Limitless JOY - Boundless LOVE - Endless MEMORIES: January 2011

Thursday, January 6, 2011

Crooked Halo...

A friend and I exchanged thoughts this weekend about how our girls might be spending their time together in Heaven. We agreed that they often are sure to be laughing at their

"HOT MESS MOMMAS" .

Tyra was an angel here on Earth, so sweet, trusting, forgiving, generous, and joyful. She was also feisty, temperamental, and stubborn - absolutely PERFECT. Tyra was the best partner to dis somebody with. I remember her and another young Diva hanging out by the elevators during our first inpatient stay and talking about people. Well, Tyra didn't "talk" in the traditional sense but she certainly encouraged lil miss K's slurs. That was my girl. Don't get me wrong I didn't endorse bullying. The unknowing ~~objects~~ offenders in this case were people that truly ought to have known better, made friends with a mirror, or at least acknowledged the existence of combs, color combinations, and fit.

Back to the ^Angel^ image. I was reminded of a souvenir we got during a trip to Great Wolf Lodge in the Poconos (highly recommended). We decided to have caricature picture done together. I mentioned that Tyra was my angel and the artist went from there. Of course, Tyra was in her glory. She was a fan of her reflection, the camera, and no doubt a portrait (Misses Narcissus a nickname only I was allowed to use). The artist clearly picked up on Tyra's true spirit...

Take note of the crooked Halo and hand placement. That's no peace sign. My Angel is giving me bunny ears & LOVIN it!

I have asked Tyra not to corrupt young Mary and to stop knocking off her tiara.

( I think there is room up there for some Jr Princesses)

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.