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

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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.

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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.

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 — https://sheepinabasket.wordpress.com/2013/06/08/fleeting-the-beautiful-sign-of-a-wonderful-day/

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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