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Archive for the ‘Family’ Category

Fatherly love

Nearly three years ago, the two men who were instrumental in making me the woman I am today walked me thirty feet toward my future.  And then let me go.

These men have been my constants in a world of variables; they helped me take my first steps, taught me to read, held me when I cried, taught me to drive a stick shift, learned patience when I reached the incredibly volatile teenage years, provided advice (often unsolicited) on matters from college to credit cards, brought out the figurative shotguns when I got my first (and as it turned out only) boyfriend, fought for me when my illness wreaked havoc, and – when it was time – gave me the reins to sort it all out myself.

To these two men – forever and always – Happy Father’s Day.

With my dad and step-dad

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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

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Just about two weeks ago, we got a break from all the crazy weather here in Massachusetts – severe thunderstorms and even tornadoes – when a sunny piece of Texas came to town.

It’s difficult to describe how much I love my dear cousin, but she always manages to bring smiles and sun to wherever she is. She lit up my wedding when she agreed to be one of my two bridesmaids nearly 3 years ago.

She makes family gatherings more than just tolerable (just kidding… I love ALL my family) but incredibly enjoyable:

She also sends me those little reminders to smile.

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