Numbers...part two...

Saturday, August 20, 2011

Numbers...part two...

Today's numbers are more of a sharing moment than releasing, for they are just some of the numbers that remind me of the GOODness in THIS LIFE.

Infinite - the number of times my closest friends will listen to me
                cry, scream, and post about how I miss Tyra and the life
                we shared together.

78 - the number of miles my body allowed me to pedal on this
        beautiful day

10 - the number of days before I embark on an exciting trip to be
         filled with family, friends, and FUN

5 - the number of hours before I am at the home of my friend of 33
       years to cheer her on tomorrow morning as she competes in
       her 1st triathlon

16 - the number of years I had to bask in the JOY & LOVE of my
         sweet girl on this side of heaven

My Blessings truly are too numerous to count and for this

I share my gratitude.

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OUR STORY

During the Fall of 1992 I met & quickly fell in LOVE with the most beautiful brown eyed bundle of JOY. Tyra was just nine months old and was in respite care while her 19yo birth mother, Chelle, was undergoing chemotherapy for Osteosarcoma. Chelle carried Tyra full term but as a result of uterine rupture Tyra was deprived of oxygen which resulted in a diagnosis of Cerebral Palsy. Chelle died in August of 1993, leaving behind her two daughters Tisha (3yo) & Tyra (18mo).

The evolution of our family was complicated but a family we became and how honored I am to be Tyra's mom.

We had an amazing fun filled 15 years which you will discover as the Blog unfolds. In October of 2008, Tyra was hospitalized with GI issues. Up to this time she had only 2 very short unplanned hospitalizations. We spent 6 weeks at AI duPont that October/November with the GI team working her up from 'end to end'. She was discharged in November on TPN with a dx of Pseudo obstruction. I questioned how at 16 this now presents after she spent so many years with great health. Upon discharge we got connected with an INCREDIBLE Diagnostic Referral Physician in hopes of answering this question.

Tyra was re-admitted to the hospital in early February as she was very lethargic and still not tolerating g-tube feeds. With this admission came many new tests. Tests that were sent to outside labs. While we awaited the results Tyra's condition worsened. She had several seizures on the floor and was ultimately transferred to the PICU in a non-responsive state. An MRI showed devastating injury at the level of her brainstem. Three days after this crisis lab results came back showing Tyra to have a metabolic/mito disorder PDCD. I held my sweet girl in my arms as she took her last breaths on March 6, 2009. To say I miss her is far from adequate.