Our Story Pt 5

Part One, Two, Three and Four are here.

Again this coming year of 2004 we were to be blown away by the kindness of strangers and friends. It became our mission to get a vehicle* to transport Taylor to school , church and family functions. In the meantime we had the most loveliest Maxi taxi driver at our disposal.

Taylor worked hard and very vocally at her physio each day and had a love hate relationship with the lovely Silver Chain ladies. It was this stubbornness and independence that would see her make the slow improvements that were needed for recovery.

We really wanted to get her back to school and after much persuasion and discussions the school agreed to trial it. Each day we would go by Taxi and then I would return home...Taylor would stay with her assistant for half a day then we would make the return trip home. Where she would spend most of the afternoon resting and sleeping the outing off, right before her physio buddy and the girls for the shower routine arrived.

We learnt to use all sorts of gadgetry...hoists, shower gadgets, new wheel chairs...it was all part of moving forward. She just loved being at school and managed to hijack the class often with her antics....she was rewarded with leading  roles at the assembly  and a legion of friends to always be her assistant....these things are what we had prayed for and knew were possible.

Life seemed to be good...lack of sleep may have been clouding our judgement but we were excited about the decision to extend our family....which happened quite quickly.

During the October school holidays we had two important appointments to attend......

A 20 week baby ultrasound  and an MRI.......Taylor was bitterly disappointed that we chose not to find out the sex of the new baby......which miraculously enough was to be due on her 9th birthday......

The MRI proved to be the miracle we had been praying for.....NO SIGN OF TUMOR.....6 long years and we had made it to this point.....with much hard work from Taylor...persistence, patience ( although at times in short supply),huge amounts of pray and many tears and sleepless nights.

She returned to school on the Tuesday after the school holidays with what seemed to be a new resolve....we are not sure what changed but everyone commented independently that she had turned a corner....the physio, the teachers at school even the silver chain girls were suspicious of her co-operation...... She farewell her friends on the Wednesday with quite the fanfare which wasn't all that unusual   

Thursday the 21st October almost 12 months to the day since we returned home from the dark  4 months in hospital she awoke feeling unwell...

The routine usually was to dress for school before hoisting her out of bed then breakfast etc. So this morning I suggested that going to school maybe wasn't an option...oh my she was having none of that....so we dressed in school uniform and hoisted out.....something clearly wasn't right. I called Derek at work and we decided a trip into the hospital was probably the safest thing to do just in case...he came home immediately and we agreed that he would travel by ambulance with her and I would stay and pack a bag just in case we needed to stay.

By the time I arrived they were contenting with a grumpy hungry 8 1/2 year old that was not having a bar of being stuck in there.

In their wisdom they transferred us to ICU to see if they could determine why her blood and test results were coming back a little off......

Nothing unusual for us ..nothing was ever straight forward with our Taylor. As the day wore on she became a little more sleepy and unpredictable...they decided to sedate her and see if they could even her out a little.....

Life changed for us in just a couple of hours.......we found oursleves back in that original room of 6 years earlier being told that she has become very unstable and they weren't sure what was going on......

They told us to call family.......we did........the clock turned over 5 something........we said our goodbyes.......we prayed....cried......went numb....demanded for something to be done....went silent.....prayed some more......and were left wondering what just went wrong.....

Too much of something for her very brave heart.....not much to do with a tumor.....except the battle had been to hard....her strength just wasn't enough.....we couldn't do it for her.....we tried......but it wasn't to be.....

our precious, hugely engulfing , gorgeously stubborn big girl was needed somewhere else.

Now eight and half years on we still cry...we share her with Meg and Fraser constantly...life changed that day...we changed.     

Thank you for sharing in our story...so many details left unsaid so many emotions left to pour out...but the timing felt right to share our story...in the hopes that maybe someone's journey could benefit....  and that you get to know a little more about our precious Taylor Louise. x

    

 *We did get the vehicle thanks to some furious fundraising by friends....didn't managed to have it converted in time.

Fraser joined our family safely......a week after his due date..... 5 months short of missing his big sister.