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.

Bailey

     Our rescued rabbit Bailey (aka Bentley) died last night. He was discovered in his hutch with his mate Oreo snuggled up beside him, much to our sadness. He came to us via a newspaper article written about an arrest which consequently left a dog and a rabbit abandoned at a house in White Rock. They both had car names: Bentley, the rabbit and Mustang, the dog. Mustang was quickly adopted. Bailey's photograph was so cute that we could not resist adopting him. It seemed we were the only ones that wanted him anyway. A neighbour Ruth had been feeding him through the chicken wire that provided him shelter under the stairs. He proved to be quite a challenge to catch but eventually I nabbed him and he came home to Creekside. He lived with us for several years and so it was sad to lose him.
      Childhood is fraught with pet deaths it seems. I know mine was marked by consecutive dog deaths; sometimes they got run over by a car, sometimes they died of old age. It was really how I learnt about death. On a small farm like ours there are many funerals; we have buried dogs, cats, rabbits, ducks, even baby chickens and song birds. Bailey's eulogy was very moving and read as follows: "Bailey was a good rabbit. He was happy, fuzzy, sweet, cute, hungry, loving, soft, brown, frisky and he loved apples, carrots and Oreo." It seems it was important to have ten good things to say about Bailey, very much like the little boy in The Tenth Good Thing About Barney, a wonderful children's book about loss by Judith Viorst.
     Oreo, Bailey's mate might surprise us with a few baby bunnies which would be a sweet thing. Life really is always changing with loss being the sad melody that plays through it, getting louder on days like today. It's up to us to sing along at times and recognize that tomorrow is and always has been, another day.
    

Epilepsy: A Definition of Courage

Safety

     Another seizure, this time outside the school on the unforgiving concrete sidewalk leading our daughter to her bus. No one we know saw it but I can only imagine that she crumpled down to the ground as people rushed to her aid. Blankets were found, emergency meds given, students backed away and gave her space. Miraculously she appears to be uninjured; a sore head, arm, jaw and neck but no blood, no cuts or scrapes. Unfortunately there was loss of bladder control which is something we have dreaded and vomiting. These details seem horrendous in hindsight but like the seizure cannot be helped and therefore are just details.
     So a long wait in the Emergency Room at the local hospital is tempered by the kindness and competence of everyone we meet there from the ambulance drivers who wheel my daughter in because I cannot find parking to the doctor and nurses who treat us both with respect and and even a little humour. We leave with a prescription; perhaps this infection contributed to this particular seizure.
     And now we deal with the aftermath. How do we keep our daughter safe at her high school while allowing her independence in her life? She cannot be accompanied everywhere it seems and yet these seizures strike with no warning, no aura. We will increase her antiepileptic medication in search of that elusive seizure-free state. There is no guarantee that at whatever level of meds, freedom from seizures will ever be achieved. How do we keep our daughter safe anywhere while encouraging independence in her life?
I don't know, do you?

Nevermind

     As I approach my 57th birthday this year I am aware of feeling really okay with it all. It's not a landmark birthday of course (that's three years away) but I am noticing that a kind of peace is filtering into my life. Sure there are still things that make me upset: the quality of my children's education, the squandering of our tax dollars by various governments, the myriad of injustices that pervade our planet; I could go on and on. ( Don't get me started on the "building materials" that are piling up on our property!)  I just don't feel at the mercy of my desires anymore. Chicken or fish, green gloves or blue, white wine or red, latte or mocha....I really don't mind one way or another. And that is not to say that I don't care; I care about many things: my family, my friends, other people, animals, the world, current issues. I'd like to paint more, read more, write more poetry. My thought though is that I am just getting older and as my husband says "Not smalling the sweat stuff."
     Maybe it's "old lady apathy" or maybe not. I think what is happening is that I am recognizing that there are so many things in our world that are not important. I would like to focus on those things that are: my children, the world that they are inheriting, the memories that they will carry with them into adulthood and independence. I can't change the many things that aren't right in our world. But I can smile at my children, listen to what they have to say and remind them by what I say and do that they are loved, truly loved.