Changes...

Tuesday, August 9, 2011

Changes...

Some say change is good. Some have trouble with change. I just say that change IS.

It happens. We change - our bodies, our roles, our ... The people physically in our lives change - some leave, others enter.

In recent days I have been thinking of the changing of roles. My identity, the role I have placed most value and pride in is - Tyra's mom. Wasn't hard to guess that I am sure. My email address, my Face Book profile, the van I drive, all of it tied to that role - Tyra's mom.

I will always be Tyra's mom. I will always long to hear others call me that. So DON'T stop!!! Just as my parent's death made me no less than the daughter of Ralph & Sidney. Tyra's death has made me no less her mom.

With all this said. There are some changes occurring in my life. The return of joy. My smile at a whole new level. The emerging of feelings and hopes that I had not imagined possible.

Change IS.

Silly as it may seem or sound to others I have struggled with changing my profile picture on FaceBook. Since signing on close to 3 years ago this image has represented me -

I've not changed it. When others have joined in on acknowledging special days or causes through the image on their profile. This image has remained on mine. Always Tyra's mom. I had not thought I would recognize myself without her. Today I look in the mirror and am amazed and oh so grateful to see again the Joy. I am more recognizable today than perhaps at all in the 29 months since she died.

With all this said I am not ready to see a photo of myself alone (I know she is in my heart). So the following image will stand in for now.

This picture was taken at Tyra's grave site early one recent morning after a long day and night of change. I will share more on this but for today I acknowledge that, Change IS...

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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.