Scarlett Rose Taylor,
22 Feb 2006 - 29 Oct 2006
The Adventures of Scarlett Rose Taylor
24 February, 2006 - 29 October, 2006
Aged 8 months, 5 days
We welcomed Scarlett Rose, our second beautiful daughter, into our lives on February 24th, 2006. She was of perfect weight, perfect size, had perfect Apgar scores, beautiful blue eyes, and was in everyway, as midwife Alison said, "perfect".
During her first few months we enjoyed our walks to school with big sister Cassidy and our curly coat retriever, 'Hollydog', and of course loved every moment of adoration from every teacher, parent, school support worker, and child who crossed our paths. We filled our time playing, sleeping, and getting to know each other and our friends, and getting on with life as a family of four. Scarlett and Cassidy, who was 7 at the time of her birth, developed a special bond, and from the day she was born Scarlett tracked her big sister's every word and move. Scarlett's face would light up as soon as Cassidy entered the room, with her own perfect smile projecting as a beacon of joy and light.
But even in those early days, when realised I didn't really need to wrap her for feeds, and that she was much more placid than our friends babies, and certainly was not a 'wriggler', we knew something was not quite right. To some extent we were relatively unconcerned (or not wanting to be), as a friends baby was 'a slow mover'. But by 6-7 weeks, her floppiness (and Mum's concern) started the bells ringing. Her neck strength had disappeared, her 'upset tummy' screams were noticeably softer and shorter, and the 'frog legs' she did at cuddle time, slowly dropped away.
A Child and Youth Health nurse managed to bring forward our paediatric referral, and hence, our day of reckoning. With Scarlett 3 months old to the day, David and I entered our appointment thinking that, yep, because she was still so perfect in every way, we could certainly handle any developmental issue we anticipated that this doctor could dish out. We left after only an hour, with our world shattered and broken hearts, and little doubt that our beautiful baby girl's future was limited. A day in hospital with a neurologist and blood test results confirmed our greatest fears when we were discharged with a diagnosis of SMA-Type 1. All we were offered was a literal death sentence, and, if we could keep her healthy, fit, and free from colds (and hence pneumonia), maybe a little more time in which to enjoy her.
We were immediately introduced to the Adelaide Women's and Children's Hospital Palliative care team, and received fantastic wonderful care, support and guidance (and great big shoulders) from 'our' nurses, Sara Fleming and Sharon Bowering, our paediatrician, Dr Phil Egan (who diagnosed Scarlett), and later on, our Art Therapist, Beth. We were also very fortunate to be supported by a fabulous team from Novita, Wendy, Andre and Emma, who provided the physio, speech and occupational therapy (and Andre, we loved those toys!). Each of these care givers gave so much to us, and despite our heavy hearts, ensured us times of fun, laughter and friendship throughout Scarlett's illness. With such great support from this team, our friends and family, and fortunately, few other illnesses, we did not ever have to return to hospital.
When the time came for the insertion of the nasogastric tube, Cassidy was told the full story. With Cassidy's help, we identified the experiences we wanted to share with our baby and little sister, and set about planning a way of doing them. We created special moments or 'adventures', to provide those 'memory snatches and catches' that were not blurred or caught up with daily routines, or attached to the activities, routines or machines that supported her life.
We bought a video camera to capture as many moments that we could, and celebrated as she achieved some milestones, like playing with her spoon, having her first cereal and, in a hilarious expressive moment, tasting potato! We celebrated her gurgles and chatter, initially ringing Grandma three times a day, and cried when she lost the ability to do this. Of the many sad moments during her illness, the hardest were when Scarlett was no longer able to breastfeed (at 6 months), and at the same time, she lost the ability to give that wonderful, full, great big open-mouthed smile that just showed she adored and loved us as much as we did her. But, we got a big, dimpled grin instead! Picking Scarlett up and cuddling her became such a risk to her airway, and promoted more secretions that we held her only for as long as we felt necessary, in order to avoid more frequent suction, unless she really demanded this. So we had to find other ways of providing the important stability, security, love and comfort that comes from touch.
When she was well, we found ways to exploit Scarlett's talents to the max! She showed us exotic places, foods and wares, and ensured we met our interstate and overseas friends and family. She performed all manner of artistic creations (art work, painting, feet and hand molds), became a queen of massage therapy, and learned to swim (in the bath!)! She baked, went to the movies, went camping, created and played with lots of new toys, and became the ultimate 'rock and roll chick' while we grooved to her favourite band, the Wiggles! Scarlett was a musical genius for her age, as she could discern the unique Wiggles sound from any others. She received, with grace, her many visitors, who came laden with cakes, chocolate and treats, champers and hugs (and the most amazing variety of lasagna!) We celebrated Scarlett's birthday (at 6 months) and an October Christmas, at 8 almost months, complete with pressies, crackers, a fully decorated tree and Christmas dinner. Given that at 6 months it became too risky to move her from the house, all this was done from home! All the way through her illness she smiled, and smiled, and smiled. She developed a special giggle that was barely perceptible to others, and she gave me permission to do whatever we needed to do for her. Even as her strength deteriorated, she was always ready with a big grin, for a bath, a play and sing along with us or her special toys, her sister, the dog, and of course, the Wiggles.
We were still not ready to lose her when the time came, and were in the process of making our new list of adventures. Her last days were difficult, but until she fell asleep for the last time, her grin never really disappeared.
At Scarlett's farewell service we celebrated her short life with a scarlet/deep rose-coloured fairy theme (we settled on a hot, deep pink), and my sister, Deena, played her fairy godmother role to a tee! We asked close friends and family to speak, and Helen recorded her own version of Eric Clapton's 'Tears in Heaven' for us to play. We played Katie Melua, the Beatles 'Goodnight' and showed a Powerpoint presentation of Scarlett's Adventures to Billy Thorpe's 'Over the Rainbow', that brought the house down, with tears of laughter and sadness. Toys are a big issue for babies with SMA, the louder they are, and more they move, the better! Scarlett received many of these toys, so we invited the givers (nearly half the guests!) to join us up front with her for a sing-along to a Wiggles medley. In lieu of the standard heads down, 'minute silence', we kept our heads up, voices loud, and made as much racket as we could! We concluded with Axiom's 'Little Ray of Sunshine'. Afterwards, the many children present let loose pink and purple fairy printed balloons and played with Scarlett's toys and books while the adults toasted her life with beer and pink champagne! The attendance at her service was overwhelming, with our many wonderful, supportive friends and family spilling on to the sidewalk. We would never have gotten through our journey without them all.
Our story is in many ways, very similar to others who have had to live through SMA, regarding the heartbreak and heartache, the progression of disease, the loss of basic abilities, and descriptions regarding the introduction of the machines, medications and tools that assist to keep children like Scarlett alive (suction, pumps, oxygen, morphine etc). However in this story, we preferred to share just some of our more positive and memorable experiences in the hope that others having to face such a difficult palliative care journey can reap as much joy from their limited time as we did. We found it was also possible to say goodbye knowing that there would many occasions whereby we would be unable to say 'we never got to do that with Scarlett', because we did! We hope you will too!
To our 'little ray of sunshine!!
"In my heart you'll always stay...
I learned from you that beauty need only be a whisper"
From "I cried for you" by Katie Melua.
Jodie, David, Cassidy, and Scarlett in our hearts XXX