Feeds:
Posts
Comments

Archive for the ‘Coming together’ Category

On a Jet Plane

Posted in California, Coming together, In Motion, mito, On the road, Raising Awareness, reality, Symposium, umdf on 16 June 2011| 2 Comments »

Wednesday morning we set off for our first big adventure in nearly a year. The destination? Chicago for the 2011 UMDF Symposium. The goal is to learn more about mitochondrial disease (you know, that pesky neurometabolic disorder that we can’t seem to shake) and the current treatments and research as well as meet up with members of the mito community from across the country. We’re pretty stoked to say the least.

But it certainly wasn’t easy to get here. First, we had to apply to a bunch of grants to pay for the trip. You see, Keith’s still a grad student and my work hours are few and variable; we just don’t have the kind of money necessary for this kind of trip – or any kind of trip for that matter. Luckily, we were able to get a good chunk of it covered.

After that, we had to coordinate all the medical mess. Because I have numerous medical interventions intended to keep me healthy and happy, nothing is ever exactly “easy.” For one, I’m on 24/7 intravenous infusions to provide nutrition, keep my autonomic nervous system content, and my blood glucose stable. The infusion bags are heavy, bulky, and many. And they have to be refrigerated or the contents will become denatured and useless. Bummer.

(more…)

Read Full Post »

A Very Special Birthday

Posted in Birthdays, Blessings, Boston, Coming together, Family, Friends, Hospital life, Kiddos, Life, Love and loss, mito, reality, Smiles on 15 June 2011| 4 Comments »

One year ago, a very special little girl came into our lives. Eithene (pronounced Eth – eh – nee) Rose was a 4-year-old beautiful ball of spunk who, like me, lived with a combination of Mitochondrial Disease (an neurometabolic disorder) and Ehlers-Danlos Syndrome (a connective tissue defect). She was also born with numerous birth defects which are together known as VACTERL Association.

Over the last year, Keith and I have visited with Eithene and her family (mom Jessica, dad Sean, brother Gabriel, and Aunt Jill) whenever we were in Boston. We have grown to love them. We couldn’t leave a single store without Keith seeing something that reminded him of Eithene or one of the other mito kids we regularly visit. Eithene’s story, however, is somewhat unique. Over the time that we’ve known the family, Eithene has only left the hospital for about five days last July. Other than that, she’s mostly been in a room on the ICP (Intermediate Care Program, a step-down of the ICU) at Children’s Hospital Boston. We’ve visited through numerous infections and medical crises and seen the strength she exhibits on a daily basis. Her mother’s love and faith have been unwavering and inspiring. Not only that, but mom Jessica has helped me through a large number of my own medical crises.

Saying "hi" to True

(more…)

Read Full Post »

Here comes the sun

Posted in Blessings, Change, Coming together, Dogs, Family, Friends, Home sweet home, Keith, Kiddos, Life, Love and loss, mito, Party Time, Realizations, Sharing is caring, Smiles, Stealing words, The way I see it on 25 April 2011| 2 Comments »

Note: I wrote this blog nearly a month ago and am just now getting around to posting it because a good friend has been asking for it for ages and I thought she could use a small pick-me-up. This one’s for you, Liz…

~~~~~~~~~~~~~~~~~~~~~~

Little darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

This winter has been one full of challenges, stresses, adaptation, loss, learning, sickness, and love. Yes, love. Without it, I’m not sure I would’ve come out as relatively unscathed on this end.

This winter, New England received more snow than it had in years. It was blizzard after blizzard. It was cold and unrelenting. Even worse, my body appeared to be taking lessons.

One thing that I’ve always prided myself on is being able to rise from just about anything and everything stronger and smiling. After December, I was petering on the edge, still smiling, but straining and struggling not to lose myself. But after the second month of medical hell, I wasn’t sure that I wasn’t going to rise.

(more…)

Read Full Post »

« Newer Posts - Older Posts »