Purple Day Again

     Another photograph and article about our eldest daughter and her upcoming speeches about epilepsy and Purple Day appeared in the local paper. It is surprising to me how many folks read the local news. Anyway, it has given her a little extra attention these days which tends to balance out the anxiety caused by speaking in public. Also she has been having seizures despite the antiepileptic medication she started in September which is very stressful for us all. We have been upping the dose after every seizure to find an acceptable level: no seizures and no side effects. When one of the side effects could be a potentially fatal rash, we want to make sure that we are only administering what is needed to be seizure free and raise the dosage very slowly.
     As I commented in the article, it is very brave of our daughter to speak to her peers about her seizures, just as it is courageous of her to be interviewed in the paper--- everyone is going to know. With that fact comes the possibility that she will be harassed or teased for revealing her epilepsy. This was in fact, her grandparents' biggest fear. I pointed out to them though that we choose to live openly and deal with the consequences as they come. As it was Pink Shirt Day, the anti-bullying day, it only seemed right.
     One of the reasons that Cassidy Megan started Purple Day was that she wanted other kids with epilepsy to know that they weren't alone. How can those kids feel part of something bigger if we are all hiding our challenges? Who will be the first to say: "I live with this. I don't like it but I deal with it."?  Well in our case, it will be our daughter. I could not be prouder of her and I know her dad feels the same way. As she stated in her simple yet eloquent way," If people don't like me because I have seizures, then I don't need them in my life!" Right on, girl--- you tell them!

Lagniappe

     Last week our younger daughter fractured her wrist playing basketball at school. She did it on Tuesday and on Wednesday I took her to our doctor, who suggested we go to the hospital for an x-ray. This we did and about five hours later we walked out with a new blue cast, fingers to elbow. Luckily it was a tiny break on the hand she doesn't write with and I did not take too long in getting her there. I did question her rather strongly to ensure that the trip to the doctor and hospital was necessary. No one wants to do the excruciatingly long wait in the various hospital waiting rooms where all the magazines have been removed because they were thought to be spreading the flu and the smell of a draining abscess can drive you to desperation. Of course you are not allowed to use your cell phone and have to keep running out to the road to put another twoonie in the parking meter. You run because your child will not stay in the waiting room alone (justifiably so) but you cannot miss your turn so you gallop outside and you gallop back. I am not complaining. I just don't want to be in a hospital unless I absolutely have to be.
     I do check in with our youngest regularly to make sure that she feels like she gets enough attention. Fortunately, she says she does. Having an older sibling with epilepsy and a rather rare learning disorder means that the lion's share of our attention is spent on her older sister--- there's no denying that. It's not fair, it's not right but it is the way it is. If you've read any of my other blogs you know that our youngest daughter is an angel, a terror, a beautiful human being and a pain in the neck, at times. She is our second miracle, our little extra gift from God, our lagniappe. I wasn't supposed to be able to have the first daughter; the second one was an unexpected bonus.
     Everyone likes a lagniappe, a little something extra: a baker's dozen (13 instead of 12), a free key chain, BOGO shrimp rings (buy one, get one free), an extra rose, a free shampoo sample. This week our youngest has her own little something extra: one blue and almost-completely-signed-on cast. Not free exactly, but memorable nonetheless.

Learning

     Sometimes conflict is our harshest but best teacher. As parents we are always giving advice, trying to smooth the way, attempting to make things easier for our children. Unfortunately, the clearest lesson usually is learning the hard way.
     When one of our daughters was having an issue with a classmate, we gave her advice and tried to give her the benefit of our wisdom, such as it is. We also encouraged her to handle it the way she thought best, even if that was not how we would handle it. So she did what she thought was right and afterwards wished she had done it differently. When asked to reflect on the experience, she was clear--- she wished she had slept on it and revisited the issue the following day.
    When our other daughter was having difficulty with someone on her bus, she was reminded to use the experience to gain some self-awareness. By giving this person another chance, she realized that this individual has some of the same learning difficulties she possesses--- it was a chance to look in the mirror and learn. Though they are neurologically based, her behaviours are sometimes seen to be annoying and inconsiderate. Now our daughter has a chance to see how people may view some of her actions, and do her best to try something else. She must learn to get along with the rest of the world, most of whom are not learning disabled. It is terribly difficult for her but this opportunity to be on the receiving end of some of her own behaviours was very eye-opening.
     Live and learn. Life is about learning. Sometimes we are conscious of the fact that we are gleaning new information; sometimes we are just pedalling madly, trying to stay afloat until the next wave of chaos strikes, without a chance to have that "a-ha" moment. Either way, we are doing the dance---just getting more out of it some days than others.

Daughter Again

     When our almost-ten year old was asked by the school librarian what her three wishes were she said, "That my sister wouldn't have any more seizures, that every day would be Anti-bullying Day and that I could have a German Shepherd puppy."
     That she is an absolute angel and a terrible perpetrator of squabbles goes without saying...she is human after all. That two out of three of her wishes would be directly linked to the welfare of her older sister speaks volumes about her character. She is a rare and wonderful creature; a person of style and substance; an amazing being who excels at doing and being...and can still drive me crazy with whining/complaining/squabbling of the highest (and lowest) order.
     I am of course, totally biased; she is our daughter--- an unexpected beauty who arrived 9 months or so after a particularly delicious 45th birthday dinner at a local Indian restaurant. The pregnancy was difficult; we were told that there would be a genetic anomaly resulting in grave health issues and physical abnormality. None of it came to pass. She is insurpassable. Hearts will be broken. I have permission to live in her basement when I am older, except when I have failed her in some way and then I do not.
     I refer you to my blog of 26/4/2012---Daughter. She is all that and more.

12.14.2012

     We are at home here today having a lovely, easy weekend: making squares, wrapping teacher gifts, signing cards and finding lollipops for classmates, enjoying the snow and feeling the love of family, the relaxation of not having to go anywhere.
     Meanwhile parents, friends, classmates and staff are dealing with the horror and loss of yesterday; trying to make sense of senseless acts of violence perpetrated in what should be the safest place in the world--- an elementary school.
     We are hugging our girls and realizing once again, how small our problems are. A thread of sadness will weave its way through all our comings and goings this year, thinking of the folks whose loved ones are no more....

SUDEP

     I just left my older daughter at a church youth group for the first time. Her cousin wasn't there yet, they were having a movie night and most of the group leaders were busily preparing for the evening's activities. It seemed as though there were 100 kids there. I pressed my epilepsy information, contact numbers, my daughter's health number and a brief explanation of my daughter's learning disorder into the youth pastor's hand; he jammed it into his suit jacket pocket and assured me that he had First Aid training. We hung around until the grade 8 girl group leaders showed up. They were busy and another lovely young woman introduced herself to us and chatted with us until we left, leaving my daughter, in her capable hands. I felt terrible leaving her, stressed and nervous in a situation where only one person knew anything about her. And as we drove away, I berated myself for leaving her, for not staying longer, for taking her there in the first place. And then we saw an ambulance head in the direction of the church....I could barely stand it.
     Later, after she had arrived home, safe and smiling, I thought how silly my fears had been. There she was; she had had a good time, and had cake as well. And that is what usually happens isn't it? You worry, you imagine the worst and it does not happen. And God willing, it never will.
     I have been reading about SUDEP, Sudden Unexplained Death in Epilepsy, which apparently accounts for the death of 1 in every 100 of people with severe seizure disorders. Even now, typing those words on the keyboard fills me with dread, as if the very fact of writing them, gives life to this collection of letters and picks a fight with them, to be fought later.
     I know that I am a glass-half-empty kind of person--- there is no denying that. I also know that keeping positive thoughts, positive energy around you helps you and everyone around you. But I also know that knowledge is power and that power means knowing everything I can to help my child live the safest, healthiest, happiest life possible. And so I read, I investigate and I learn. The next time that she heads out the door, I remember what I know and I smile and I pray and I let go.

I Love You

     Two of our friends had a family member die this week. Although the deaths were expected, it seems that there is always the shock of the end. There is no good time to die, at least for the people left behind. These two individuals had cancer and so there was probably some degree of pain and suffering. For some people it is a relief that their loved one no longer suffers. My friend said though that he was disappointed not to be able to have one last chance to talk. His sibling had been given so much morphine that it was impossible to connect.  My other friend hadn't been able to get back in time to see his relative before he died.
     I know that when someone dies I am reminded of how important it is to keep up to date with my "I love yous". That was the gift of working at hospice; I was reminded daily. Now my work is primarily as a mother, wife, farmer and secretary---so death is not as prevalent. In the 90's television show "Early Edition" (that we have discovered on Netflix) the main character Gary, receives tomorrow's newspaper today and so he works to undo the tragedies he reads about in the paper and thus change the news. Isn't that what saying "I love you" as often and as meaningfully as possible to the important people in your life all about? It can change people's lives: for the better when it's said, and meant and not so when it's never spoken, never felt.
     The holiday season is pressing down on us and so it's supposed be a hard time to be sad. Of course, many people are down-hearted at this time of year, for so many different reasons. I think when you have small children you cannot help but feel the infectious joy that this time of year brings to some kids. If you have faith and the story of Christmas resonates for you then you too are touched by the wonder of this special time. Many people though are tired or sick or broke or missing someone and so this time of year is especially hard.
     If  you are able to reach out, by whatever means possible, I say do it. It will make a difference. Whether it's connecting with an estranged family member or donating a few extra cans of tuna to the Food Bank; a box of chocolates for your mail carrier or a note to a far-away friend; some warm socks tucked in the coat drive for the homeless or even a smile for a stranger on the street, big or small it all makes a difference. And don't forget those "I love yous"--- even when you pass by the mirror. We could all use a little more love, couldn't we?