Tuesday, 10 August 2021

There's More to Life Than Books You Know...But not much more. Supporting Acorns Through Poetry

 There's More to Life Than Books You Know

But not much more...


The Poetry of Anthony Frobisher


I write. A lot. Since my daughter Milla passed away in December 2016 I have not stopped writing poetry. Poetry was an initial outlet to express my thought and emotions. I channeled my sadness, anger, loss, frustration, grief into my word and began to share them. I wrote for me, to help me overcome and deal with the most painful loss a parent can experience. It was a catharsis. But, the poetry I shared found an audience. It resonated with other people. I began to write more frequently and expanded my range of ideas and subjects - everything from travelling to social issues, the confusing state of Britain facing both Brexit, then the global Coronavirus pandemic, poetry reflecting the value of silence, the importance and jo of nature and the ongoing refugee crisis. 

My poetry is available in paperback form, and most are available as Kindle eBooks to download.

In support of Acorns Children's Hospice, two of my books are available with all proceeds being donated to Acorns. 

Let The Acorns Grow

Let The Acorns Grow is a collection of poems with two main themes. Hope and Memories. With 10 5* reviews on Amazon, Let the Acorns Grow has proven my most successful book and has raised well over £200 for Acorns. 

It is available via this link - price £10 with free UK delivery




A Poem A Day 2021

Every day in 2021 I have been writing and sharing a new and original poem. In fact, some days I write and share more than one. It is an extremely inspiring and creative process and one I have had the support of a number of well known poets who have collaborated with the 2 published volumes (Volume 1 - January to March and Volume 2 April to June) and been generous with their time and words and allowed me to include their poems in the books. The poets include Brian Bilston. Ian McMillan, Henry Normal and Dean Wilson.

A Poem A Day 2021 - Volume 2 April to July is available with all proceeds being donated to Acorns.

There are three different themes;

April - Weathered Change

May - Kindness and Reflection

June - Summers -Then and Now

Price £10 with free UK delivery, link below




I post regular poetry to my Instagram page @apoemaday2021

I select my favourite poems and upload them to my website


All my poetry collection are available here to purchase in paperback or Kindle eBook download




A final poem. A video of me reading the title poem from Let The Acorns Grow, a poem that reflects how important Acorns are. This poem was featured in the Acorns Children's Hospice year end online video production in 2020. I have also read Let the Acorns Grow live on BBC Hereford and Worcester. 


Please consider supporting Acorns and donate if you can. So we together can Let The Acorns Grow.





Many thanks and best wishes,

Tony Frobisher
August 2021


Saturday, 7 August 2021

David Wall - Acorns Inspirations No.2

Acorns Inspirations - No.2 

David Wall

Tireless and dedicated fundraiser for Acorns Children's Hospice.

Fundraiser, birdwatcher, walker

and maybe one day a wing-walker. 


This is the second in a series of interviews, Acorns Inspirations. Meeting the people who devote time and energy to selflessly raise money on behalf of Acorns Children's Hospice. I want to shine a well deserved light on these unsung heroes who push themselves to support Acorns.


Tony Frobisher

Parent Carer Champion
Acorns Children's Hospice

August 2021

David Wall
One in a (5) million (steps)


You could always take the bus....

Last Thursday I drove up to Baggeridge Country Park near Dudley to the west of Birmingham. I had intended cycling from Worcester, a round trip of 60 miles (many of which are quite hilly). However, I decided against it as on Tuesday I had cycled 100 miles, with 6 climbs up the Malvern Hills on my bike. My legs were still feeling it and I couldn't face another long ride. I'm 53 and not in the Tour de France. I rested and recovered. 

But what if you have a year long goal? Something that is so ambitious to achieve that in effect you need to be out every day, day in, day out, whatever the weather. Whether you are tired or not. And added to that, the challenge you set yourself is to walk 5,000,000 steps in 1 year, to raise money and awareness for a charity, but your job is sedentary?

That is exactly the situation the amazing man I went to meet has placed himself in. 

David Wall is a 48 year old bus driver from Coseley, West Midlands. A devoted grandfather and an incredibly dedicated, determined and driven (pardon the pun) fundraiser for Acorns Children's Hospice. 

In 2020, Dave began fundraising for Acorns. He set out to walk 4,000,000 steps throughout the year and achieved well over his target. His walks grew in ambition and length, but whatever the great British climate threw at him, from heatwaves to torrential downpours, Dave spent seemingly every spare moment pounding the pavements and canal towpaths around Coseley, Tipton, Dudley, Birmingham and beyond. 

As 2020 turned to 2021, most people would have said, yes, job done. Over 4,000,000 steps and lots of money raised. Rest up, feet up,.. let's watch The Wizard of Oz on the telly. But not Dave Wall. 'I thought, well, I did 4 million, why not do 5 million  this year?' 

Every month he plans an endurance walk or event. He has walked from Wolverhampton to Worcester, Walsall to Lichfield, walked to every Premier and League football ground in the West Midlands and completed a 12 hour nonstop walk on Cannock Chase. 

Not satisfied with that, he has taken on endurance cycling events and as I type this is covered in thick sticky mud, soaked to the skin, slogging his way around a 7 kilometre course proudly wearing a (once white) Acorns Children's Hospice running vest as part of the Mudnificent 7 mud run event. 

Walk on....

Tony (L) and Dave (R)
Before the rain arrived


Dave and I met in Baggeridge Country Park on a pleasant warm morning, but with the threat of rain hanging around. Undeterred and bolstered by a coffee we set off to walk a route through the forest trails. We stopped with unexpected frequency...'That's a young buzzard there....ah, wood pigeon...' Dave is a keen ornithologist and enjoys nothing more than a trip somewhere far and distant to catch a sight of a rare visiting bird. Last week it was a trip to Lincolnshire to see the A380 of the bird world, an albatross which had flown all the way from Antarctica. Almost as far as Dave has walked this year......

Thankfully the rain held off and we sat down for an interview. I wanted to know what drove Dave to come up with the incredible events and challenges has has done and what motivates him to dedicate so much time and effort to supporting and fundraising for Acorns.

This is an edited transcript of our interview

(D) Dave Wall (T) Tony Frobisher

Tony (T) So Dave, how did you first hear about Acorns?

Dave (D) Through the football, as the Midlands teams have  all supported Acorns haven’t they? And driving past the Acorns Hospice on the bus and hearing about the Black Country Hospice appeal. I thought, you know, how can it happen, that it could possibly close?

T: Why did you want to get involved and fundraise for Acorns?

D: I just wanted to do something for Acorns…it’s for the children isn’t it? I want to help them.

T: Can you mention some of the fundraising events that you’ve done and how you came up with the ideas?

D: Well, I was thinking of something I could do, you know. I’m not a runner or a cyclist, I walk a lot, so I just thought, walking. It snowballed from there, doing lots of steps to work and back. I thought of ideas to rejuvenate it (the fundraising) every month. To keep the interest up. Initially people will support you, but you need a reason to keep going, to remind them. So I can mention the event on the day or the night before.

T: And you did a couple of cycling challenges, but with a difference?

D: Yes, a 12 hour static (exercise) bike ride and a 24 hour static bike ride. It was my wife Sharon’s idea! The first one brought in just over £1,000. I was gobsmacked, I really was.

T: So all told, how much do you think you have raised?

D: It’s around £,4,500 so far.

T: That’s amazing

D: If I get to my target this year, it should be £6,000 That’s just from walking….people can do it if they want to do it, you know?

T: And what’s the most interesting or satisfying part of fundraising? Is it coming up with the challenges, the planning, the fundraising or that feeling at the end when you finish, you know a job well done?

D: It’s nice to get your task under your belt – done. But it’s bringing the money in, that’s what you want. You know I get more enjoyment in making money for Acorns than I do for myself. It’s great when you get that ‘ping’ when someone donates.

T: Is there anything difficult or frustrating that you find about fundraising? Or does it still inspire you and motivate you?

D: The only thing is, I wish I could do more. I mean that, I really do.

T: You’ve got some more challenges coming up. What’s next for you?

D: I’ve got the Mudnificent 7 on Saturday (A 7 kilometre muddy obstacle course), I’m going to attempt 100,000 steps again – that's a 50 mile walk – or at least beat my personal best, 88,000 steps. And then I’ve got the Virtual London marathon in October.

T: If you could do anything, from climbing Everest, Kilimanjaro, wing-walking, skydiving, marathons, what’s for you?

D: I fancy wing-walking or sky diving; I might do both of them!

T: You could wing-walk, then jump off it….! So who inspires you, motivates you, encourages you when things get tough?

D: The children obviously, people like yourself, the other fundraisers, and the people who support you as well. It’s nice to know people are supporting you.

T: What’s your message to people who haven’t fundraised but are maybe thinking of it?

D: Just go for it, whether it’s for Acorns or anyone, just go for it. I get a lot of satisfaction from doing it.

T: Who would you like to thank

D: I’d like to thank my wife, Sharon. She always supports me, comes up with the ideas. I’d like to thank people like yourself, the supporters, my colleagues at Walsall National Express Depot – they’ve been brilliant, the community in Coseley. Acorns – the team at Acorns has been fantastic, they’re always there, they help you. Craig Punfield from ITV Central – he’s been great. And Tina and Darren Smart too for their support. They generously donated a gift of installing blinds as a raffle prize. I’d also like to say thanks to my friend Derek Hall, he does a lot for charity too and is a fellow bus driver. I have been really inspired by Derek and what he does for charity. And anybody else who has sponsored me.

 

I then asked Dave a few 'quick fire' questions to get to know a little more about him

1. Hobbies and Interests

I love bird-watching and photography 

2. Which football team do you support and why?

The Villa - Aston Villa. Probably because of Brian Little and his long hair (in the 70's)! Other people in the family support West Bromwich or Wolves, but Villa for me. Up The Villa!

3. Food / Dish  

I love a homemade curry

4. Music 

Michael Jackson, always loved his music and Erasure too.

5. Holiday destination or somewhere you’d like to go 

Anywhere in the UK - Scotland

6. Favourite place in the UK? 

Anywhere with birds!

7. Who would you most like to meet for a cup of tea and a slice of cake?

Living - Chris Packham, I admire what he does for birds, especially raptors.

Dead - An Egyptian Pharaoh 

(Note, Dave is very interested in Egyptology / Archeology and has visited Egypt, travelling as far south as Aswan with his wife Sharon, across the Sahara - with an armed guard!))

8. Favourite book, film, TV programme 

I don't get much time to read, but film - Alien (the first movie) , TV Dr Who, Phoenix Nights and Max and Paddy. 

9. Running, walking, cycling, swimming or something else?

I'd love to be able to run

10. What do your family, friends and colleagues think about your fundraising?  

Everyone is really supportive


My thanks to Dave Wall for meeting up and sharing his motivation, inspiration and reasons why he is so dedicated to supporting life limited children across the West Midlands via Acorns Children's Hospice. Good luck for the next challenge...and the next and the next and on finishing off those 2,000,000 more steps to reach 5 million step in 2021.

Walk on Dave, you have got so many people behind you. Thank you for making a difference.


Find out more and support Dave Wall on his incredible 5,00,000 steps for Acorns challenge and follow his progress with his continued fundraising challenges. 


Donate via Justgiving


Connect via Twitter


Connect via Facebook




Baggeridge Country Park
before the rain....



Find out more about the work Acorns Children's Hospice does supporting life limited children and their families across the West Midlands in their 3 hospices in Walsall, Selly Oak and Worcester



Acorns Children's Hospice



Get in contact - if you are a fundraiser or supporter of Acorns Children's Hospice or if you would like to know more about the hospice. If you have any questions about fundraising, organising your own charity challenge event and how to make a difference, I am always happy to help.

Contact on Social media

Instagram: @vegpedaller / @apoemaday2021 / @rideformilla

Twitter: @vegpedaller / @apoemaday2021

Facebook: facebook.com/tony.frobisher

Email: frobitony1@yahoo.co.uk


Tony Frobisher is a Parent Carer Champion for Acorns Children's Hospice. His twin daughters Louisa and Milla were born 16 weeks prematurely in 2006, together with their elder triplet sister, Jewel. jewel lived for only 17 days. Louisa and Milla spent 6 months in hospital, operations on their eyes and heart (Louisa) and facing many other setbacks. Louisa is blind in one eye and partially sighted in her other, plus has mild developmental delay (learning difficulties).After a year, Milla was diagnosed with severe cerebral palsy, she was unable to walk or talk, but was a very happy, smiley girl. Acorns provided respite care for Milla until she passed away unexpectedly in 2016 aged 10.

Acorns were there for us during Milla's short life, and have been a constant presence ever since, offering grief and bereavement counselling, sibling support and a friendly, welcoming face whenever we visit Milla's memorial stone in the memorial garden at the Three Counties Hospice in Worcester. 







Thursday, 24 June 2021

Acorns Inspirations - Number 1 - BenoƮt Deakin-Woods

Acorns Inspirations


BenoƮt Deakin-Woods

Age:10

Home town: Worcester, UK

BenoĆ®t Deakin-Woods

Runner, fundraiser and a true Acorns Inspiration

        In the first of my Acorns Inspirations interviews, I was delighted to meet a truly remarkable and inspiring young man. BenoĆ®t Deakin-Woods is just like any other 10 year old boy. He loves football, is an avid Wolverhampton Wanderers fan ('The first football word I ever heard - my Dad grew up there'), loves to play football too (a creative goal scorer and provider of many assists), but also happy exercising his thumbs on video games. 

    But BenoĆ®t  is not just like any other 10 year old. BenoĆ®t is someone with an incredible drive, energy and a passion to do good. To help others, to try to improve the lives of children who are not as fortunate, those children who have life limiting conditions, severe disabilities and illnesses. The children BenoĆ®t  learnt about from his Mum and Dad when they drove past Acorns for the Three Counties in Worcester. Upon learning about Acorns and the incredible work they do, BenoĆ®t  decided He wanted to help. He wanted to make a difference. And he did just that.

    In March 2021, BenoĆ®t decided to lace up his trainers and run to raise money for Acorns. Not just one run. But during the month of March BenoĆ®t, accompanied by his Dad, completed 40 miles of running. A quite incredible effort by someone of his age. He set out to raise £100 for Acorns Children's Hospice. But his exploits caught the imagination of the Acorns community and beyond. The donations poured in and are currently at £1,205. Adding Gift Aid takes the total to almost £1,600. On the final day of the challenge, BenoĆ®t was dumbstruck as his Dad played a video message of congratulations from Wolverhampton Wanderers and England defender, Conor Coady.

***

    I met BenoĆ®t and his family, Dad Simon, Mum Alexandre and his 5 year old sister AnaĆ© at Worcester Woods Countrysde Centre on a beautifully warm summer's afternoon. We spent a pleasant 40 minutes walking through the woods, with AnaĆ© racing ahead, pointing out squirrels and explaining the big hole in the base of a tree was where the badger lived. We took a few photos, BenoĆ®t proving he was much quicker than my camera...We chatted all things running and cycling and fundraising, enjoying the strange experience of actually meeting someone socially outside for a walk - something so sorely missed this last year or more. While AnaĆ© and her Mum went off to the children's play area, I sat down with BenoĆ®t and his Dad for an interview.

Speedy Gonzalez, BenoĆ®t Deakin-Woods

L-R Simon Deakin-Woods, BenoĆ®t Deakin-Woods, Tony Frobisher



The following is a transcript of the interview.

(B) BenoĆ®t (T) Tony

(T) So, BenoĆ®t , why did you want to get involved and fundraise for Acorn's Children's Hospice?

(B) I realised how blessed I am to have what I have. And I realised that some children don’t have what I have and I just thought that I wanted to feel compassionate for them ... I thought I wanted to do something for them so I decided I would fundraise and try to do something so they could get more things

(T)  How did you hear about Acorns?

(B) Well it’s just... you know when you drive past it and my Mum and Dad would say oh look there’s Acorns, you know you just kind of saw it

(T) So you were curious as to what it was and what they did there?

(B) Yes

(T) Can you tell me a little bit about the fundraising event you did and how you came up with the ideas and do you know how much money you’ve raised so far?

(B) Well, my Dad inspired me because he did a run for Bone Cancer Research Trust and also I've got a friend called Manny and he does loads of things for charity and I kind of thought I should do something…I thought I’ll do a run…because on my Dad’s last runs I accompanied him on some of them. I decided if I fundraised for Acorns I would do a run and try and get to 40 miles in March

 (T) Why 40 miles why not 5 miles or 10 miles?

 (B) I wanted to push myself…I wanted to push myself to the limit

 (T) Have you got an idea how much money you’ve raised?

(B) The last I heard I’d raised about £1,000 (Ed. Actually currently at £1,205) + £160 gift aid)

(T) What was the most interesting or satisfying part of the fundraising and the challenge? What did you enjoy most?

(B) Er, I love the running part but I also loved when I finished it – I loved to think about the looks on the children’s faces, when they realised they’ll get something and I thought that would be a really brilliant thing

(T) Was there anything difficult or frustrating you found about it?

(B) Well. Of course you get really tired, but I thought why should I feel frustrated or angry when all of this hard work and determination is going towards children with disabilities being really happy.

(T) Did you run every day in March or every other day?

(B) I’d have a break day. It was kind of 3 days a week, 4 days a week

(T) And how long did you run for, either miles or time?

(B) At first I just started off running 1 mile, but it got higher and higher and gradually I got my highest mileage, which was I think was 6.5 miles

(T) Thinking about the challenge what did you enjoy most - was it planning the challenge, raising the money, doing the challenge or that feeling after, when you can relax, it’s a job well done?

(B) I think..the running…because when I was doing it I could think about what I was doing and how it would help people.

(T) Are you thinking of any more fundraising challenges or events. If so, what?

(B) Well, I’d quite like to do another running one and I’m looking towards getting a bike, so as it’s a bike I might be able to a riding challenge, so I’d like to do 100 miles in a month.

 (T) Is there a challenge you’d like to do? …If you had the choice of doing any challenge, maybe now or when you are a bit older?

(B) To be honest, I’d quite like to skydive.

At this point I asked Simon whether he was aware of this...No, he wasn't!)

(T) Who inspires, motivates and encourages you to keep going and who makes a difference to you when things get a bit tough?

 (B) I think the first one is my Mum, she helped plan it all and she  helped me think what I could do and second one probably my Dad because he’s the one who always accompanies me on my runs. He always pushed me to my limit and was always kind for what I was doing.

(T) And were there times when during the longer runs you thought, 'oh this is quite hard'…you know, maybe you were quite tired after a day at school or the weather wasn’t so good?

(B) Always! There’s always that point when you are trying to challenge yourself and you feel like, why do I do this…but when you end it, you suddenly realise why.

(T) What’s your message to other people who would like to get involved in fundraising but haven’t done so, for any number of reasons?

(B) Er, I think, find what suits them best…what kind of sport they prefer…it could be running swimming cycling stuff like that and er

 (T) Or it could be something like baking couldn't it or er, knitting

(B) But er, once they’ve done that, just persevere, keep going and try to find your comfort in doing the challenge

(T) Do what you know, what you enjoy

(T) BenoĆ®t you are making and have made a huge difference to so many children and their families, you are an inspiration to everybody, so we would like on behalf of Acorns to thank you for all that you’ve done, but who would you like to say thank you to?

(B) I would like to say thank you to all of the Acorns workers, because they are the ones that keep these children, er you know comforted and they help them and make friends with them throughout their time, they have done a lot of things that have helped other children and I think they deserve the credit most.


 

Following the main interview questions we did a Quick Fire round of questions, to get to know BenoĆ®t a little more.....

 

  • Hobbies and Interests – Playing football (up front), video games
  • Which football team do you support? - Wolverhampton Wanderers, I've been to Molineux many times
  • Food / Dish – Pizza Pasta / Salted caramel ice cream
  • Music – I like rock music – Dire Straits, I don’t really listen to the ones that are the latest kind of bands , I usually listen to the ones that aren’t bands anymore like Michael Jackson or Elvis Presley
  • Holiday or somewhere you’d like to go – I’d like to visit my cousins in Korea, my uncle is in the US Airforce.
  • Favourite place in the UK? No answer...but we probably settled on Molineux
  • Who would you most like to meet for a cup of tea and a slice of cake? Cristiano Ronaldo
  • Favourite book, film, TV programme– James Bond, Goldeneye
  • Running, walking, cycling, swimming or something else? – cycling, I like it energetic, like to be on wheels!
  • What do your friends think about your fundraising?  They were happy, I showed them the videos and Connor Coady and they clapped me on my back.


    So, BenoĆ®t Thank you so much for your time and for talking to me about your amazing support and fundraising for Acorns Children's Hospice. It is people like you who are the lifeblood of Acorns. Without your incredible fundraising, Acorns would not be able to continue as it does, helping so many life limited children and their families across the West Midlands.

***

    


    I wish BenoĆ®t every success for his next challenge. And if we had more people like BenoĆ®t in the world, it would be a much kinder, better place. A selfless, generous, kind and very enthusiastic young man who is making an incredible difference to the quality of life for life limited children and their families across the West Midlands, who are reliant on Acorns Children's Hospice.


Tony Frobisher

Parent Carer Champion

Acorns Children's Hospice







                           
To donate to BenoĆ®t's Justgiving page





To learn more about Acorns Children's Hospice:

Acorns Inspirations - The New Blog

 



Acorns Inspirations

A new blog by 

Tony Frobisher

Parent Carer Champion
Acorns Children's Hospice

Welcome to Acorns Inspirations.

In August 2020, I was delighted to be asked to become a Parent Carer Champion for  Acorns Children's Hospice, a role I have thoroughly enjoyed, supporting and encouraging fundraisers for a wonderful charity and helping promote the incredible work Acorns does for life limited children and their families across the West Midlands.


Our Story 

I am an Acorns father. My daughter Milla went to Acorns for the Three Counties in Worcester where we live. Milla was born together with her triplet sister Jewel and Louisa, in April 2006. They were born 16 weeks prematurely. Sadly, Jewel did not live long and passed away after 17 days. Milla and Louisa spent 6 months in hospital, both had operations on their eyes and Louisa had a hole in her heart repaired. They had numerous setbacks, but eventually came home, on oxygen, in October 2006.

After a year or so Milla was diagnosed with severe cerebral palsy. She was unable to walk or talk and required feeding through a gastrostomy or stomach tube. However, she smiled constantly and her laugh filled the room. Her twin sister Louisa is blind in one eye, partially sighted in her other and has global developmental delay and attends a wonderful Special Needs Secondary School, Regency high School in Worcester.

Acorns gave my wife and I the chance for a break from the constant 24 hour a day care for Milla and Louisa. Broken sleep, illness, feeding regimes and medicines - all took its toll on our physical, mental and emotional well being. Milla and Louisa initially spent respite stays at the Three Counties Hospice, and eventually only Milla required respire. 

To see the happiness of all the children in Acorns, to see Milla smiling and relaxed, being so well cared for by the amazing dedicated staff and volunteers was very important to us. To know she was safe, but happy, cared for and being treated not as a patient, but as a child - having fun, in the sensory room, music room, hydrotherapy pool etc. 

In 2016, while we were visiting my wife's family in Indonesia, Milla became very ill very quickly. Within three days she passed away from a sepsis infection.  Losing Milla was so unexpected and sudden, our world crashed around us. Returning with Louisa and an empty wheelchair to our home in the UK was extremely traumatic. Milla was buried alongside her Indonesia grandfather.

But Acorns were one of the first to reach out to us. They offered us bereavement counselling and sibling counselling for Louisa. They were there to support us every step of the way. They engraved a beautiful memory stone for Milla which is in the memorial garden at the hospice. We attended a dignified and touching memorial day to remember the children who had sadly passed away during that year. Acorns went above and beyond. Even small things like offering my wife a massage at the hospice made our loss, our grief more bearable. To know there were and still are people that care, even though Milla was no longer with us. 

Even before we lost Milla, I had been fundraising for various charities that supported Milla and us. For Acorns, we ran 1 kilometre during the Acorns Triple Run in 2014, pushing Milla around the course in her wheelchair. She loved the event, as did Louisa and we raised over £1,000. I then took part in long distance cycle challenges (Worcester-Bath-Worcester, 207 miles in 2 days), as well as walking 10,000 steps a day in July 2020 and March 2021. In April 2020 I sang and played guitar live on the internet for 12 hours. Louisa has done two events and raised over £3,000 by running 2 miles around Worcester Racecourse (she was unable to walk until she was more than 3 years old and her sight issues cause her balance and confidence problems).  She then climbed to the top of Worcestershire Beacon, the highest point of the Malvern Hills. A total of 4 miles walking, the furthest she had ever walked. Together we have raised over £7,000 for Acorns. 

Milla


 

 

Milla's Memorial Stone,

Acorns for the Three Counties, Worcester

 

 

Louisa during her 2 fundraising challenges




Acorns Inspirations


Inspiration is an often used and sometimes overused word. What is inspiration? For me, it is leading by doing. Providing an example for others to follow. Creating the enthusiasm in others to be better people themselves. Whether that is by challenging themselves, overcoming adversity or helping others less fortunate than themselves. 

I want to shine a light on the incredible fundraisers who do so much to support Acorns Children's Hospice. These are the true inspirations. people who willingly take on fundraising challenges, from running marathons, cycling vast distances, walking hundreds and hundreds of miles, organising bake and cake sales, coffee mornings, jumping out of planes, walking over hot coals, and any number of wonderful and sometimes very bizarre challenges.

Over the coming months I will be meeting some of these wonderful , unsung heroes, without whom, Acorns would not be able to continue to provide the service they do to life limited children and their families across the West Midlands.

I'll be joining these fundraisers for walks, jogs and cycles ride, sampling their cakes, seeing their fundraising for myself and then sitting down over a cup of tea and a slice of cake for an interview. An interview which I hope will give you an insight as to the reasons why these selfless people give up their time to fundraise for Acorns. 

Head to the next post for the first of my Acorns Inspirations interviews. A truly remarkable young man who is an example to us all, no matter how young or old.

Please comment and share andif you would like to get in touch, you can email me at

frobicycles@gmail.com

Best wishes, 

Tony Frobisher 

Parent Carer Champion

Acorns Children's Hospice

Worcester, UK, June 2021 

 

 

A walk and a smile along the canal

Wednesday, 15 June 2016

Sleepless. A blog from an exhausted father

4:47am.....
As it has been at 2am 3am...
Awake. Tired but unable to sleep. Shattered but unable to rest. Another night with little if any sleep.
Insomnia? No. Far from it.
Worry? Yes, but not that which would keep you awake all night.

Disability.

My daughter Milla. Pulling another all nighter.

Since being born 16 weeks premature and subsequently developing severe cerebral palsy, Milla has seldom slept anywhere near a 'normal' nightly routine.

Her condition causes sporadic sleep patterns and a lack of regulation of the sleep hormone melatonin. She may sleep at 8pm...but this sleep is induced by her final feed of the day. A complete nutritional supply of formula milk delivered by a pump and tube directly into her stomach. Milla can't chew or swallow without the serious risk of aspirating into her lungs.

Asleep at 8. Sounds great. But it's sadly not. Her sleep is conducted in her home wheelchair or on our laps. Take her to bed and feed her there people suggest. We can't. Milla has gastric reflux; a condition where the stomach contents are returned up the oesophagus and results in gagging or vomiting. You can not feed her lying down.

So you sit night after night holding her while she ingests her feed and goes to sleep. Then the spasms kick in. She kicks hard, rhythmically against your shins. Her head jerks suddenly. Her back arches in a banana shape as the cerebral palsy painfully contracts muscles. Electrical messages from her brain arrive in a confused state in her muscles.
But eventually this passes and she settles.

It's now 11...11:30...12am

3 maybe 4 hours of sleep. You are yourself feeling exhausted and in need of rest. The cumulative effect of night after night of disturbed poor quality sleep taking its toll.
Transferring Milla to her bed in her room is risky. On a good night you'll manage the transfer without disturbing her. She stays asleep and you can get your head down. Until maybe 5 when she will wake..sometimes earlier. Sometimes 6...which is rare but welcome. You manage 6 hours sleep which feels like a lie in, a luxury. Forget that the ideal is 8 hours....

On other nights the movement triggers Milla to wake. And that's it. 1am 2am 3am 4am....Milla is awake.
Leave her then....she'll settle.

You can't. She cries. Leave her like with other children.....no. She bucks and kicks, spasms and contorts herself and becomes so distressed she can vomit in her bed.

Ah...the times my wife and I have had to strip sheets at 2am covered in milky vomit. Had to clean Milla up. Even bath her on occasion in the middle of the night.

Other nights the only way to settle her is to move her to our bed. She is no longer a small toddler. Milla is 10. She os getting bigger. She will kick and wriggle and to sleep 3 in the bed is impractical and uncomfortable. There isn't room. And I can't sleep while Milla's cerebral palsy results in her punching, kicking and scratching me. I have a scar on my forehead from making the mistake of falling asleep but letting go of Milla's hand. Which jerked violently in a spasm and gauged a Harry Potter type wound in my skin.

So it's off to the sofa with a sleeping bag for me while my wife stays with Milla. I need to try to sleep in order to be up at 6ish for the school routine...meaning often my wife is up all night and only gets to sleep around 5am too.

5:16 am

Milla has now gone to sleep. After a night of fighting sleep, drifting off for a minute or two then waking and just not settling, sleep has come.

But what to do. I need to get her ready for school around 6:30am. A full dose of medicines, asthma inhalers, milk feed...getting her changed...it takes time. It seems cruel to wake her. But send her to school and we can get a little rest. Leave her to sleep...or wake her. She will go to sleep in her class and catch up there. What would you do?

And what of the effect on us. 10 years of broken sleep. Disturbed nights. Exhaustion.
It's become our 'normal'. You get used to it. It  doesn't get easier, but you learn to manage your life around constant sleep deprivation. You cope because you have to. You do what you have to because no one else will. You are the parents. It is your responsibility.

Work? Work was an escape. A break. Work was the rock...the solid ground I needed. The foundation for everything. A way to socialise and do something productive and useful. To feel valued and included in society.

But work became more and more difficult. I was a teacher of English. I started out when my children were born on a full time contract. I managed, I don't know how, to teach full time and care for Milla and her sister Louisa for 2 years. Then I went part time. I coped. I worked hard and maintained my professionalism in the class. I enjoyed my work, my colleagues, my school, the students.
But work began to suffer as I got more and more tired. I was heading for burnout. Exhausted, I still managed to teach. The professional head went on. But the cracks were appearing.
So redundancy in February this year was a mixed blessing. Sad to leave colleagues and a job I enjoyed and a school I had been at for 13 years. But free of that burden of responsibility to the job. Free to focus on caring for Milla and Louisa. To try to recover my energy and health.

To an extent I have done this. Yet the constant sleep issues Milla has impacts us all constantly.
Irritable, grumpy, moody, lethargic, sluggish, clumsy, forgetful....that's me. That's tiredness.

So at 5:35am I am now going to get up. If I fall asleep now I won't be up to get Louisa ready for school. 2 hours sleep tonight.

Some people party hard and rise early and go off to work bleary eyed. Burning the candle at both ends by choice.
We have no choice. The candles burns very short. No social life. Just a life of caring, coping, managing and trying to do the best we can under very difficult circumstances.

I would say good night.....but it is now morning. Another night and sleep has passed us by. A new day has begun and I for one can not sleep and miss it.