Limitless JOY - Boundless LOVE - Endless MEMORIES: March 2012

Friday, March 30, 2012

HIDE & SEEK...

Tyra's earliest nickname was "SUNSHINE". I sang this tune to her regularly and together the two of us enjoyed countless hours in the great outdoors.

It comes as no surprise that I sense Tyra's presence most often through nature's gifts. The past few days have provided me with wonderful sightings and the most JOYfilled new game.

With the early arrival of spring-like conditions most of our trees have displayed their glorious blossoms and are now in the cycle of dropping petals.

Most but not all...

This tree is a late bloomer. This tree is shaded from the direct sun for most of its day. This tree greets me each morning as I open the front blinds. This tree serves as a playground for Tyra's friends and this tree provides a sheltering presence for her treasured creation.

I keep a close eye on this tree.Yesterday when I returned home from my evening walk I spotted this.

I was instantly filled with JOY and greeted this gift with an audible "Well, there you are". Along with that statement came even greater JOY with thoughts of HIDE & SEEK.

I've mentioned before that surprising others was not Tyra's strongest suit. She could not contain her JOY and her laughter was a give away that something more was to come. This held true for games of HIDE & SEEK. Oh, the JOY in her giggle.

This morning I was able to venture out for a bike ride during which Tyra & I played the most amazing game of HIDE & SEEK. I saw her everywhere and as I rounded a curve in the road I felt myself wanting to exclaim "Ready or not here I come!" Her signature colors of princess pink, diva purple, and of course sunshine yellow were splashed throughout the 24 miles.

and if a period of time passed without a sighting I needed only look

to the blue (not quite Tiffany) sky.

I'm looking forward to playing again real soon...

"Ready or not here I come!"

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.