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.
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 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 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.