Limitless JOY - Boundless LOVE - Endless MEMORIES: November 2009

Monday, November 30, 2009

Let the SUN SHINE :-)

A different post was planned for tonight - but given the weather here and my mood after updating the Our Story section. I say let the

SUN SHINE

Sunday, November 29, 2009

HOPE...

The first Advent candle lit today represents HOPE. I have found it defined as confident expectation, anticipation of a sure and certain future.

HOPE could be seen in Tyra's trusting eyes.

HOPE was expressed in Tyra's signature smile.

In writing on HOPE, Pope Benedict states "it is not that they know the details of what awaits them, but they know in general terms that their life will not end in emptiness". Tyra's life was full of HOPE & far from empty.

Saturday, November 28, 2009

Creating this BLOG...

For weeks I have been following Blogs of mothers of children with special needs. Some mothers write of their childs current medical journeys while others write of their own journeys through grief. During Tyra's life we were blessed that given her level of involvement she was incredibly healthy. When she was hospitalized last October I did not create a site to document her medical journey as I really did not view Tyra as chronically ill. Yes, I knew she was not well but that is why we were at the hospital and she was going to get better. Since she died last March I have strived to not identify myself to others as the grieving mother. Yes, I miss her so very much. She was "The LOVE of my LIFE". I chose to parent Tyra, I fought to parent Tyra, I wanted nothing more then to parent Tyra for the rest of my life. THIS... is not the journey I had envisioned. With this said, shortly after Tyra died someone close to me shared "Tyra's life was not a tragedy, for you to succumb to your grief would make her story into a tragedy". So, this Blog will allow me to share HER LIMITLESS JOY - HER BOUNDLESS LOVE & OUR ENDLESS MEMORIES. I spent time today searching for a template to brighten up the page and decided that Tyra's images and stories are all that is needed.

HOPE - PEACE - JOY - LOVE

Those that know me have heard me say before that I am spiritual but not religious. I do believe in God it's just that I am not knowledgeable when it comes to formal religion. I have tried to live a good life 'doing the right things for the right reasons' just because. I had known Advent Calendars to be a countdown to when Santa would arrive and not symbolic of a Journey. As I continue on my own Journey I have decided that on each day of Advent I will share a piece of Tyra's story for it is full of HOPE - PEACE - JOY & LOVE. I smile at the colors, purple & pink, with their own symbolism but so TOTALLY ^TYRA^.

A Truly ^^TYRA^^ Tree

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.