Let me just tell people who have never met Tracy before what a remarkable woman she is:-
Gareth was diagnosed nearly 3 years ago at a time when their daughter, Scarlett was just 18 months old. Dealing with the traumatic devastation MND brings to a family AND having to raise a young child, it takes a strong woman to cope with all that. And strength is something Tracy certainly has in abundance. She has been a full time carer to Gareth for a while now and he's a very lucky man to have her at his side.
Tracy on behalf of everyone who knows and cares for Gareth, we thank you sincerely - you are one of life's angels. X
Right, what have I been up to today?! Tried to drop my room key back into the bar this morning, I triggered the building intruder alarms !! If I was up early - then so was the rest of the hostel!!!
Über hot & stuffy. Only managed 2/3 hours sleep last night - it was like sleeping in a sauna!!
When I did wake up I realised I was naked on the bed in front of the window opposite some flats !! (Apologies if you're eating and you've just read that bit...........)
This mornings first few miles were a blur - I'm sure I was actually sleep walking at one point (along side a major A road !!).
Then, at Cricceth, I met another guardian angel today !! - Glenda Burke, my host for the next few days. (Sister of Phil, who sends his regards too mate).
She insisted she took my rucksack back to the house for the last 6/7 miles - and of course I didn't hesitate in accepting !!! My weary limbs had taken a battering for the last week, so I'll snap up those opportunities when they come !!
After a quick "refreshment" stop, I headed towards Porthmadog, no bag - just me, my huge horsefly bites and my flags !!
Good job I didn't fall asleep next to this :-
You may have spotted some little fluffy white things in the sky !! Yep we have some cloud at last !!
Most of the 2nd half of my walk today was along Black Rock Sands - a strange concept of allowing cars onto the beach :-
After what seemed like an eternity I eventually clambered off the beach, climbed a little incline and tread over soft sand (still grateful for having dumped my kit a few hours earlier!!!).
Greeted by Glenda, her husband Tony and friend Rhian, they accompanied me for the last mile or so.
I took in an awesome bubble bath and I was then ready to tackle my last mountain of the day - my evening meal!!! God, they know how to feed you here in North Wales! A fabulous meal ! (many thanks Glenda!!).
As well as emergency supplies of bandages etc, I was over the moon with these little masterpieces that arrived in the post today :-
As I struggled to drop off to sleep last night, I thought about how overwhelming all the support this walk is getting from home and afar! Whilst I'm out on the open road, alone at times, messages/tweets/texts etc are things which keep me going strong and give me added determination to recruit our MND army!! Thank-you everyone, your support really is mind-blowing.
(Even found out the blog is getting read here in Porthmadog too!!)
I'm totally shattered now but anticipate a much better nights sleep tonight! Im hitting the sack early.
Goodnight mate, hope you haven't allowed the birthday girl too much leeway with that credit card today !!! ;)
Tomorrow I go in search of another castle - Harlech. Day 10 beckons.
PS - Readers (and there's probably at least 20 of you now!!) - continue to spread the word and beg your mates to part with a few pennies!!!! And yep, I think £10k is a possibility now - wouldn't that be bloody fantastic !!
Great effort mate. Keep going. We are following your progress from the USofA (yes, your blog has made it over the pond!). Erin and Jeremy.
ReplyDeleteHi Justin
ReplyDeleteTracy here! Thankyou for your birthday wishes and lovely comments, you're very kind.
As you started all of this to raise awareness I thought I would expand on our experiences to give people a bit of an insight into what living with MND entails.
Not long before Gareth was diagnosed our family unit was completed and blessed with the arrival of Scarlett in 2009. We were a very active family, Gareth played football, worked hard and every weekend we went out to places as a family enjoying life. Like most people we were grateful that awful things like terminal illnesses were stories from others, we were all fit and healthy. Gareth hardly ever even caught a cold!
We were a young, very happy family and we thought we had our whole lives together to bring up our children and enjoy our later years together. Having both been divorced and through our share of troubles as individuals, we can both honestly say we had each found our soul mate.
July 2010 - I'll never forget it because we were out for my 40th birthday and Gareth started slurring his words. Justin - don't know if you remember we were all taking the mickey because Gareth had only had 2 pints!! Mind you he's always been a lightweight.......
Me nagging him to go to the doctor and several very painful tests later, in October 2010 we were given the awful news that he had MND. We suspected before the appointment but were still hopeful that he had had a stroke...imagine that! That's because being diagnosed with MND is one of the worst things you can hear, mainly because no one can give you any hope as there is no cure or effective treatment.
The best piece of advice we were given at that time by an MND nurse (which I will never forget) is do everything you want to do in life in the next 12 months.
And that's what we did....travelling around the globe every other month, creating memories for our children and us and doing as much as we could possibly fit in. Looking back I am so glad we did.
I can't begin to describe everything that has happened to us since then, it would create a book! There's the physical deterioration side that happened much quicker and more aggressively than we could ever have imagined. Within a year Gareth was in a wheelchair, forward another year and he could only move his neck and head.
ReplyDeleteBut there's also the emotional side which I want to share because I feel this is the hardest part to deal with and people cant see it. We have a fantastic team of people advising and caring for Gareth for all of his physical needs but the mental torture he suffers as a result of this disease is impossible to treat.
I've been thinking how to summarise all of this and I thought I'd describe it like this.
From the moment you hear the diagnosis EVERY single day is a day of losses.
I'm sure you can think of the big ones....not seeing your children grow up, get married, go to college, being able to move, to eat, to speak and so on. And they are hard enough to deal with, but there's also the hundreds if not thousands of small ones which crop up continuously and like I said, there's at least one every day.
Such as....I can't pick up my child anymore, can't comfort my wife when she's upset, can't play football with my son, can't eat at the table with everyone else, can't give my daughter a cuddle, can't scratch my head when it itches, can no longer contribute to a conversation, can't read to my children, go to the toilet without help.......the list is constant and endless.
So you find yourself in a constant sad, grieving state and although you try and smile, the realisation of the situation, the sadness, the anger, the frustration, the pure injustice of it all never, ever leaves your mind.
And that's where I feel Gareth and I show and find our strength. We don't sit and cry or shout every minute we feel like this, we give each other a knowing look at least once a day and then get on with it the best we can.
And I've come to the conclusion that quite simply the reason we have the strength to deal with this mental anguish is because of our love for each other. Love isn't all you need but it gives you strength and capabilities you never knew you had.
I'm not looking for sympathy or want to upset people, that's some of our story and I know we're not alone, this disease affects thousands of families every day, all we want to do is help:
- raise awareness....
- to help raise money......
- to fund research.......
- to find a cure.....
- so that other families don't go through this pain.
The reason we have even begun to help raise awareness is because of the amazing friends we have who are prepared to do mad, crazy things like you Justin!!
To everyone who has supported Justin in any way Thankyou. Please help by sharing our story, talking to people about MND and I hope that one day soon stories like ours will be a thing of the past due to MND.
Tracy
PS Gareth says - as if he'd let me out with the credit card on my birthday....he definitely hasn't lost his mind!!
ReplyDelete