Sisters

     As a parent there is nothing more wonderful than seeing your children interact with each other in a gentle, loving manner. It can almost be surprising to witness this type of exchange, particularly when they were mercilessly, endlessly squabbling just minutes ago. It can hopefully give you a glimpse into their future relationship and makes the whole world seem like a more peaceful, caring place. I came across our daughters chatting with one another while one was taking a bath. Earlier one daughter had given the other a "makeover" and they had so much fun with it that you could not imagine a harsh word between them again. Just wait five minutes!
     When one of your children has extraordinary needs, your typical child must grow up faster. In our case our younger child has had to learn to care for and look after her older sister. She has timed seizures, brought medication and replenished water. The tables are turned, birth order becomes irrelevant and that does not always seem fair or right. A workshop a friend had recently attended featured a panel of siblings of special needs kids. One of the comments from a panel-member that stood out for her was the desire to have had a typical sibling as well as their special needs sibling: someone to share their experience with, to bounce ideas around, to talk about their lives. Those things are harder to do with a developmentally challenged brother or sister who may not want to or be able to engage in such philosophical or existential discussions.
     When I witness the love and affection that exists between our daughters I am gladdened and not so worried. As an older parent I am more than concerned about our additional needs child. I can save money for her future but who will look out for her, support her, give her help when I am gone? These are questions that I suppose must be left in God's capable hands. What cheers me is looking around my own kitchen table and realizing that He will have some help.

Better

   

     Our daughter seems to be having these very small, very short complex partial seizures which are over in a minute or less. Unfortunately these call into question a couple of falls that she had this summer; we now suspect that they were more of these tiny seizures. The good thing about them is that they are not the massively dangerous, drop-to-the-ground five minute tonic clinic seizures that have dominated our daughter's life with epilepsy. The bad thing is that they are seizures and they are still happening. And of course, if she is standing at the time they occur, she falls, which can be very serious. She has been fortunate not to have broken any bones or teeth so far. Even so our daughter is disheartened by having to start counting the days again. As a sixteen year old she has dreams of buying and driving her own car; she has had a bank account for that express purpose ever since we can remember. So starting over at being one day seizure-free is quite depressing but she is not down for long. Our daughter is wonderfully cheerful despite her challenges.
     The good news is that Special Olympics has brought with it, along with the fun and exercise of a weekly sports game, the chance for new and lasting friendships. Our daughter is always encouraged, despite everything, by the positive aspects of her life. Fortunately for her and all of us in her circle, she views her life as a gift; it is a wealth of possibility with every day full of the ability to be better.

Together

     When a child has a chronic health issue and/or learning disability or special needs of any type, it is common for him to feel and to be perceived as different. He can often feel excluded from some of the typical activities of childhood: play dates, sleep-overs, birthday parties and later, hang-outs, trips to the mall, proms, dances and other parties. This can be heart-rending. In the past we often invited girls over but they always seemed to end up playing with our typical daughter who is four years younger. High school is problematic; our daughter finds girls hard to approach or maintain a relationship with; sometimes boys are easier but that comes with its own set of challenges. Sometimes the child self-excludes; our daughter never got enough sleep at the sleep-overs she was invited to so she decided not to attend them. A boy we know goes to the library every day, sits in front of a computer, headphones on and blocks everything and everyone else out for the remainder of his lunch period.
     There are islands of acceptance out there. As I have already written, Special Olympics and Challenger Baseball are marvelous for the friendship, team-building, competence and inclusion that they provide. Our daughter loves them! Places like Semiahmoo House in our community offer a wide range of programs for developmentally challenged kids, teens and young adults. Church youth groups and the local children's choir are accepting; the adults in charge model inclusion and acceptance but that sometimes does not carry over into real, more-than-one-day-a-week actual friendship.
     Let's face it, extraordinary needs kids are different. How they are typical is the way in which they hunger for friendship, connection, a bond of understanding which says: "I like you and want to spend time with you, enjoying the things we like to do. Together. " If only it was as simple as it sounds.

Team

     For three years our daughter has been in high school, in a program for kids like her, in the care of some pretty amazing teachers and aids. A recent assessment concluded what we already knew: our daughter is in the right place there. It's not always easy to find a place where a extraordinary needs child can get along, much less flourish. I know that well enough by reading the posts in the various parent groups I am part of on Facebook. All over the world folks are struggling to find accessible education for their children that is meaningful and inclusive. Fortunately for us, that is not an issue.
     The caring and competent women who make up our daughter's team work hard to ensure that she is safe, organized and learning every day. We cannot imagine how our daughter would get through her school day without them. Whether they are assisting her in class or ensuring that she is safe during a seizure, they do an incredible job. My husband and I could not be happier with the education our daughter is getting at our local high school. The only thing that would make it better is if that shiny new high school they keep promising us would get built. But even in the old overcrowded one, our team is the best and we know it.

Stress

   

     I always worry when I make statements like this because they invariably become null and void the minute they are out of my mouth but here goes. Our daughter has only had one seizure so far this summer vacation. One! And it was so small that I might not have seen it except I was sitting at the kitchen table with her when it occurred. It was a tiny, short complex partial seizure; she froze in mid-sentence and it was over within a minute. No convulsions, no falling to the floor, just freezing and then not. Post-ictal recovery was brief and immediate. It almost might not have happened except it did and I saw it.
     The cause of the seizure was probably pre-camp jitters; that day our daughter was off to Zajac Ranch for Kids for the second time and that was probably the trigger. Being away from familiar surroundings can make anyone a little nervous. Our daughter loves the week at epilepsy camp--- a chance to hang out with other girls with similar health issues, be a little more independent and enjoy the fun activities the counsellors and the ranch provide there. We as a family appreciate immeasurably the opportunity that she has to participate in this wonderful week of camp and we cannot thank Zajac Ranch for Kids or The Center for Epilepsy and Seizure Education in B.C. enough.
     It may turn out that stress and particularly school stress is a large part of why our daughter was having so many seizures in the past year. And if that is the case we may have to make some changes in the way she approaches her school year. Anti-anxiety practices may have to be observed. Or it may be that the two medications that she is taking are finally at a dose that will successfully control her seizures. And our daughter has had so many people praying for her! Whatever the cause of the lull in seizure activity, we are grateful. And I just hope that I haven't spoken too soon.....

Quilt

     When is a gift more than just a gift? I would say that when it is big, purple, beautiful, handmade and cozy and when it makes a big girl feel like a princess again. That is more than a gift; that is love made tangible, made real---- it is an always available hug, ready when needed night or day.
     I think that gift giving is one of the blessings of this life. Sometimes we buy presents hurriedly, without much thought and throw them in a gift bag on our way out the door. And that's alright of course; we've all done it. I do take pleasure though in finding the perfect thing and giving it to the perfect person especially if I know that they will like it as much as I do. And if I can do that within the parameters of my budget, so much the better.
     Sometimes though we receive a gift so thoughtful, so huge that we are blown away. And such is the case today, with our daughter receiving a gorgeous, full-size, majestically purple quilt made especially for her for her 16th birthday. It was made by a favourite auntie who always finds a way to make these amazing creations and bestow them upon unsuspecting family members at the perfect time. The fact that she can find time to sew like this when she teaches full-time, keeps a spotless and happy home and feeds us all at all the special occasions is incredible to me. That she is a wonderfully loving daughter, sister, mother and aunt is not hard to believe. That is who she is.
    So today our daughter has a treasure that she will cherish always. And when a gift like that is received the best thing that we can do is wrap ourselves up in all that love and enjoy; just savour that great big hug, smile and say thank you.

   
     

Things

     While having a mammogram yesterday I saw this quote in the bathroom, "The best things in life aren't things." It seems to me that when I most need a little nudge in the right direction towards gratitude, courage or even humility, I get it. Mammograms are stressful for me given my mother's history with breast cancer so the seven little words on the washroom wall were a calming reminder of what really matters in life.
     My mother was diagnosed with breast cancer at almost the same time I learned that I was pregnant with our eldest child. It was at that same time that my father decided that they should downsize and moved them from a half acre property to an ocean view home with a handkerchief-size back yard. At that time my sense was that my dad wanted to simplify their lives as much as possible by removing all the extra maintenance a large yard requires as well as giving my mother a beautiful landscape to enjoy while healing from the trauma of breast cancer surgery and treatment. At that time he definitely knew that "things" were not important.
     Our daughter continues to have seizures. The medications do not seem to be working and so we have been asked to consider other options, surgery being one of them. My anger and  frustration at the unfairness of this life for our daughter continues to play a loop through my head. Our daughter assures me that God has a plan for her. A huge maroon truck with "God is Love" painted in big letters on the cab door is the reminder that I am delivered while at the corner of Highway 15 and life.
     Apparently Art Buchwald, American journalist and humourist is responsible for the gem on the bathroom wall. Never more that right now, I know how right he was in every way. We are one week seizure free. Today is another day.