Hospital

     Our daughter and I are spending five days in the Neurosciences ward at BCCH. It is a busy place with full parking lots, crowded elevators and bustling families going here and there. The EEG video monitoring that our daughter has to undergo is in the hope that we might find out why she is having so many seizures. Her antiepileptic medication is reduced in order to prompt seizure activity. The location of the seizures' origin will also be very useful information.
     It is a surreal experience to more or less drop out of your everyday life and step into a hospital room where your child is consigned to a bed for five days. It is also bizarre to want your child to have seizures but that's what I am doing: praying for a seizure or three. So strange! That everyone here is kind and helpful could go without saying but I will say it--- everyone is incredible. And if ever you are feeling sorry for yourself, come grab a coffee and look around. You will know immediately how lucky you are, how blessed you are to have such small worries. Hundreds of children here are dealing with life and death issues every minute of every day. All I have to do is watch one child have a least one seizure. No worries.

Why

 

 

     Whenever our daughter hears stories of young people abusing drugs or alcohol, she has a hard time wondering why they would do such a thing. Our daughter would give anything to trade places with an NT (neuro-typical) girl. She recently came to realize that she often feels envious of her little sister for being "normal" as well as smart, thin and beautiful. That any typical kid would take chances with their life, health and safety just to drink or drug themselves into oblivion is beyond our daughter's understanding. Why?
     Of course everyone's life is relative. Neuro-typical kids have problems too. The only thing is they don't have the massive, life-altering reality of a neurological disorder which shapes every aspect of their being from motor and spatial issues to social difficulties, not to mention seizures which can and do occur at any time. And I bet they have a friend or two to share time with. Perhaps a day in someone else's shoes would halt their self-destructive tendencies....and maybe not. As our daughter would say, "That's sad."

Village

     Whoever said that it takes a village to raise a child was not wrong. In the life of a chronically ill and/or challenged child, it certainly does. One of the people who make a difference in our daughter's life is the kind lady that drives the "special-needs" bus. She is one of the people that makes our daughter's life easier by driving her door to door every single day of the school year. Our daughter has had a difficult year with more and more seizures, medication ups and downs, illness and mood difficulties but this nice person is a friendly constant in a world of change.
     Our daughter reports much about her day; it is an aspect of her learning disability that she debriefs with me every afternoon most of what she experiences. This is part of the reason that it is so important that I am here when she comes home from school every day. She needs to do this recount of the day's events and I welcome the opportunity to listen. Most days I hear something nice about this wonderful lady who drives our daughter's bus. We laughingly call it her yellow limousine because she is often the only student on it. There is not a day that goes by that we do not realize how fortunate our daughter is to chat, to laugh, to ride and to spend time with this lovely person. As our daughter would say " 'bye Robyn, love ya!"

Difference

     Every morning at 7 a.m., 6 little pills, every evening at 7 p.m., the same thing, 6 little pills. That's what it takes for our daughter to get through every day seizure-free and even then that is not guaranteed. We are one week seizure-free and giving thanks. The seizures get shorter and milder and one day they will disappear either because the medication is "right" or our daughter has out-grown them. That is still a possibility we pray for every day.
     After another great Purple Day, I am so grateful that we are living now instead of 100 years ago. Now there are options: medication, diets, surgery, seizure dogs, various therapies. Now there is acceptance and inquisitive school children asking thoughtful questions at assemblies designed to inform and educate them. There are local newspapers articles giving sensitive coverage of our daughter's presentation. There is nation-wide and even world-wide awareness of this very common brain disorder. According to Epilepsy Canada, every day 42 people in Canada learn that they have epilepsy. Maybe you are one of those people or know one of those people. As our daughter said in her Purple Day presentation, " I want people to know that if you have epilepsy, you are not alone. Together we can make a difference." Yes you can.

Break

     Unlike many students, our girls get two weeks of Spring Break; two weeks of time away from school  and most after-school activities to spend as they like. Many families travel...we usually spend the time at home and travel at less busy times of the year. Our girls have spent the time in the usual ways: crafts, television, computer, reading, shopping, exercise and the ever popular squabbling. To be honest, not much of the latter and certainly not enough exercise but a fairly balanced couple of weeks, all in all. With our soon-to-be-twelve year old's birthday around the corner and our nearly-sixteen year old's looming in the not-too-distant future, I am again and always reminded of the fleeting quality of time. I had heard older people in the past say that the passing of time accelerates as you age but I realize now that these people were probably only about fifty years old when they made this observation and I am now well past that golden marker. Anyway those folks were right! I am tired of saying "Where does the time go?" but really, where does it go....

     Due to my own particular set of challenges, I try to be a day-at-a-time kind of person. Regardless of your personal agenda though, time flies unless you are in an awful predicament like a long-distance relationship or prison and then it tends to crawl by. Either way, it is out of our hands and all we can do is spend it either smiling or squabbling and know that the first Monday after Spring Break will show up, one way or another.

Jonny

     Over the years I have enjoyed a ton of music but none as much as the music of Jonny Lang. I first heard the hit "Lie to Me" in 1997 and have been a huge fan ever since. I remember being stunned that such a huge voice could come out of such a skinny young guy. Jonny's spiritual journey has parallelled mine in many ways and this kinship of sorts solidified my appreciation of him and his craft. Last night's concert at the Hard Rock Casino was amazing and made me realize that I need to get out more. I couldn't remember the last time I had been out with my little sister and we had a great time. Jonny and his band, an exceptionally gifted group of musicians, quietly took the stage and kept us happy for almost two and a half hours. They played new songs, old favourites, the hits and did some incredible solos. I forgot my woes (such as they are) and immersed myself in the pleasure of watching and hearing great musicians doing what they do best. My only complaint is that I would like to see Jonny play in a place that I could take my girls to (casinos don't allow minors.) They would love to see him; after all they grew up listening to him. God bless you Jonny Lang---you made this old girl really happy for a few hours! I can't wait 'til you and your band are back in town!

Blessing

     After our daughter's last seizure and subsequent concussion I sat down and wrote a letter to our families to let them know what had been going on with her. We had been so out of touch! It had been a hectic time with a bunch of seizures, medication changes, colds & illness, doctor's appointments, missed commitments, sleepless nights....you name it. Everyone needed an update and our daughter needed everyone's prayers and positive thoughts. The subsequent out-pouring of familial love was maybe what you would expect from a couple of great, relatively large families. What I did not expect was how I would feel after witnessing this flurry of emails and phone calls; how loved she is --- genuinely, completely and unconditionally. Whether it was a list of emails from our daughter's godmother, the string of photos from St. Lucia sent by my vacationing brother, the lunch dates at school arranged by a caring cousin or the prayer chains immediately notified in the South-West United States as well as in the North-East, it was love. And it was kind, helpful, load-lightening and breath-easing. Our daughter is walking with a lighter step and a bigger smile. It's not over of course; there are still headaches and we still deal with the threat of seizures every day but our daughter feels even more loved than she did before and that is a blessing. Thank you!