Dear friends, ultra extremists, runners and crazies across the world and to all those who have sent messages..................
First of all my sincere apologies for my very delayed blog and updates, it has been somewhat eight months since I last did a blog entry, whilst I don’t have to justify myself, I do feel I owe some explanation, especially to all those who have sent messages and general enquiries over the months.
After my rather amazing and epic first desert race, I was on an almighty high, and yes as with all things going up, eventually the emotion does come down.
I am normally very good at containing my emotion and handling very difficult situations, however realising a dream and fulfilling it, puts one into a different paradigm altogether; at the same time, I finally dealt with the death of my unborn baby girl called Aayra who sadly died on the 1st of January of this year, who was then delivered on the 3rd of January. Although I put all my reserve energy and emotion into fighting for my son whilst fundraising and getting through my Desert Run, I did put my grief on the back burner, so getting back from the desert, I was on both a high and when relived and that’s when grief took hold.
I had to go and collect her wee body shortly after I came back from the Sahara; we then held a ceremony which made somewhat of a closure in all of our lives. Shortly after that, I went into hospital and had major surgery, which saw me taking time out to recovery, it was a big decision first of all from an emotional point of view, do go ahead with this surgery, taking into consideration my age, my thrombophilia and lupus, and loosing 6 children previously; it was I that decided that I wanted my body to rest & heal and wanted to be free from horrendous pain, and deep emotional and psychological trauma yet again. Being fortunate in having one son already was and is indeed a blessing.
Not only the above, I had Bastian’s (my son) final diagnosis to accept and contend with as with a whirl wind media courtship. His diagnosis was finally published in the American Journal of Medicine and Genetics in April 2014. Although he is now diagnosed he is still on several studies being carried out by Cambridge and Oxford Universities whereby his DNA and Neuro spectrums etc. will be used and studied which will continue to enhance the medical world and all those who have since benefitted and who will continue to benefit.
Bastian in now one of six (1 of 6) in this vast world of ours with a syndrome called SETD5 (De Novo Loss) (Basically his major life building blocks which form the neurological basis of human life is damaged in other words his DNA is damaged, however even more scary, his RNA is missing) so really a gem of a child. It makes the fight and the challenges even more worth it. I am humbled and honoured to have such a wonderful child. It does not change life; it just makes it easier to understand him and how to implement new strategies in our every day, in order that he can have as near as a normal a life as possible. No one will ever really know what the future will hold, however for now, his consultants say he should live to a decent age.
Anyway upon recovery from surgery, I then had to face another massive challenge (still on-going) which is the biggest challenge of my life, making and taking full responsibility of my disabled son, extreme swimming, extreme ultra endurance running, managing charities, home educating my son, university degrees, and work research projects all pail into insignificance really; whereby I have ‘Taken on the UK Government’ seeing me going through arduous litigation and harrowing legal and court proceedings all in the name of securing a better future (education, physical, social and emotional wellbeing) for my disabled child. This is enough to put anyone into an early grave. I can’t say much at the moment, as yesterday (19th December 2014) I submitted my last set of litigation documents, and am now awaiting decisions from the Government Panel. However I suspect the fight is far far from over, in the interim I have secured the media, press, specialist journalists and political parties at the ready, all of whom are all lobbing on my behalf.
As I am currently home schooling/educating my son, my time is now even more limited than before, and by the time I have been a mom, housekeeper, research student, teacher, and have taken my training into the equation, I am shattered.
I was due to partake in ‘Race to the Stones’ (100) in June, but sadly had to pull out due to shoulder pain and University Submissions, anyone who has ever been to University can vouch for me here, as these deadlines can be the cause of even more grey hairs. I have to give my thanks to #MDX #Middlesex University who have been absolutely wonderful in supporting me throughout my hectic year. I however just about managed to pull through my 22 mile swim for Aspire over two day seeing it done in 12 hours in total.
Apart from this, I then went onto have my right shoulder replaced and repaired in October, and now feel just about fit and rearing to go. (See training plans in next blog) Although I have to say my Lupus is a bit flary at the moment, feeling it in my spine, I can only think that stress is one of the major contributors for this. Besides this, I also took time out in Greece, where I took my son to see his dad, whom he has not seen in a years.
So that is 8 months in a nut shell….. Seems so easy to pen down in a few words, but, standing before judges delivering my case, will be my highlight of the year, whereby the judge told the Government they needed to get their act together. Although 8 months of hell, in reality, it has taken a toll on my life all round. Were it not for venting through running and planning my next challenges, I would have jumped upon Satellite and joined it in orbit towards the P67 Asteroid. Your messages have been wonderful and I can only say, bring on the next 5 years of adventures raising awareness for my causes and being able to raise the bar in mental and physical attitude.
I was thinking of changing my meme to VintageUltraRunnerWillicott….. But will stick with virgin as I like be young and fresh, despite the grey hairs hiding under the flaming curls.
Before I head off for today, I will blog tonight about my 5 year Ultra Challenge Plan and my strategies for all of them. Stay peeled, some are really exciting. Going from one extreme to the other….. exciting times ahead, new sponsors, new challenges and hopefully a new frame of mind. The mind is ready; the body will tag along ;-).
Having just given another speech and presentation this past week, my charitable work is coming flowing in, and what with my next challenges stacking up, I will look forward to sharing them with you whilst at the same time, raising awareness and funds for those charitable causes so dear to my heart.
With #blisterfreewishes always
Jani
#UltraMarathonVirgin




