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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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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The journey: the early signs

Detail of L'écolière - Oil on Canvas Her last year in school

Detail of L’écolière – Oil on Canvas
Her last year in school

 

There is no way I will let her see the light by having surgery. That’s because I have to make sure she is fine, that everything is under control. This time around, it will not be days before they let me hold my child. I will do all that I can. I refuse to focus on the possible outcome of second trimester bleeding, pre eclampsia, and pre term labor. I am going to get through it all. Continue reading

Where’s your disabled person?

A few months ago I decided to ask for a disabled parking permit for Genny. Every time she needs to get out of the car I go nuts from worry and start counting the steps she will need to take to get to destination. Then of course I worry about the inside of the building, how far she will need to walk and whether she will have to stand. Standing is no longer an option for her and walking is excruciating.  Continue reading

Back to square one

A Gentleman And His Sheep In the Rain by Todd Sullivan

A Gentleman And His Sheep In the Rain by Todd Sullivan

Yesterday was the long awaited appointment for the possibility of a diagnosis related to my daughter’s joint hyper mobility and the other symptoms that “seem” to come along with it. It took us 8 hours to drive there because of bad weather. Continue reading