Numbers...

Friday, August 19, 2011

Numbers...

Numbers... they are everywhere... dates, measures, alerts...

They are in my HEAD. Some floating in and out. Some ingrained. Some illicit sadness others joy. I need to free up some space so out they come...

16 - The age I most often reference Tyra as being.

17 - The age on her death certificate. Tyra turned 17 on the PICU
         in a comatose state.

6 - The day of the month she took her last breath.

29 - The number of months since I last held her.

40 - The age I'll be turning next month. I often say "I don't know
       when this happened". I think people find this statement to be
        joking in nature, like many who question their aging. I am
        completely serious "I don't know when this happened". The
       years 22-38 *** where did they go??? I have pictures. I have
       Endless Memories as the name of this blog indicates.
        What I want...

16 to be 19 - The age Tyra would be today.

6 to be 19 - Her to be here on this calendar day, breathing.

39 - My age today, without questions on where the last 19 went.

There are many other numbers, that I am sure to share - release, for now I must return to the number of emails and voicemails overfilling my 'boxes'.

Thank-you for the space....

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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.