Thank you Weatherman!
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I’m hoping the weather forecast will be accurate for once on race day! No more shuffling and sweating in Cayman ….. time to layer up and stride out!!!
Final Countdown
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With mounting nerves and uncertainty for November 1st, its time to ground myself and feel grateful for what ultimately has been an incredibly rewarding journey over the last ten months – emotionally, physically and mentally. Every time i catch myself feeling daunted by the 26 odd miles that lie ahead, I think of Persephone who faces her own daily challenges with such strength of spirit and enthusiasm that I can’t help but be in awe of her and everything she takes in her stride.
Our latest battle has been keeping Persephone at a healthy weight, facing the difficulties she has with her motor skills and movement that impede her effective feeding coupled with the inevitable decline in energy she experiences from her inability to consume and absorb the nutrients her growing body so desperately needs. Despite the latest developments, we ruled out, by a process of elimination through tests and studies, the more menacing possibilities that might have underpinned her weight loss. We breathed a sigh of relief upon confirming that the tumors in her brain and spine have not grown significantly. Our plan of attack is a super-high calorific diet coupled with potent supplements and half days at school to conserve energy. We’ll be monitoring the results over the next six weeks in the hope of avoiding surgery for the placement of a feeding tube, which would be the next logical step in improving her nutrition. The whole family has been enjoying (a little too much) the indulgent snacks that we’ve been encouraging our little fighter to eat at every opportunity but for her sake, we’ll suffer the occasional bowl of Haagen Daaz …
The amazingly dedicated team at Miami Children’s Hospital makes every visit one to remember, from doctors taking time to be her ‘bedside buddies’ with hour-long ‘Guess Who’ and ‘Sorry’ play sessions, to visiting princesses and support dogs to cuddle. Every time the hospital succeeds, to our disbelief, in creating fun and happy memories in Persephone’s heart, so much so that she is always excited when the next visit to see Dr Bauer in Miami comes around! Thank you Miami Children’s Hospital for making this bumpy road of NF and its often sinister surprises a smoother ride for us all.
CTF Platinum Pacer
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With less than a week until race day, we want to say a big THANK YOU to everyone who has donated so far, pushing us way over our $10,000 fundraising target and raising much needed funds to find a cure for Persephone’s genetic condition, neurofibromatosis (NF). You all deserve this recognition from the Children’s Tumor Foundation for helping us to spread awareness of NF!
End in Sight!
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It has been a rough few weeks but with the big day just one week away, the end is in sight! I’ve been adhering to a strict regime of low impact training since I finished the Kauai half marathon and discovered in the last few miles a niggling injury which ultimately has been diagnosed as a fractured bone in my right leg. A daily grind of acupuncture, massage, rest, heat and reformer work has been made much easier with my little fighter nursing me every step of the way! How quickly things can change in this endurance game!! The Kaua’i event was definitely worth it through and I loved every minute until the last few painful miles!!! After rediscovering the island 15 years on, the pure energy and spirit of Kaua’i remains unchanged notwithstanding the slow spread of development across the island. I understand why I was drawn back to this wonderfully spiritual place with its prehistoric sense of majesty. What better place to be humbled and reminded to trust in nature and life, not to try and control the waves but learn to ride them! The beginning of the race was absolutely magical, watching this makes me want to do it all over again. Maholo!
Shout Out to Jessie’s Juice Bar
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The countdown is on!!!!!
In 8 weeks I will be running in the 2015 TCS New York City Marathon for my daughter Persephone who suffers daily from the physical symptoms of brain and spinal tumors as well as learning difficulties associated with the genetic condition Neurofibromatosis or ‘NF’. I am running as a member of the Children’s Tumor Foundation Endurance Team. The Children’s Tumor Foundation is a non-profit organization dear to our family’s hearts and is dedicated to Ending NF Through Research and to improving the health and well-being of individuals and families affected by NF.
Neurofibromatosis is a genetic disorder that affects 1 in 3,000 people regardless of ethnicity. In the past 6 years our daughter Persephone has undergone regular MRIs to monitor the growth of tumors in her brain, optic nerves and spine as well as regular occupational and speech therapy to deal with developmental and learning challenges. Despite living with this condition, Persephone has an incredibly positive spirit, bringing love and light into the lives of her family and friends. I am proud and excited to run to raise awareness for NF and show Persephone that with determination and hard work, anything is possible.
There are so many local businesses in Cayman who have supported our family’s fundraising efforts over the years. Today, we thank Lachie and Jessie from Jessie’s Juice Bar in Camana Bay for stocking our ‘I Know A Fighter’ hats – please stop by and grab one for summer. $20KYD for adult or kids sizes, all proceeds go to the Children’s Tumor Foundation to fund research for NF and help children like our daughter Persephone living with this devastating genetic condition. Limited numbers also available at Bon Vivant, Carey’s Karma Closet, Kid’s Karma Closet, Anytime Fitness and Little Trotters Nursery.
Heading for the hills ….
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Its been a long, wonderful summer and I’ve been lucky enough to travel the world with my three little monkeys. Combining marathon training with globetrotting has, however presented its challenges – from navigating new cities to squeezing longer runs in between sightseeing and busy itineraries. This article amongst others was invaluable holiday reading and helped to keep things in perspective …! With 8 weeks to go until D-day the logistical nightmare of fitting in runs whilst travelling throughout the UK, America and Italy with three small children has proved to have been worth the effort. Having trained in my home town Grand Cayman for months, the hills of the English countryside and Tuscany were a bit of a shock to the system – flying downhill into Tuscan sunsets felt amazing, and running back uphill in the dark predictably painful …. often necessitating a post-recovery glass of Chianti. However, with the help of some very dear friends and family (in the form of affordable childcare ..!) I’ve kept up my training and my mileage and am now ready for the real work to begin!
With the kids settled into the routine of school, I’m once again heading for the hills and packing (literally as I type) for the Kauai marathon to run the half marathon as part of my training. The one and only time I’ve visited Hawaii was almost 20 years ago and I’m looking forward to a sentimental reunion …. once I get over those hills!!
Cayman Kind
‘Cayman Kind‘ is a phrase that has become synonymous with the strong sense of culture, respect and community in Cayman. This is a sentiment we’ve certainly experienced across the Island and in day to day life through our involvement with organisations, events and friends and colleagues interested in spreading awareness of NF and supporting the Children’s Tumor Foundation. Today marks five months and counting until the Marathon and I have so many people and organisations to thank for their support so far, I’d better get to it!!
One of many community groups that Persephone has been involved with since she was a toddler is the Centre Pointe Dance Studio (CPDS). Miss Anita and Miss Sophie have encouraged Persephone in dance and musical theatre from an early age. Although she’s struggled with some of the more technically challenging moves, she’s always loved music and shown great enthusiasm for learning the routines and joining in with her friends. Earlier in the year, CPDS hosted a Valentine’s Day fundraiser, donating hair ribbons for the tiny dancers in Persephone’s class in exchange for small donations to the charity – nearly $700 USD was raised in just a few days.
Thank you to the teachers and all the tiny dancers at Centre Pointe Dance Studio and Monika and Lucy from Creations Unlimited for the beautiful pictures they took of Persephone for the flyers.
Today is World NF Awareness Day and I have to admit, I desperately needed a reminder of what motivated me to undertake this challenge over the last week. How could I remain so stubbornly self pitying in light of everything that the CTF has done to raise awareness, awareness which ultimately leads to funding, research, treatments and a better quality of life for NF sufferers ….. I dare to imagine, perhaps also one day a CURE.
On a brighter note, to celebrate this wonderful day, there are a number of monumental landmarks in cities across the globe lighting up in the NF colours of green and blue to spread awareness. What better way to resuscitate the soul than with bright lights!! Give me fireworks, neon shopfronts, even better, that first glimpse of the glittering Manhattan skyline after time away from my favourite city. I’m hoping my husband might witness one of these glowing beacons tonight in New York along with many others, who might then start conversations that lead to interest, education and action …. here’s a list, please send through any pics you take or post to instagram to spread the word #EndNF.
Gone Girl
This week has been a challenge – having come down with a ‘mother’ of a flu bug, rivalling that of the unforgettable 2001 Indian super-virus that left my travel companions and I incapacitated in Delhi for days (there’s nothing like the intimacy of intense physical illness to bring people together). I’ve spent the week battling what has been, lets just say, an offensive from all angles, leaving me too weak to do anything requiring more than a 10-minute burst of effort (and requiring a subsequent 45 minute rest on the sofa) and feeling very, very sorry for myself. I’ve missed my training desperately, feeling blobby, weak and flat. I’ve attempted, rather unsuccessfully, to soldier on through a week of interminable after-school activities, projects, writing deadlines, temper tantrums and near-meltdown situations involving little more than ’spilled milk’. It has been an incredibly frustrating and humbling experience and made me even more grateful for my health and ability to take on this challenge – in the hope that it will lead to an improvement in my daughter’s quality of life through increased funding, research and treatment for NF.
Finally, its time to shake off the self-pity and get back to the prospect of training – I’m dreading and craving it – the following few weeks will be frustrating, yes, insurmountable? No. Reality check – I AM getting better, there IS an end in sight and I still have a GOOD amount of time to train (any thoughts of ‘Please don’t let this happen during the week of the marathon …’ will have to take the backseat for now). Having said that, any prospect of attempting a ‘short run’ here or there has been well and truly quashed for the moment – a mad dash this morning to turn off the house alarm I’d inadvertently set off in my post-liquid-codeine haze settled that inner debate pretty quickly when I reached the top of the stairs wheezing.
I’ll need to check the ‘all or nothing’ attitude, respect my health and body and accept that the following few weeks will be a somewhat ’slowly but surely’ affair to get back to feeling fighting fit.
Happy Mother’s Day! – Running for Life
Happy Mother’s Day everyone!! Today, I fight NF by spreading my own message and supporting the running community in Cayman. Visit Caymum to read Running for Life and join Millicent Webster in promoting a safer driving culture in Cayman. A healthy lifestyle plays such an important role in maintaining a strong and close-knit community – lets preserve our unique way of life in Cayman through education and respect.
5 Boro Mother 
