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?