Recycle

     We have all gotten used to recycling at this point. Some dinosaurs like my husband still put stuff in the wrong bin but we always seem to catch it and make it right. Our older daughter deals with the garbage and recycling as part of her chores at home and she does a great job. In the past she's accumulated bottles and cans through friends and family and she and I have sorted them, brought them in and she has received the cash.             

     Since we moved we connected with some of our neighbours through the neighbourhood's Facebook page and discovered that there were folks who were happy to let our daughter bring their bottles and cans to the recycling depot. They understand how hard it is for a disabled person to make money and though our daughter is usually employed she will never make the amount of money that most of us take for granted. Typically disabled people make minimum wage and if they are fortunate enough to have a job, they often work only part-time. During a COVID layoff this little job has been a life-saver, not only for the cash that it brought in but more importantly for the connections our elder daughter made in the neighbourhood and the sense of purpose it gave her. 

     The recycling depot now offers a service whereby they sort and count the bottles and cans and credit the individual with the appropriate amount. I for one, really appreciate this as I am allergic to stinging insects and the wasps that used to hang around us at the depot as we sorted made it a very stressful activity. Anyway, suffice it to say that we are big fans of the Return-it Express program and would recommend it to anyone. Our daughter has made a few more friends in the neighbourhood, a little pocket money and the feeling that she is doing a good thing. You can't put a price on that! 

Breakthrough

    

     For three and a half years our older daughter was seizure free. During that time she got used to a certain level of independence that seems usual for most young adults. She got to go places with friends, went on dates and was even able to be home on her own. Since the breakthrough seizures that occurred in July and again in December we are back to our old ways: hypervigilance, unlocked doors and so many other precautions.           

     Breakthrough seizures are those that break through the anti-epileptic medications. Sometimes they occur because meds are skipped or because of provoking factors such as emotional stress, sleep deprivation, alcohol or other recreational drugs and TV or video games according to the NCBI.  In our case, last year's seizures happened on the eve of our daughter's twenty-first birthday and on Boxing Day morning. Over the years our daughter's seizures have often occurred at times of excitement or when daily routines are changed, for example at times of celebration or when travelling. 

     There are different schools of thought on whether medications should be adjusted after a breakthrough seizure but of course as parents, we look to the medical expertise of others to know what to do. We dislike the fact of pharmaceuticals being a daily part of our daughter's life but in the case of epilepsy, they are a life saver. Our daughter spent most of her high school years trying different medications at different doses to find that level where both types of her seizures would be controlled and the side effects were bearable. One medication that she took for a while made her terribly depressed. And while depression is common in teens with Nonverbal Learning Disorder and epilepsy, this medication was a mistake for our daughter. Fortunately her pediatric neurologist was responsive to emails and we quickly got her off that one and on to something else.

     We had hoped that anti-epileptic drugs or AEDs might be a temporary measure for our daughter. More and more they are looking like a permanent aspect of her life. They keep her mostly seizure free and mostly herself. We all can live with that!

     

Birds

     One of the results of COVID-19 for many of us is being home a lot more than is usual. This can be a blessing or a curse depending on who you are and what you enjoy. Currently popular advice tells us that now is a good time to look around, breathe deeply and try to connect with our surroundings, especially outside if possible. One of the simple acts that I have found enjoyable is feeding the birds. Besides my favourite chickadees there are sparrows, juncos, finches, towhees, and even the occasional jay--- although they are usually looking for peanuts and not black oil sunflower seeds. The movement around my various feeders is always changing and very satisfying, at least to me. One extra special sighting is the Anna's Hummingbird which stays here throughout the winter. I make their sugary mixture a little less dilute in the cold months to ensure that it won't freeze and the hummingbirds will get enough of what they need. The sight of a male hummingbird with his magnificent though tiny red face against the backdrop of a white-washed wintery day fills me with hope: hope that spring is coming, that life goes on, that even small lives can be impacted by our care and concern. I am not the only one who has felt that hope and birds were interconnected as this poem written in 1891 by Emily Dickinson demonstrates:

"Hope" is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

And sweetest - in the Gale - is heard - 

And sore must be the storm -

That could abash the little Bird 

That kept so many warm -

I've heard it in the chillest land -

And on the strangest Sea-

Yet - never- in Extremity,

It asked a crumb - of me.

Emily Dickinson

Anna's Hummingbird---    Photo Credit: Dr. Manfred Kusch

Virus 3

     I just had the test for COVID-19.  And exactly as the nurse had described it, the swab was shoved so far up my nose that my eyes watered. It was similar in discomfort to jumping into deep water unprepared, with water strongly forcing itself up the nose, a sensation that I have experienced in the past and one which made me an avid poolside reader but never really much of a swimmer.
     The ease with which I was able to drive to our local hospital, park, give the necessary information from the safety of my car and then be brought inside to have the test was amazing to me. I was thoroughly impressed even as I was feeling lousy and anxious. I was processed by a team of cheerful, friendly and competent nurses who really seemed to enjoy their work despite the fact that they are working at the very front of the front lines. As busy as they were, I was in and out in fifteen minutes and just have to self isolate for the next couple of day until the results are known. Given that I am coughing, sneezing and far from good company, this should not be hard. The sheet of paper that I was offered after the test gave a lot of good information regarding next steps. Chief among them is staying home, washing hands and wearing a mask, also monitoring health, staying separate from others and cleaning surfaces frequently.
     The only thing that could possibly make it a better experience would be to get the result that I am confident of in a shorter period of time. Same day results would be great and far less of an inconvenience. But convenience is not what we are looking for now. A negative result would be more than enough.

Neighbours

     In the poem "Mending Wall" North American poet Robert Frost repeats the old proverb, " Good fences make good neighbours". In the twenty five years that my husband and I have lived together we have encountered all kinds of neighbours and many types of fences. They have been as different as the places that we have lived; from broken down places in the country to clean suburban neighbourhoods, the people next door and the fences surrounding them have been diverse.
     This year as we moved, the biggest boost to our family especially during this pandemic has been the kind welcome of our new neighbours. We have received sweet treats, friendly conversations and words of welcome and encouragement at every turn. In this global new normal where we are to keep our distance in any way and with everyone possible, the kindness of strangers has been a blessing. And to hear our little buddies next door greet us through our shared fence reminds us that good fences do make good neighbours but shared fences really make the best neighbours.

Day One

                                .

     Our daughter was seizure free for three years, five months and eighteen days. Last night on the eve of her twenty-first birthday that changed. After over three years we all had gotten used to the freedom, the absence of fear and worry; we had gotten complacent. I believed that we were through the epilepsy chapter in our lives. I was wrong. Today as we celebrated her birthday we were also mourning this new reality. The celebration of her birth was much more important, much more meaningful but we hadn't slept and so the grief was visible in the tiny cracks and crevices of our happy, happy smiles. 

     We have everything--- God has blessed us richly in so many ways but chiefly with the love and support of family and friends. Our beautiful daughter's sunny disposition and cheerful ways make her easy to love. She has many supporters, maybe people like you. And so we do what we have done many, many times before. We stand up, we join hands and we start to count again. We count the days without seizures. Today is Day One

Advocate

     Since our eldest daughter entered the school system I, among others, have been her advocate. Whether at school, church, work, sports, with friends and peers, various levels of government, with non-profit organizations, and even with a cruise line, we have worked to educate folks about epilepsy and Nonverbal Learning Disorder. In order to get the level of support she requires we have needed to make people realize how challenging life is for her. Her family and I have tried to give her every opportunity to learn, grow and develop and do what it takes to live safely and securely in the world.  We have found it strenuous at times and easier at other times. The point is, it had to be done.
     It's no secret that the typical siblings of additional needs children often feel as though they do not get an equal amount of support. How could they not? Having a special needs child can often absorb parents' attention especially when there is a dual diagnosis or multiple aspects of need. The balancing act required to keep all those balls in the air is daunting at best, exhausting at its worst.
    But since our youngest daughter joined our family, I have also been her advocate, although not to the same extent. As parents, advocating, supporting and protecting our children is part of the job description. The difference is as our typical kids grow up they become their own advocates and we relinquish that role. Part of the work of being a teenager is the transition from child to self-advocate and adult.
     Our special needs children also need to learn to advocate for themselves; hopefully that is one of the things we model and teach them. It is a life-long lesson that extends into their adulthood. Due to their abilities and challenges, the role of advocate is always part of who we are as their parents and why we are worried about their lives, after we are gone. Who will advocate for them then? Who indeed?