DEAR SANTA...

Tuesday, December 1, 2009

DEAR SANTA...

I can honestly say that if Tyra had written her own lists for Santa they would have begun with gifts for others. Tyra LOVED to make people smile. Whether it was with their favorite candy or a silly message on her communication device. She found JOY in sharing with others. In fact she would get so excited that she would start to laugh before the exchange took place. The element of surprise was not her strongsuit.

As soon as the Red Kettles came out I knew to have dollar bills ready. Tyra wanted to put something in the kettle both coming & going and for those that know us - we passed lots of kettles. Tyra was a seasoned shopper aka shopaholic.

She also took great pleasure when I opened any gift from her as she knew tears were sure to follow. It never failed a card, a craft, a purchased item - anything addressed to MOM from TYRA was sure to bring about the waterworks from me and chuckles from her. How blessed I have been.

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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.