Communicating...so much more than "repeat after me & 1,2,3"

Monday, February 15, 2016

Communicating...so much more than "repeat after me & 1,2,3"

For my American friends you may remember mastering counting from 1 - 10 in Spanish (credits I think to Sesame Street) for my Thai friends perhaps it was counting in English.

After mastering Hello and Thank you I think it was counting that came next for me here. Today I struggle to recite my telephone number in English but it rolls off quite clearly in Thai.

I am fortunate to be communicating fairly well these days, add to that opportunities to meet new people with shared desires to serve children and the conversations are quite rich in context. I give great thanks for this.

It's also been...not sure what word I'm looking for. You see now that I can communicate more clearly it leads to others feeling comfortable to make inquiries. I've always considered myself an open book so this is fine by me. The conversations with new people contain talk of Tyra. To be able to describe that my daughter lacked verbal language but live a full happy life while being educated along her non-disabled peers is wonderful to share.

and then... the numbers.
Today - "Leuk ayu tao rai?" How old is your child
"Leuk sao chan sia chiwit 6 pi ti leaw" My daughter died 6 years ago

and because it's February and Birthdays are special days

"Tae wansuk-na bpen wan gert yee-sib see , next Friday is 24 birthday

and it 'hit' me that next month - I'll need to change my conversation to say "Leuk sao chan sia chiwit jet pi ti leaw" My daughter died 7 years ago.

Numbers...well...they suck, in multiple languages.

So grateful to have the words to say "chiwit tee dee, mi kwam suk, rian ruam, puen yuhr"

GOOD LIFE, HAPPY, Learn together ie inclusion, MANY FRIENDS

To be the mother of a child that LIVED.

LIFE & COMMUNICATION so so so much more than numbers

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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.