Tuesday, September 2, 2014

"I am not a hero, I am not a martyr"

is what a friend of mine said as an answer to the numerous people who constantly ask "how do you do it?"
You know what?
You just do, and I couldn't agree more with her. We were not given a choice.
I am teary-eyed as I write this after watching excerpts of the Telethon celebrating life and heroes who live and struggle, heroes who are robbed of their own bodies.
Families with two children suffering Spinal Muscular Atrophy, 24-year olds with ALS, and other neuro muscular diseases.
Perhaps the ice-bucket challenge going viral on the internet will help raise awareness? maybe it will slowly disappear from social media and we will be left living as before, struggling and fighting, but also relishing in the small victories trying to accentuate the positive.
Just a point I thought I would bring up.

I cannot believe my last post dates back to June 24th, and school is already back in session.

I just interrupted this post writing as I realized I had about 5 medical bills to pay. They keep coming in and piling up on my desk.
Sigh... this is the part of special needs I don't like, or chronic illness, how ever you want to call it.
Paying bills, calling insurance providers, making sure payments were received, it is a full time job. Insurance claim forms are quite easy to fill in now that I know my insurance ID by heart...

So back to the fun part of this entry.
The summer in France was beautiful.
We enjoyed Sauve and its medieval atmosphere, the small cobble stoned alleys drenched in sun, the glorious walks along the river feeding ducks, the merry go-rounds, the tasty foods and the ice-cold rosé.
Brittany was, as usual, the fun of being with family and friends, celebrating mom's 70th birthday and sitting around the fire at night roasting marshmallows.

There were a few difficult moments, when cousins weren't inclusive, but I don't really want to dwell on that.
It is too painful.
It is our daily load, but Zoé is resilient and finds ways to compensate.
She played well with her two cousins in Sauve, and with Sam in Brittany.

We had to face a lot of stares, when people saw our "big girl" in a stroller. I wish I had a sign saying, "don't stare, I have a disability, or please ask, if you have questions..."
I should market these signs, they would go a long way.
Yes, indeed, Zoé needs a stroller and might need an adaptive chair in the future, because she cannot hold up stamina very long.

We managed to do a night tour of Sauve, where actors performed a medieval play, using clues and props. Zoé and her cousins LOVED it, it really was the highlight of the summer.
I strolled Zoé through the narrow and dark alleys, following the princess of Sauve and the knights trying to find the crowned jewel to free the prince.
When he came out in full armor on his white horse, Zoé couldn't believe her eyes. We got back home around midnight and mom and her friend Anne, came looking for us as they were worried about our weherabouts.

All in all, the summer was wonderful and now our big girl is in 1st grade. I cannot believe how fast time flies.

On the medical front, I am going to be part of an investigative study.
It will be a year-long study: the 1st one being the baseline visit, then the 3 month visit and the 12 month visit. The study entails a full day of testing from 8:00am to 5:00pm:
-blood draw for hematology and chemistry research
-DNA analysis
-bio-marker testing
-physical examination
-cognitive, health and quality of life tests
-bone density scan
-PT: 2 hours of muscle testing
-breathing test
-EMG: recording of electrical impulses measuring electrical signals and myotonia. (using fine needles)
and the final test
-Muscle biopsy, performing a 1/4 inch incision and collecting small bits of tissue.
They will also be calling me once a day for a month, to ask questions on daily life.
Stanford and Doctor Day's team will be conducting the study.
They need 20 people and so far we are 5. I do hope they can find more candidates...They need data to find a cure!

Voila dear readers, I will try to be more consistent in my posting.
Much love from Piedmont to y'all.


The knights and the damsel in distress

Les cousines


Giant 4 in a row

Les cousines dans le hamac

petting farm

No comments: