Did you know that today is TYMES Trust Young Hearts Day?
Since 2004 the 29th of November has been marked by The Young ME Sufferers Trust in memory of a young teenager called called Jade Louise Scarrott. Jade had suffered for 4 years with ME and was tragically killed in a car accident at the tender age of 14, the age my youngest daughter is right now.
The TYMES Trust published a book in her memory to make her dream of helping to raise awareness about the illness a reality. This book is called “Young Hearts” and is a collection of poems written by other young sufferers about their illness.
Why poetry? Jade used to write her own poems to express her fear, pain and emotions whilst suffering from ME. She had dreams of compiling a book of poetry to publish and share with everyone to raise awareness and change public perception of what suffering young people with this illness go through. How they are unable to live a life the way well children do, instead they live on the sidelines just wishing they could join in. So the TYMES Trust finished Jade’s dream, the book was inspired by her, it contains a number of her own poems and was dedicated to her in her memory.
I have my own copy of this book, the poems make me smile and cry in equal measure as sadly I relate very closely to the emotions expressed through these poems.
If you wish to purchase your own copy please go via the TYMES Trust website as this way the profits from the sale will go towards the trusts services. They are a charity run by volunteers who either have ME or a child with ME, so have first hand experience of the illness. As a family we have found their service a life-line, as I know many other families have too. Therefore all funds towards helping keep this charity running are invaluable.
For this years Young Hearts Day the charity are asking for families and sufferers to light a candle to remember all the children and young people with ME and help raise awareness about this illness. Here is my photo, dedicated to my 2 youngest daughters; Tara now aged 14 has had ME for 5 years and Tasha, now aged 16 has had ME for 2½ years ~ I am also remembering all the other children, young people and adults whose lives have been irrevocably changed by this illness too.
This November The Dave has been busy growing facial hair and partaking in Movember for ME ~ raising funds for biomedical research into ME via Invest in ME Research, as the month is almost over I though I would share a photo with you of the end result…
As you can see, my luxurious beard beats The Dave’s by a mile, but all the same I applaud him for his efforts and putting up with the itching it has caused along with the ability to catch stray objects within the hairs! If you wish to make a donation please visit our justgiving page.
Also this month I have watched my eldest daughter mature and blossom. She has flown the nest and now lives with her boyfriend in a split level flat, thankfully not too far away. Moving day was a very emotional experience, it took two van loads just to transport Keisha’s stuff (who knew a teenager could stash away so much stuff in one bedroom?) and then several car loads for Jacks parents to bring his stuff over too. Between us parents and Keisha & Jacks friends Paige & Kyle we managed to get everything squirrelled away in it’s new home. It is now looking quite cosy and homey, although I’m sure as the months pass it will start to show their combined characters more.
|Paige with Keisha and Jack|
As if settling into her first home wasn’t enough to be getting on with Keisha has also, after hundreds of applications and job interviews, accepted an apprenticeship in hospitality. She has started and finished her first week and thankfully is thoroughly enjoying it, plus it comes with a full time assistant managerial job at the end of it. It feels very strange having her bedroom empty and her not here though and I dread the day the other two decide it’s time to leave too. However, silver-lining is that she is happy, healthy and doing well which is everything a mother could possibly want for their child.
As for the rest of us ~ Tara is doing well on Nisai which is great, although it takes an awful lot of energy which leaves her tired most of the time between. This is because she is losing weight due to issues caused by her ME, the dietitian and Consultant are working at ways to halt this and find ways of reversing the trend and getting some weight back on. However this means that the already limited energy which is a precious commodity for her is even more depleted and in order for her to do anything else she has to pace and be very careful with how she chooses to spend her energy.
|Tasha & Tara messing about on photobooth and webcam 🙂|
Tasha is enjoying her art and photography. She is still restricted enormously by ME and it’s affect on her cognitive ability. She has set herself a target to try and read a book in the new year, taking it very slowly, starting by reading a few lines at a time and hopes to then build up to paragraphs and then pages. She is thoroughly enjoying her time with her peer mentor and have planned to go out into town (with the trusted wheelchair) to take photographs of the Christmas lights in a couple of weeks time. Tasha has also just celebrated being with her boyfriend for 3 years, her Sam has stayed by her side and supported her even when she has been so ill and in bed for weeks on end. He is still learning about ME and how to support someone with it and this is enormously appreciated by us all. He manages to put a smile on Tasha’s face when she feels very low and manages to talk to her voices when they come to harangue her and makes her laugh and able to face them down. Thank you Sam, this photo of the two of them makes me laugh every time I see it 🙂
|Sam showing off his dimples with Tasha|
Both Tasha and Tara are doing well with their gradual exercise, they have slowly increased from walking 30 seconds a day to 1 minute 30 seconds. It is a hugely slow process but by increasing the time walking so very slowly we are hoping not to shock their bodies and to build up tolerance to gentle exercise.
I have managed to get my Christmas shopping done which is a huge relief as I was beginning to wonder when I would manage to find time to do it ~ I managed to get it all done in a mad flurry in 2½ hours ~ I reckon that must be some kind of record surely? My time is so consumed by caring for the girls, running to and from appointments and *insert drum roll* running my NEW super duper online web boutique, which incidentally if you haven’t completed your Christmas shopping yet you may well find yourself a bargain as I am offering a coupon of 15% off all orders in the run up to Christmas. It as a store which is still evolving as I have huge ideas for it and hope to be able to implement the changes in the new year. *end of shameless plug*
So folks, Monday brings us the start of December and it will soon be time to dig out those Christmas decorations and start pimping out the house. We are kicking off the festive season with a visit to the families in the ‘Shire and dropping off their presents as we won’t be seeing them after that until the new year. We will also be meeting our great-niece for the very first time too (now that does make me feel old). I have bought some new floral arrangements and wreaths to place on both The Dave’s and my mums graves, so they look fabulous throughout this winter until I can get back and tend to them again. We have some tough anniversaries to negotiate as December also marks many dates which relate to mum who passed December 2009. Although we are going to do our utmost to mark each date with something positive and try to smile through and remember the good times on this 5th anniversary of her leaving us.
So until next month I shall leave you with these 3 rogues modelling last years headgear 🙂