it's me being practical, realistic or just myself---a-glass-half-empty kind of person.
Saturday, 12 October 2013
Run
I had the privilege of participating in the CIBC Run for the Cure while I was in Calgary recently with my mother. This is an annual run/walk to raise funds and awareness for breast cancer research. There were so many people there: loud ones, proud ones, big, small, short and tall, great-grandmothers and babies, men and women, boys and girls. My brand new great-niece was there and she was only three weeks old at the time! Eight thousand folks were present apparently and my sister-in-law and I were two of them.
I was so impressed with the age range, number and variety of participants but there was one family that stood out for me. It was a family of three: father, son and daughter in a carrier on the dad's back. They had no pink clothes, no face paint or breast hats, just the simple hand written message, pinned to the child carrier and to the boy's chest: "We're running for Deborah". I have no idea if she was the mother or wife, an aunt, friend or grandmother but it made me think about why I was there. Primarily I was there for my mother who had breast cancer 15 years ago. When I thought about it though, I realized that I was there for all the mothers, daughters, aunts and sisters, grandmothers, friends and neighbours. There is strength in numbers and it is in looking around outside of our small circle and seeing what others have been through that we recognize how precious life is and how fleeting it can be. So in a way I was there for Deborah too; we were all there for Deborah, wherever she may be.
I was so impressed with the age range, number and variety of participants but there was one family that stood out for me. It was a family of three: father, son and daughter in a carrier on the dad's back. They had no pink clothes, no face paint or breast hats, just the simple hand written message, pinned to the child carrier and to the boy's chest: "We're running for Deborah". I have no idea if she was the mother or wife, an aunt, friend or grandmother but it made me think about why I was there. Primarily I was there for my mother who had breast cancer 15 years ago. When I thought about it though, I realized that I was there for all the mothers, daughters, aunts and sisters, grandmothers, friends and neighbours. There is strength in numbers and it is in looking around outside of our small circle and seeing what others have been through that we recognize how precious life is and how fleeting it can be. So in a way I was there for Deborah too; we were all there for Deborah, wherever she may be.
Friday, 11 October 2013
Living
There is a symposium about living with epilepsy which I will be attending this month called Living Well With Epilepsy. It is being presented by the Center for Epilepsy, a epilepsy advocacy, support and education society which is doing marvellous work, right near us in Abbotsford. I am looking forward to the conference for a few reasons: the guest speaker is our daughter's paediatric neurologist, we are still dealing with seizures after an almost 3 month hiatus and a year on anti-epileptic medication and it is always therapeutic to get in amongst other families with epilepsy and feel like part of something bigger. "A problem shared is a problem halved" as they say...
For us living with seizures means a lot of stress, uncertainty, worry and fear. Epilepsy lives in the back of our minds like a dark unwelcome guest who descends upon us from time to time without a thought for whatever else is going on in our lives. Tonight though, while walking around B.C. Children's Hospital on our way to our daughter's MRI appointment, I am reminded of how small our problems truly are, how blessed we are, how lucky. Yes, we live with seizures and the terrifying scenarios that they can present but the rest of the time we are healthy, she is healthy, life is good. Life is great. And living well is knowing that, everyday.
Wednesday, 9 October 2013
Eden
Thank you God for this most amazing day....for the birth of a new baby and for everything in our world that is good and pure and new. We thank you for tiny fingernails and small cries and for the love which truly does surpass all of our understanding. We thank you for our children with whom we share our lives and for all children that they may grow daily in health, wisdom and compassion. Forgive us please for the mistakes we make and help us to earnestly learn from them so that every day we may start anew. Help us please to provide all this new little one needs especially granting us a world of peace and hope, a community where all things are possible, a place of safety, a home where love truly does conquer all.
Monday, 30 September 2013
Beauty
She sat on about nine eggs for much of July without me even knowing that she was there amongst the hollyhocks and peonies. Once the little balls of fluff were hatched, three black and four gray, she taught them everything a yard bird must know: dogs are okay, cats, not so much. The soil and grass must be scratched and scratched hard to reveal black beetles, worms and other delicacies. Store bought chicken crumble is not to be depended upon but hen scratch must not be ignored because of the yummy corn it contains. Other hens are to be avoided as well as motor vehicles of all kinds: cars, trucks, lawn mowers, you name it. You must always keep moving and make noise the whole time so that Mama knows you are there. Never mind that big noisy guy in the yard, that's just your father. Roosting is a useful skill and chest butting can be fun. Stay together, keep eating, no wandering please. Keep your beak clean, your feathers fluffed and when in doubt, run like the chickens.
Beauty, like Lulu before her, is the epitome of grace under pressure, all the while making motherhood look easy. It isn't! But then you knew that....
Monday, 23 September 2013
Sleeping
When you are not sleeping the world seems like a crueler place. Snoring partners, tick-tocking clocks and enthusiastic roosters all seem to take on a dastardly edge. Even my digital radio alarm clock, my friend in all things organized, now seems like his own evil twin; he positively gloats as the minutes trot by and I watch, pillow and insomnia in tow.
I have always needed to read before bed, always looked forward to it and the escape it brought, not to mention the screen-clearing it afforded before sleep could be had. Now I am reading at both ends of my night, and it is not pleasurable, only a means to an end. I have not watched television in bed for years (we are certified Netflix fans) and I realize now why I stopped. Those commercials, repetitive, insipid, ridiculous, did I mention, repetitive, will drive me insane. ( And believe me, these days I don't have far to go!) A certain cat food commercial with the catchy jingle, "Meow, meow, meow, meow, meow, meow, meow, meow....." seen 3 times in 15 minutes remains my personal un-favourite. (Strangely enough, they were still using that, back when I did watch TV. Not funny then, still not funny now, really!)
I suppose that as a 50 something woman, graying and now groggy with fatigue, I should not be surprised. Insomnia is apparently a woman's lot at this time of life. However it is a relatively new experience for me, especially on this scale and so I am flummoxed. What to do? Warm milk, alcohol, pills of all kinds are sometimes suggested. My problem is exhaustion brings nausea but I am too tired to care; I just feel awful! I am not looking for sympathy, just the understanding from others that I am functioning at way below my usual game. With less than half the sleep I used to get, I am lucky if I even know what game we're playing, much less the score. When a dear friend called me the other day and woke me from a snooze in the middle of the afternoon, I knew I had reached a new low. I now know that I am tired and old and now napping.... The end can't be far off! At least I'll get some sleep?
I have always needed to read before bed, always looked forward to it and the escape it brought, not to mention the screen-clearing it afforded before sleep could be had. Now I am reading at both ends of my night, and it is not pleasurable, only a means to an end. I have not watched television in bed for years (we are certified Netflix fans) and I realize now why I stopped. Those commercials, repetitive, insipid, ridiculous, did I mention, repetitive, will drive me insane. ( And believe me, these days I don't have far to go!) A certain cat food commercial with the catchy jingle, "Meow, meow, meow, meow, meow, meow, meow, meow....." seen 3 times in 15 minutes remains my personal un-favourite. (Strangely enough, they were still using that, back when I did watch TV. Not funny then, still not funny now, really!)
I suppose that as a 50 something woman, graying and now groggy with fatigue, I should not be surprised. Insomnia is apparently a woman's lot at this time of life. However it is a relatively new experience for me, especially on this scale and so I am flummoxed. What to do? Warm milk, alcohol, pills of all kinds are sometimes suggested. My problem is exhaustion brings nausea but I am too tired to care; I just feel awful! I am not looking for sympathy, just the understanding from others that I am functioning at way below my usual game. With less than half the sleep I used to get, I am lucky if I even know what game we're playing, much less the score. When a dear friend called me the other day and woke me from a snooze in the middle of the afternoon, I knew I had reached a new low. I now know that I am tired and old and now napping.... The end can't be far off! At least I'll get some sleep?
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