Her page...

Tuesday, September 20, 2011

Her page...

It is that time of year again, and again I am honored to have Tyra remembered with the many other much loved & missed children who were cared for at the AI duPont Hospital for Children. Again, I also struggle to 'capture' her story on an 81/2 x 11 page. Again, I am saddened that my favorite picture to be used in the slideshow remains the same. No new photos of my sweet girl.

This year though too I am grateful. Grateful, to have the opportunity to share The Parent Thoughts during the service. Grateful, in the healing recognition that Tyra LIVED! It is because of this that I did not include dates on this years page. What are dates anyway but numbers? It is the LIVING that matters most.

LIVING with GRATITUDE this Life!!!

No comments:

Post a Comment

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.