Without words...

Sunday, May 15, 2011

Without words...

"Without words but with so much to say" this was a quote I used so often in describing Tyra. Well, tonight I am in good company.

Yesterday, during lunch with an old friend and a new one I was presented with this scrapbook. The book is filled with LOVE and the pages share the story of a fabulous adventure. The story itself extends well beyond the cover as

"Hers is a story without a The End"

I have so much to say but am working to find the words to do it justice. Until I do, I will say that I am grateful beyond measure for the continued gifts Tyra has sent my way.

1 comment:

Mrs. Grunden's ClassMay 15, 2011 at 8:55 PM
We are all grateful for both of you! Her story inspires more people than you could ever imagine. Thank you for sharing that with us.
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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.