The beginning of the end

1 year post surgery....

The last year has offered both gut wrenching agony and so many moments we are greatfull for all the love and support we have. It has also moved slower then cold tar. I look for ways every day to offer myself and the insight I may have gained from our experience to the world. Although most days I find myself stuck and looking for a way to invigorate my daughters life, every now and then I offer a bit of "wisdom"if you may to those around me. I have an opportunity to write a paper that highlights all the aspects of life a "diagnosis" changes.

Making the decision to go back to school was, to be honest, hell. Anything from a mention of lab values to pediatric surgery triggers feelings of loss. So great and all consuming it's all I can do to write the words themselves.

Finding something to focus my efforts on, to pretend I'm normal, has offered me an outlet.

Today marks the eve of the one year anniversary of a surgery that would forever alter our lives. This hopefully miraculous act by a team of people dedicated to saving the life of my own personal super hero.

I only just today pulled up the site we created to keep everyone informed about the events unfolding.

Honestly I have been to scared to face the writing I posted and the completely candid pictures contained within.

Upon receiving a password reset, I took a deep breath and dove in.

The waters are all consuming.

The extrodinary hopes we had, all the prayers, all the dreams we placed in the medical teams hands. The undying love we HAVE for our son. It all went under the knife...

http://www.carepages.com/carepages/SuperAidsRexShunt/updates/2926899




As I sit here writing, I am humbled by the remembrance of sitting, late night in a Chicago home. My family all asleep while I write. Only hours before an irrevocable act would leave us forever changed as people, as a family.

The only thing I can offer is the absolute certainty my son was here for a reason.

I hear it all the time, "the had a message, a reason for being here."

Well, for me, this super hero, this love of a lifetime, this "never be the same" brief moment in time lives on forever. He lives in every breath I take. He lives in every time his sister tells me she sees a "big truck". He lives every in every time I hear his name or see his face.

I invite you to read a few words written one year ago and hope you are moved. Weather it's good or bad. Wether you feel something or not, this is one more amazing way my light, my everything, my SON touches everything and turns it to gold.