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.