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!

Best

     Another difficult aspect of life with extraordinary needs children is the judgement of well-meaning yet ignorant folks who think they know all about our life. Yes, my priorities are skewed...my #1 focus is our chronically ill and challenged child. Everything else will come second or third or maybe even fourth on my list. That's it. You don't know about our lives or what it takes for our child to get through every day. Please don't think that your negative commentary is helpful. What our family needs is people who raise us up, who lighten our load, not folks who think they know what is best. What is best is what we are aiming for: prayerfully, intentionally, making our way a day at a time, the best way we can, with the help of each other and the people who truly are our family and our friends. God willing, we take it a step at a time; with love, with patience, with kindness we will make it.

Love

     I have a friend whose husband was recently killed while walking their dog at night. She is someone I used to work with.  My friend is now facing life without her husband. Their son who is grown is now without a dad. They must pursue a life changed forever.  I learned about the accident through social media and have witnessed the tremendous outpouring of support for their family. They are loved.

     The workplace setting that we met in was hospice; our work was helping children, youth and adults with loss. It makes sense to me that my friend and I met while working for hospice. She is a lovely, nurturing woman, gentle in all her dealings with others but not afraid to ask the hard questions. With a nursing background and her own personal skill set she seemed especially in tune with grieving children. For me hospice was an amazing job, one that I could never imagine leaving except for the even more amazing job of motherhood. Part of the reason that it was such marvelous work was the perspective gained by such close contact with death. You learned day after day, person after person, loss after loss to stay caught up with your "I love yous". Every day you saw that in the blink of an eye, life as you knew it could be over and that if you were lucky or blessed or healthy enough, there might be another chapter for you, maybe. It was not always easy but it was intense, real and terribly satisfying.
     My friend wrote about the amazing support she and her son have received since the accident and the tremendous honour that was bestowed on her late husband by the huge congregation of firefighters at his memorial service. She also wrote an incredibly wise piece of advice:

"Hold your loved ones. Say what you need to say. In a strange yet perfect way  we had all of the 'right' conversations over the past few years. No regrets. Always more to say, yet the most important things were said." 
     My friend, her son and the rest of their family and their firefighter family must pursue a life forever changed. It will not be easy I'm sure but they will do it. No regrets. 

Brodie

     Our 16 year old dog Brodie was hit by a car last night and died. We are all sad and will miss him.  He was very old so we knew our time with him was limited. He was a nice dog although he took his property-guarding and his country-doorbell responsibilities a little too seriously at times. Man, that dog could bark! He even let us know when there was a car heading up our neighbour's driveway.
     There was a little fierce streak in Brodie that was not always under control. He knew if anyone had had a bad experience with a dog; he picked up on their fear instantly and chose these unlucky folks to nip or show his teeth to. We have neighbours that we have not seen in years because Brodie kept them at a distance. It was a problem that we were not always sure how to deal with.
     The other issue he had was staying at home. The folks we got him from had put an ad in the paper: Free to a good home. They had planned to go into cattle ranching and unfortunately for them the deal fell through. They lived in a ocean view property in White Rock and Dee-oh-gee as they had named him (Yes, it spells dog)  was not going to be happy there, they feared. At the time we were leasing 70 acres which seemed like the perfect place for Brodie as we renamed him, to run around. Later when we moved to 5 acres we could not keep him home. So he was tied up for years unfortunately until we invested in an electric collar which mostly kept him home, unless the battery went dead and we didn't notice.
    Several years ago Brodie had a grapefruit-size tumour on his shoulder and the vet said that he may or may not be able to take it out, depending on how it was growing inside. We opted not to do the surgery when we found out  from a friend about an amazing natural remedy called Essiac. I made up the tincture and poured it on his food. Within a month the tumour had shrunk down to nothing--- it was incredible! Developed by a nurse in Quebec, Essiac contains Burdock Root, Slippery Elm Inner Bark, Sheep Sorrel and Indian Rhubarb Root and was developed for use by humans but it saved Brodie's life, for a few years anyway.
     Pet deaths are hard on families but they are sometimes a child's first experience with death and so are also a teachable moment. The way we as parents mourn our losses can shape the way our children learn to cope with loss and death. Rituals which honour the loss and allow an expression of sad feelings work as well for pet loss as they do for human death. We will be having a memorial for Brodie on Sunday, rain or shine. 

Friday

     Have you ever had one of those days? Picked up Daughter #1 from high school after a seizure, picked up Daughter #2 shortly after for a playground accident, and then discovered that my credit card company had been sending my bills to my old address, which meant I wasn't getting them, therefore racking up considerable interest and putting my credit rating in danger. What a day!
     There are days however when my life seems so monotonous, so dreary, my chores like drudgery, that I can barely stand it. The endless laundry, food preparation, housework, filing, typing, scanning and photocopying, you name it, all seems so boring. And then you have a day like Friday. No dullness there---- just fear, anxiety, stress all piled on top of one another. I'll take boring please!
     One of the benefits of self-employment is that I can drop everything immediately to look after our girls. It has been a reality based on our eldest daughter's epilepsy that I have had to be able to swoop in, at a moment's notice, to pick her up and put her to bed for the duration of these postictal states which are characterized by headache, fatigue and sometimes nausea. And of course I hover around her for the balance of the day to ensure her health and well-being. My husband has to pick up the slack, work-wise.
     Even parents whose children do not have a chronic health problem know that when your child is ill, everything else becomes unimportant by comparison. There is no bigger deal than getting them well. When your child does have chronic health issues and/or extraordinary needs it is the thread that runs through your every day. One tug and it seems like everything else will unravel as well. If you see us running, we're just trying to keep it all together....