Limitless JOY - Boundless LOVE - Endless MEMORIES: February 2014

Sunday, February 16, 2014

Where the HEART is...

February...

When did that happen??? Five years... when did that happen???

February is filled with images of hearts, sentiments of love, and the birth of my sweet girl. In February of 2009 these hearts went up on our sliding glass door. I always enjoyed decorating and Tyra delighted in any holiday that involved sharing treats (actually the holiday did not have to involve sharing treats for Tyra to make it so).

"Where the HEART is"

Shortly after these decorations were put up Tyra and I left for what was to be her final hospital admission. Valentines day and her birthday, February 26th, were spent at duPont (unquestionably surrounded by LOVE).

I returned to our home late the night of March 6th, no longer physically carrying Tyra though that sliding glass door but continuing to carry her in my heart where she took up residence from the moment I first saw her. These hearts remained in place over the next years. Fortunately, hearts are 'in season' year round. Although Tyra with her very 'twisted' sense of humor might have enjoyed my getting strange looks from neighbors if the month had been October and the stickers were witches. Oh how she enjoyed stirring things up :-)

As I was in the final days of packing up our apartment before embarking on this current journey I found myself sitting on the floor of the nearly empty living room a bit 'emotion-filled' when I looked up to see this...

This wall had been previously covered with decorations and this day was the first and perhaps most needed time for me to view the casting of these shadows - HEARTS filling my home and re-filling my heart with the knowledge that the love and memories are mine forever.

This Thursday marked Valentines celebrations at school. I was able to share some treats all the while thinking of my own sweet girl. I came home that afternoon with my shirt pocket covered in the days gifts from students & staff.

and...

I looked to the window of my new home...

“When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy. When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” ― Kahlil Gibran

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.