FIRSTS & LASTS...

Saturday, February 6, 2010

FIRSTS & LASTS...

Many FIRSTS have come and gone. The 1st day of Spring, Easter, Mothers Day, my first solo bike ride, Back to school (boy was that one tough), of course there was Thanksgiving, Christmas, and entering the New Year - 2010 a year that only her memory will be a part of.

Today marks 11 months since I last held Tyra, since she took her last breath. So many LASTS are approaching and my heart is aching for what was. The moments of saying "this time last year" are getting shorter and the memories of "this time last year" are more difficult to remember. Tyra put up a good fight. She always always did her best at everything and I could not have asked for anything more of her.

I started this Blog to document Tyra's 'LIMITLESS JOY & BOUNDLESS LOVE'. Unfortunately some of the ENDLESS MEMORIES are painful, many do not know of her final chapter and I hope that putting it here will free some space in my head and allow my heart to be filled with the JOY again. So, in the coming month many posts will speak of "this time last year".

Oh, how I miss "This time last year" - We were home...TOGETHER

2 comments:

AnonymousFebruary 7, 2010 at 10:29 AM
What a beautiful and ultmimately painful journey. My thoughts and prayers are more fervent as you enter this anniversary time of both Tyra's birth and death. I think of you often.
an old friend
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AnonymousFebruary 7, 2010 at 11:02 AM
we miss her.
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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.