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

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     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?

Virus 2

     We are blessed in that COVID-19 has not yet seemed to have impacted us that much. My husband is still working. Our eldest was only laid off for a couple of weeks. Our youngest was already doing online schooling. My parents are now able to do their own shopping. And home church is happening and the neighbourhood dogs have yet to start howling at the sound of me singing hymns at home. So on a weekend when the dishwasher kicks the bucket, my husband's truck and trailer are stolen, our eldest breaks a front tooth and our youngest is so mad at me that she goes to her godparent's house without even saying goodbye, I am thinking.
     My thought is that it is not the virus itself that is affecting many of us as much as all the secondary losses, the things that keep us sane. Like being able to shake a new neighbour's hand. Or hugging your newly returned and therefore quarantined mother when she starts to cry. Seeing friends. Actually going to church and getting a Fuzzy Peach candy from the nice lady at the door. Seeing people's faces. Having birthday parties. Walking into Michael's Bakery and getting to sneak in a delicious latte and a berry danish. Using cash. Not being frightened that any interaction out there is going to bring "IT" into our home and affect our medically vulnerable daughters.
     Again, please don't get me wrong. I am not taking this lightly. People are dying. It's just on a weekend when some things go wrong, I am grateful for what is going right. And I sure would like to shake hands with people or hug a few folks out there....

Emily

     About four and a half years ago, a young woman reached out to our daughter on Facebook as they shared a relatively rare learning disorder, Nonverbal Learning Disorder (or NLD). She understood our daughter's social isolation and declared that she would be our daughter's friend, one way or another. Several years older and living on the east coast, she knew how hard it was for our daughter to make her way in the world. She sent out her friend Darby the NLD Duck to have some adventures on the west coast. It was such a sweet and understanding thing to do. It seemed as though she was telling us, " Well if I can't visit you, I'll send someone who can!"
     Darby was with us over the Christmas holidays and had many fun adventures with us. From Vancouver to White Rock he saw the sights and we took photos of him and our daughter everywhere. He seemed to enjoy our Canadian customs and was a charming, low-maintenance house guest. Fortunately he arrived back home to New Jersey in one piece.
     Our daughter and I just found out that Emily died a few days ago. We are so sad and can only imagine how bereft her family is now. She was a bright spark in the world; a loving, caring ray of sunshine in an often gray and cloudy world. We cannot help but grieve her loss; we had not met her but felt as though she had cared for us nonetheless. That's the kind of person she was. Our thoughts and prayers are with everyone who knew her....the world truly is a lesser place without Emily.

Virus

     As a sixty-two year old woman with seasonal allergies who still experiences hot flashes I have been worried. Chief among them is the concern that I have COVID-19. I am sure that I am not the only person to feel this way. Add that to being cloistered with my very favourite people in the whole world twenty-four-seven and the concern that we have enough toilet paper and hand sanitizer (for venturing out) as well as grieving for the way of life that we used to have and I have reason to feel stressed. We all do. Please understand that I am not taking this lightly; people are dying. I have little to worry about compared to most people. But with all of the above in mind I would like to share the COVID-19 assessment tool provided by our provincial government. From it I was able to establish that I do not have COVID-19 and therefore will not put my family at risk. Here it is:

This self-assessment tool, developed with the BC Ministry of Health, will help determine whether you may need further assessment or testing for COVID-19. You can complete this assessment for yourself, or on behalf of someone else.

If you have respiratory symptoms and a serious ongoing condition, or are in the third trimester of pregnancy, please follow the advice of your specialist.

Most people do not need to be tested for COVID-19 because it will not change your care.

People who do not need to be tested for COVID-19 include:

• People without symptoms
• People who have mild respiratory symptoms that can be managed at home
• Returning travellers

Who should be tested for COVID-19?

People with respiratory symptoms who may require testing for COVID-19 include people who are:

• Hospitalized, or likely to be hospitalized
• Health Care Workers
• Residents of long-term care facilities
• Part of an investigation of a cluster or outbreak

Anyone who has symptoms - including a fever, cough, sneezing, or sore throat - should self-isolate for 10 days. Continue to complete this assessment to determine if you may need care.

Last updated: 3/28/2020 10:50 am PDT

     There is so much information out there that we may become victim to invalid data. Please note the date on the bottom of the above and refer to the health officials in your area for the most up-to-date details. In the meantime stay home! And I pray that you stay well. 

Letter 2

     I am thinking about you, about all of you right now. Of course my immediate family is on my mind constantly but I am also wondering about you. Are you well? Do you need anything? Is there something I could do to help you right now? I have been very self-involved since the fall when we sold our property. Packing, purging and moving has occupied a large portion of my time. And I hate to tell you this but it is spring now and we are still not unpacked. There is so much of everything that we need to pass on, sell or donate in order to fit comfortably in this house. And with my husband's desire to renovate certain parts of this house immediately, we are still in chaos.
     But enough about me--- are you okay? Do you have folks in your life that can help you out? How are your children doing with all the myriad of changes that are occurring, usually on a daily basis? My girls are handling it in their own way. I think a kid with special needs can require more support with change and the resulting grief than typical kids, but maybe not. Trips are cancelled, plans are changed, jobs are lost, opportunities missed, losses experienced and there is the worry. Are we well, can we weather this storm, will we lose loved ones? So many questions....
     Anyway, I thought of you today and wondered how you are. I may not get a chance to tell you but you matter to so many people. You matter to me! And so I thought of you today....
     Take care,

Special

     A recent Special Olympics basketball tournament gave me yet another opportunity to look around at all the amazing ways that human beings play and work at play. There is a wide range of abilities in this sport played by folks with a "dis-ability". Short and tall, wide and thin, young and old, everyone was different from everyone else but all shared a very special interest, a profound love of this game called basketball. Of course some teams did better than others; there are always winners and losers and although the scores did matter and the baskets all counted, it truly was about being a team. Everyone worked so hard! I saw some very fast, very intense playing with close contact and even closer scores. I also saw players making sure that their slower teammates had a chance, even briefly, to handle the ball. There were some great moments of play, there were some generous acts of kindness but mostly there was love of the game.
     As always the Special O coaches were all very encouraging. There was a great deal of organization needed to pull off a multi level tournament; keeping everyone safe, hydrated and together. In a venue like a school there is not always a lot of room for large groups but the coaches used every corner to their team's advantage, some even warming up just inside the school's front door. I was also impressed with the referees and linesmen all of whom volunteered their time. These folks were exceptional in the way that they kept the players playing fair and instructed them on the rules behind their calls. They also showed that they too love this game of basketball.
     It was a good day; it started early and ended late but it was a day of great spirit and warm camaraderie. And my daughter and I felt privileged to be there.

Packing

     Our move is moving along and it is very hard but we are not doing it alone. Thank goodness for the family and friends who have helped us so remarkably! Apparently flying across the country to carry furniture for someone else is not too big of a deal for some folks!? We have wrecked some pretty strong backs this week, our own included. And some incredible people have added bringing packing supplies and supplying delicious food for hungry helpers to the list of stuff we can be grateful for. And we are.
     This is an immense change of lifestyle, circumstance and setting for us. To go from a five acre patch of messy beautiful heaven to a lovely little suburban lot is a big change. We also go from driving everyone everywhere to some independence for our daughters and more manageable maintenance for us all. There are losses and gains from every change and we know that both will be in great supply. It is challenging to go from an area that you have been comfortable in for about twenty five years and try something new; even if it's only a short drive away, it's new for us.
     We leave behind neighbours and friends, good times and sad days. Our home was a place of much enjoyment and so much growth. As our family enters a new chapter in our story, I feel many things but mostly I feel gratitude. We all do! Thank you to all of you--- our postal code will have changed but our phone numbers won't!