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.

Christmas

     It seems to me that it's more acceptable to be a Christian, a believer in God, a church-goer at this time of year. Most of the time I feel like we are the minority in the world, as I am sure that we are--- church attendance is continually declining. At Christmas time though, it seems like almost everyone can sing about Baby Jesus and the joy of His birth, whether they believe or not. Maybe I am just being cynical and there is a lot more of us out there than I realize. Or perhaps at Christmas, the possibility of faith is closer to us all because the story is one of simple poignancy: a child, a star, a peace that could overcome all of our differences and make us one. Maybe at this time of year some of us yearn to be part of something bigger than ourselves, even if we fail to understand it the rest of the year.
      Is there more giving in December, more hope, more reconciliation? Do folks reach out a little more then, act more charitably, try a little harder to love their neighbour? I think so. It's a shame that we can't be those people every day of the year. But if Christmas, Chanukah, Winter Solstice, December make us love one another a little more, give to each other a bit more, if it makes us look around us and realize how blessed we are, then great. Really truly great.
    I haven't always but I love Christmas now. My favourite Christmas memory is of waking up years ago, to the sound of our two young daughters singing "Go Tell it on the Mountain" from their bunk beds, quite unsolicited, quite unexpectedly, very joyously. And that is why for me Christmas is about children, our children, the children we were, the children in the world who need us, all of us and the child: the child, the star, the peace.
Happy Christmas to you and to yours....

Bravery

     After yet another seizure, this one at school in front of peers, it was decided by the teachers that the class would need to be debriefed. They had been evacuated from the room to give our daughter some privacy while the seizure occurred. This happened right at the end of the last class on Friday afternoon and so over the weekend some students probably wondered about her, what had happened and why.
     Our daughter's first reaction was to not want to be a part of this explanation to the class. She was embarrassed to have had a tonic clonic seizure which lasted seven minutes in front of anybody, much less any of her classmates. At fourteen years old, who can blame her; at fourteen we don't want to be perceived as different, and certainly not this different. We talked about it over the weekend, listened and talked some more. And I think I heard her and I think she heard me because I left it up to her and she chose the harder road.

     On Sunday she indicated that she would be wearing purple to school on Monday; purple for Purple Day, the Epilepsy Awareness and Education Day, which was started by another 14 year old Canadian girl named Cassidy Megan when she was nine years old. And on Monday afternoon our daughter stood up in front of her class with her teacher who explained what had happened. I wasn't there and did not hear what was said but just knowing that makes me incredibly proud of her. It is no easy thing to tell your secret to relative strangers or even to stand there while someone else tells it for you. Her teacher called her a brave young woman. Yes she is.
     We have no idea what will happen in the days to come but know that we will count them. We will count them as the days since her last seizure but we will also count them as the days since she stood up, answered questions and looked her classmates in the eye. We could not be more proud or more grateful to know such an amazing person.

Lady

     A friend of ours left this world the other day and the earth is a lesser place. She was 95 years old, the mother of my brother-in-law and a very special lady. I know that our girls were happy to consider her their honorary grandma. She lived in her own home by the beach, a cozy little place, with photographs of loved ones and lots of the colour blue around her. She always remembered to bring some of her home-grown tomatoes for my mother-in-law, for whom they were a special treat. Happy to be involved in all the family gatherings, she was a gracious guest, someone who always had a kind word, a smile and a compliment regarding the meal.
     Recently she had begun giving away some of her jewellery. I was thrilled to receive a delicate little heart locket that had belonged to her and had a picture of one of her aunts in it. She knew how much I love hearts. Our younger daughter received a Scottish brooch to complement her Highland dance clothing and our older daughter received another gorgeous brooch worthy of any lapel.
    She had had a rough time with her health but waited until her son and daughter-in-law were back from vacation, to enter hospital. The end was hard for her with difficulty breathing and no strength to move herself in the bed. Predeceased by her husband and her daughter, she spoke of being ready to go and be with them again. It was hard to see a woman of such strength and dignity reduced to such a tiny being in a hospital bed. She was uncomplaining and stoic--- intelligent and well-mannered. Kind and wise with a ready smile and a sincere interest in others, she will be missed. God bless and keep you Peg....we'll always remember you!

Hope

  

  The other day our 14 year old daughter and I went to see her paediatric neurologist to discuss the results of her MRI. Her doctor is a spunky lady with a beautiful Irish accent, a good sense of humour and a no-nonsense approach. I like her. Anyway, she took our daughter in first so that they could talk together "sans Mama" and then my daughter came and got me. On the way down the hallway my daughter told me that she had seen her brain on the MRI---"her beautiful, wonderful brain". The good news waiting for us on the other side of the door was that her MRI showed that her brain had no scars, no lesions, no tumours. It was absolutely normal! In the doctor's opinion it also meant that there was a chance that our daughter could grow out of her seizures. For the first time in many years, I felt more than hopeful about my daughter's life with seizures. She will always be "differently-abled" or learning disabled, if you prefer that term. But the fact that there is a chance, even a tiny shred of a possibility that this might not be a lifetime diagnosis feels remarkable to me.
    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.