Thankful for...

Thursday, November 25, 2010

Thankful for...

This post could be neverending if I spoke of all the things, people, and moments for which I am THANKFUL. So instead of a novel, todays posting is an illustrated short story

handwritten...

I am so very THANKFUL for this Tyra original handprint Turkey which is proudly displayed in my kitchen year round.

Tyra had the sweetest, softest little hands around. They were however often kept fisted so getting the perfect handprint could be quite an undertaking.

(She would want you to know that these are youthful 'hand shots' pre-*BLING*)

I am THANKFUL for this fabulous greeting that welcomes me daily as I walk up to our home.

I am THANKFUL for this lasting impression from Tyra's final day.

I am especially THANKFUL for the many years I had to hold her in my hands.

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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.