One year anniversary: Let’s celebrate with little Thor!


It was worth getting up every few hours during the night for two weeks and then dropping him off at the Atlantic Wildlife Institute, his new home, where he’s now being cared for and will be released in the wild when the time is right. Little Thor – amazing and strong little creature!

It was a big year that started off pretty rough, but now seems to be taking a turn for the best. We went from Gen being totally ignored to now having all these appointements scheduled because people are getting a little a lot worried. Let’s hope this will be a year where some progress will have been made for all EDSers – especially those that seem to have no way out or no one to turn to like my dear friend A.

When things turn

It’s been so long since I last posted and I miss my fellow bloggers so much! Here’s a quick update on some of the things going on around us.

The snake

It was painful. My daughter is still mourning for the loss of the little boys to whom she had grown very attached. The mom – there are no words to describe how I feel for her and there is nothing I can say that could ever make her feel better. She is however a true inspiration. I am waiting for the right moment to tell her to write a book because honestly, I don’t know how she does it. She writes beautiful thank you notes and nice posts on her Facebook page. She celebrated her oldest son’s birthday at the grave site where she left a present he was so anxiously waiting for and lit spark sticks as he couldn’t wait for those either. Last week I finally went to the grave site and my heart was so heavy. It had rained and everything needed to be refreshed – just an awful reminder of such a terrible loss.

Finding a job

I’m back at a full time job outside the house and it’s great! Shortly after being offered the position we received a call from Halifax for Gen’s appointment with genetics. Finally a chance for an official EDS diagnosis. While in Halifax I bought a crimson patent leather Coach purse! I even got nice high heels – black suede and they look like velvet. I had a birthday gift from Gen and her friend and got things from Sephora’s. I spent money on me. The last time I actually did something like that must have been 20 years ago. Gen said I needed to find myself again and as I looked down at her, sitting in the borrowed wheelchair, how could I resist the big blue eyes filled with hope looking up at me? The last time I worked I left every morning worried, wearing the usual cardigan and a pair of pants. But this time, things are different as Gen’s on Midrodine and what a difference that makes! So every morning I make it a point to wear something pretty – most of it is old clothes but it still looks OK. Before I step out the door I apply my favorite crimson lipstick and I know that things are better.

The diagnosis

The geneticist is a young woman, very tiny, and smart. She listens and asks a load of questions. Gen is doing really well – I don’t think I’ve ever seen her so determined. She describes her pain in an unusual way, adopting various positions on the exam table and talking about pressure points. I’m floored. I realize I know so little about my daughter. The geneticist listens and then she tells us Gen fits very well within EDS hypermobility type criteria. But there is one thing – she feels that something else is terribly wrong. If Gen has EDS type III, then she’s the most extreme case she’s ever seen. We’re waiting for MRI results for confirmation. We’re OK with that. Gen’s condition is acknowledged – that’s all she wanted. “It doesn’t matter that I missed out on school and my teenage years, all I want now is a little quality of life and to live a little” she says. What a wonderful and positive young woman she is – a true inspiration.

Leigha’s school

Leigha dropped out of nursing three months before the end of her program. She had finished all of her classes with honors but just couldn’t keep up with the training at the hospital. After working all summer in a nursing home (ironic isn’t it?) she decided to return to college for additional sciences courses in the fall and has applied to university for January. Her program of choice: a major in biology and a minor in archeology. Not sure what it is with biology and this family, but she seems to be following my footsteps. I wish nothing but the best for her. She was just diagnosed with PCOS and is now very pale. She’s now a replica of Gen when she was first sick. If this is EDS, we know a little more than we did so hopefully she’ll be treated fairly and on time before the worst kicks in.

My take on the snake

Connor's and Noah's patio art 2013

Connor’s and Noah’s patio art 2013

There are no words to express the pain that comes along with such awful news. They were innocent little boys and certainly didn’t deserve to have their lives cut short in such a tragic way.

The mom, Mandy, is my daughter Leigha’s best friend. An amazing single mom who gave all that she could to these little boys. The snake owner, JC, is a nice man who kept these reptiles as a zoo and then part of the building was used as a pet shop.

My one and only thought  when I first saw the huge snake was that it shouldn’t live where it did. That was about a year or more ago. The enclosure, deemed as safe by the owners I assume, was a special room and the animal was kept under key. It’s not just that living with such a big reptile may be creepy, it’s that the animal itself should be sitting in the wild doing what it normally does – not sitting there breathing and waiting to be fed without sunlight or company of its own species. I mean they do reproduce and some of them even protect their eggs – they have a certain level of intelligence. But this is what we do, us humans. The worst part of it is that we know when things are not quite right but we still just leave it at that.

In the basement, there were also crocodiles. They were huge. They had their own enclosure and were well kept. Still, it was a limited enclosure and although they hadn’t seen different (they must have been babies when it all started), how is it OK to have kept them that way? I’m not pointing the finger, but the list could be very long if we stopped for one second and really thought about the things we do and see on a daily basis. This so called expert on TV was showing his snakes in these little boxed cages, saying there is really no safe enclosures for such creatures. Did I hear that right?

Instinct is strong. How often do we say “I knew it, I never should have…”.  But it’s become a natural thing to ignore instinct. When Leigha was born I tried breastfeeding and it was awful. They told me to put her on each side for 10 minutes and then to feed her for as long as I could. What was that really suppose to mean? Shouldn’t I have listened to my baby or my instinct? It was a nightmare, one that was replaced by my smarts when my second child was born and I decided to do it my way. The boys’ mother told my daughter she so didn’t want them to go that evening – in the end, she gave in. She let them. Leigha told me JC always gets up in the night to check on the kids – was that by instinct? My dad checked on me every night before he went to bed. He did right up until I left for University at age 18. Once, when I was four I had my tonsils out and nearly drowned in my blood. He found me in his routine check. My dad always felt he should check on us – and he did. He saved two of his four children that way. Bleeders he would call us.

The press is something else and makes it all so much more difficult. I don’t know what’s wrong with the Canadian press, their reports are full of crap. It reminds me of these publications that depend on sensationalism. Hence, I rarely watch the news. I always feel I should wait until everything is out in the open, otherwise I really don’t know ANYTHING. This time it’s different, it hurts because I know the mother and knew the children and as a result I watch the news. But I have my own opinions and that’s even more difficult.

The python may not have fed as it should have as it was enclosed for so long – I think it was ten years (not sure here).  That was my first question to Leigha. Did it eat well? How was it fed? How did it react? Did it react? There may be a lot to be said about these creatures in the wild but have we studied them in such conditions? Then I find out the kids had been playing on a farm with the animals. Obvious now I’m thinking as it must have been attracted to the smell. Food. An opportunistic animal – why not? Now it is said it fell through the ceiling. How’s that? Did it coil up and applied all of its weight in one spot? I don’t think so. Was the ceiling rotten??? How do we know that it would have “gripped” it’s victim with it’s teeth before coiling around it? One can essentially manipulate a little child that age in any way without waking it – especially after a busy day after which it’s “dead” tired. What if the child were completed relaxed and didn’t move  would the animal have had to insert its teeth in its victim to coil around it? What about the people saying that the python would have swallowed them already? Really? My common sense tells me that the feeding process is not instantaneous – it’s not like like the snake has little arms to push its prey into its throat. There seems to be little if any common sense with the press. They are interviewing all these experts and yet asking all the wrong questions.

Then there’s the public and the way people react. My mother is getting older and she’s living in an apartment building for seniors. The information she comes up with is painful for me. I tell her not to listen and assume – it’s always better to ask ourselves questions rather than taking it all in I tell her.

It’s so easy to blame the man who was sleeping in the next room while the life was sucked out of these two little boys.

I blame the community and the authorities who lay dormant before human ignorance. 

Blakey is lost

Blakey when he was adopted in August of 2012

Last night in this crazy summer heat, I recommended my daughter Gen take her Indian Ringneck on the back balcony so to take advantage of the cooler air setting in. From our back patio we can see the ocean and a lush thick forest bordering the side of the mountain where this little town is set. The back yard and the surrounding neighborhood looks like a little valley on a distance of a few kilometers in width.

It took two minutes, I asked Blakey for a kiss and Gen took him closer to me. He pulled over, kissed me on the lips. Then as she held him he was startled. I don’t know if I did something wrong. He spread his wings and flew over the balcony – I thought for sure he was going to fly down way below and my stomach started to twist. But then like a small airplane, he flew upward and circled above along with the other birds. We tried calling him – frantically. We were hoping he would simply fly around and settle back, but no he ended up on a distant birch tree. Two hours later he started answering to Gen’s calls. As my eldest daughter and I stood at the bottom of the tree, he flew off and that was it. We haven’t heard of him since.

It was a long and difficult night for Gen and I.We barely slept and by 4 AM we could hear the little baby birds calling out for food from their nests. We got up early hoping Blakey would start his usual little morning conversation since he was out in the open. So far, no news but Gen is sitting in the back calling him gently and offering him food. He’s always starving in the mornings.

There is something to be said for the strength of a sick child. She is so much stronger than anyone else. She is so much more than I will ever be and I say this in a good way because she amazes me and touches the bottom of my heart with her beauty. I often wondered how she could put up with her illness. It’s been nearly eight years and she’s hanging in there regardless of the fact that she has little or no life whatsoever . Now I know that the strength of these children is way greater than what we’ll ever be able to imagine. Getting the bird for her was my way of giving her a life that was worth taking care of. She’s done an amazing job with Blakey. He’s very tame although he wasn’t hand fed as a baby. He speaks many words and sentences. They range from “hello, thank you, good boy, peek a boo, wake up, do you want a cookie, come on, come here” to a whole other bunch he mimics from hearing me rant all day long. She cried a lot last night but quickly pulled herself back together, reasoning everything including me.  Is it the illness keeping her so strong? How does she deal with such awful pain all the time?

I can hear her still calling and offering the many gentle words she uses with him. I’m hoping he’s around somewhere so he can hear her, that he will cry out and that we will be blessed by his return.

Anxiety in children: what’s wrong with that kid?

ImageDisclosure: I am not a medical professional – what is contained in this post is my own opinion as a parent.

Yesterday I attended a family reunion and while we were sitting at the table I had a discussion with someone who’s teen has been suffering from anxiety symptoms for years – I’m guessing since childhood.
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Indian ringneck bird [aka] plain-ole-parrot as we call it in India :) [a sketch]

This amazing artist and blogger made this for Gen. It’s an indian ringneck and he drew it from his mouse. Read on!

so i wrote

I drew this one for a little girl half the world away who is suffering from Connective tissue disorder. I came across a piece of art this kid had drawn —

As most of my art makes no sense apart from giving me some joy, i thought it would be useful to share some art (and joy). Hope this talented kid recovers soon!

get_well_soonThat’s a parrot standing on one leg, with the other one raised, on a finger.

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Amazing companionship!

Companions my daughter Gen can’t live without.

1) Blakey the Indian Ringneck. He’s now one year old and talks up a storm. His voice is gentle and a pleasure to hear. We think he’s a male and soon he should be having a ring around his neck! I got him for her so to give her a reason to fight her connective tissue disorder.


2) Gen’s dog Hailey. She’s a cross between a Rottweiler and a GSD. She turns 7 in November!!! She says the word “Rottweiler”. She came along when I was trying to figure out what was happening with Gen. I so wanted to make her feel better. Finally, Hailey saved us all!

Hailey the Canadian dog

3) Gen’s gaming tool – Xbox controller SCUF which she says is gentle on her fingers and hands. She ordered it from the States and it’s well worth the price plus the colors and a ton of other options are all custom! The SCUF controller is the proof that Gen is controlling her illness rather than it being the other way around.

The Tool

The Artist’s Eye

Five or six years ago, while living in Montreal I went to an art exhibition that blew me away. The artist was Mark Lang. I love appropriation as a form of art and Lang has to be one of the greatest in the field. Check out his appropriation of Jan Van Eyck’s Les époux Arnolfini. Notice the adaptations of Lang. It is quite the analogy and really, have things changed that much over time? Not really, it seems. Perhaps that’s why so many of us find comfort in the warmth of older houses and decors.

Let others show you art!


Marriage, by Mark Lang. Oil on canvas 60″ x 49″, 2009


The Arnolfini Portrait, by Jan van Eyck, 1434