26463

26463 

never underestimate the power of extending your heart

to lift the burdens of others.

boston marathon 2010

today team genzyme is running to raise awareness of rare diseases.

  so while i am sitting here,

right this very moment,

tucked into a familiar reclining chair at my local infusion center

phillip maderia is running the boston marathon.

yes.

right now, in this very moment

and for a significant handful of feet pounding hours.

  while he runs...and i sit

tethered to a life saving enzyme replacement therapy

we are tying our hearts in solidarity.

phillip maderia runs to change lives. 

today he is running in honor of mine.

he has been running since 10 this morning.

with his impossibly perfect cells

and the photograph of my sombrero wearing self across his heart.

does it surprise you that i am sporting his tag number 26463?

while he is running, and i am infusing....

miracles are being exchanged.

Comments

[Delphyne]

Very wonderful...

[Delphyne]

Yes, miracles are being shared all the time if we open ourselves to them.

Not sure why the youbute wouldn't work - here's the direct link. Get ready to smile:

http://www.youtube.com/watch?v=pkPNa4DBFHI

[Allegra]

Yes, we both know about miracles, don't we?
Sending you Love and Light and all good things and also sending you home to rest, Ms 26463. The miracle I want the most is coming, and when it comes we will tend to the butterflies and the hummingbirds and the sky will be painted the color of happiness and the wind will carry the echoes of laughter only and you and I will hold each other in the safety of our friendship, finally at home to enjoy each other's company.

[Spadoman]

I am speechles, but praying hard and sending as much positive energy as I can your way.

Peace.

[Suz Reaney]

Rebecca,
Thank you so much for writing to me! I was so angry and trying to contain myself. We have had thirteen people live with us while our daughter was growing up, many from other countries. We are all one! That I know.

I think you might be the person Maija told me about a year ago. have fibromyalgia, chronic fatigue and RSD and am in and out of a wheelchair because of the last. Now I have been diagnosed with Chronic Lyme Disease and I am very confused. I had just adjusted to this. I know nothing about Pompes disease...I must learn!

My daughter is going to San Miguel for a month of language school in June. She is so close to being proficient. I wish I were going. We also have a "daughter" who lived with us in Guadalahara. And one in Venezuela and one in Argentina. This summer, we are going to Croatia for the wedding of our "son."

Thanks again for writing on my "baby blog." I am so new at this!

Hugs,
Suz