Category Archives: The Community

Mothers Day 2016

Mothers Day is a difficult day for many. Whether you have lost your mum, lost a child or struggling to become a Mummy along many other situations – like other key dates through out the year this day can be damn tricky.

For me it is an emotional rollercoaster of a day. I can’t help but bring out the box of memories from our angel babies and wish I could just hold them once, give them a cuddle just once. But then after the heartache our boys came bounding into our lives and I was able to hold, cuddle and love them with every ounce of me.

This year we are on the fastest rollercoaster of emotions because all of the above is still true but this year is so so different and I don’t know whether to cry tears of joy because of what I am so grateful for or to scream and shout and lash out about what has been taken away from us in the last six months. How much our lives have changed and how the guilt of knowing I am the cause of this change in our lives is becoming increasingly difficult to bear.

I am not sure how to turn this all into something that will make us stronger, but I will find a way.

In the meantime on Sunday, I will celebrate with my boys, enjoy the zoo, spoil them rotten, have ice creams and hug them as many times as I can and then when they are tucked up in bed open a bottle of wine, most probably drain it … and reflect on the tricky stuff.

Is this proof that Good outweighs the Bad.. A letter of thanks x

To you all,

This is to prove that with all the awfulness in the world, good still far outweighs the bad. For every baddy there were more good hearted kind people trying to help (how I explained the world news to my boys). This is also the only way I know to say thank you to some truly amazing people.

The 1st of September when in the blink of an eye the lives of my family changed and we had to come to terms with a very different normal (I won’t go into details but you can read it in my blog www.mummytutu.co.uk) I never expected what happened next. In my first two weeks in hospital my friends are visiting me, calling me texting me, telling me it will be alright because they will help, in fact they promise they will do whatever they can to help my family.  I think we were all a bit shocked with what was happening but those first few days of support we will never forget.

Then at home where my two boys are anxious, missing their mummy and really not knowing what is going on and it is left to their Daddy to figure it all out, the help from my dear friends continues. Meals, a beautiful rose, childcare, offers of help.. honestly our cupboards have never been so full.. a dear friend pops in with her mum to clean the house, the washing is being done the ironing is being sorted, I mean really phenomenal stuff. The things that were within their control they did without question.

So I make it home and every day I have company, lunch, tea, freezer meals, cakes, a cup of coffee a mug of tea. I have friends on the way to work running in with an evening meal and quick cuppa and a hug. My friend (and hairdresser) popped in every week to do my hair, just to make me feel better, and it really did!  Then physio starts so I post lists of dates as I am unable to drive and all of them are covered many times over and I get to the neuro physio team without a hitch. Another relapse follows another two weeks in hospital and again you all rallied around to help.

And as a family whilst we struggle to come to terms with what has happened are totally blown away by wonderful friends.   We felt nothing other than cushioned with love and support. Many commented how positive I am and what an inspiration I am but the only reason I can be positive is because of you all, so actually you are all my inspiration.

Now let’s talk about the NHS – we won’t go into why this wasn’t spotted sooner as I cannot change what has happened but I can say that my new GP surgery is outstanding, home visits, help, phone calls for catch ups but more than that the receptionist on the end of the phone has a warm manner and the Dr’s bedside manner puts me immediately at ease. In the first 8 weeks I spent 4 in hospital where my care from the staff was simply outstanding both at Torbay and Teignmouth Hospital.

I am under the care of a neurologist an amazing man who speaks to me on a level, who tells it as it is and who I know is doing the best for me and the Nurse who within what seems like seconds of a relapse is right there, holding my hand, passing me a tissue and always nearby when I have a wobble. J and J you are awesome and whilst I have no control over this disease and the rate in which it is attacking my brain I know without question that you are doing the best for me.

Now let’s talk about my neuro-physio who I call evil but only because she makes me really work!!! I have seen L numerous times a week, she has arranged for all the adaptations to make my home easier and has not stopped trying with different avenues to get my damn left leg working again. Both L and the team I cannot thank enough for your constant support.

There are two little men who are my world, who are sensitive kind little boys who do not deserve what has just happened to us and the guilt I have for hurting their hearts when it is the very opposite I strive to do, eats away at me every day – well actually mainly at night when sleep evades me and muscle spasms are at their worst. But, they too have experienced this blanket of love, kindness and help. Big Foots totally incredible school, Skinny legs fabulous pre school where the staff at both exceed their job description every minute of the day supporting my boys. Our very amazing child minder – the boys absolutely love you and your family and you in their lives make my guilt ease a little.

So at an awful time in the world where innocent people are losing their lives so needlessly and people are questioning humanity… I have a little bit of proof that there are good people too and whatever bad stuff happens there will always be good.

And just one more time to all of you who have helped in the last twelve weeks I simply cannot thank you enough and I hope in some way I can repay your kindness.

With grateful thanks to you all,

Sarah x

How do I explain this all to my boys?

Big Foot and Skinny Legs keep asking when my legs will get better and we are now at a point where we need to accept that things will not be ‘normal’ and we need to make our new normal, so we need to start explaining Multiple Sclerosis to them.

I am not being negative, actually it is more that we are being realistic.  Treatment options have changed again as this is more aggressive than we first thought and there have been changes to my MRI even in a short space of time with two sessions of IV steroids.  I start Tysabri soon, and infusion every four weeks for 2 years and we are really hoping this will bring some relief to this almost constant relapse.

So I have spent weeks writing my own version of what is provided for children.  It is a lot less words, a few more pictures and it is personal to us.  I would love your thoughts on it x

Mummies Funnies WEB

A letter to Multiple Sclerosis

Dear Multiple Sclerosis,

I have bided my time but it has now come to the point where I have no option but to complain. When you first arrived I have to say, I wasn’t best impressed, quite frankly you were a pain and I had to get my head around the fact that you were not going to go away. One thing that helped with this was that whilst I was in the midst of a horrible relapse I was comforted by the fact that there would be a remittance also – hence the name Relapsing Remitting Multiple Sclerosis.

Can you imagine the disappointment and upset that you are causing by quite frankly not living up to your name. Every morning I wake hoping the remittance is going to start only to realise that still I cannot brush my own hair or teeth.

I think I have been patient enough, I think my family have put up with enough and I would like you to take this letter as a warning that if remittance is not forthcoming soon I may very well have to speak to other agencies about this as legally you have a responsibility under the trades description act, trading standards and I am sure other acts to provide the other side of this disease. If this does not happen and only 50% of what you stated remains then I will have no option but to take this matter further.

In anticipation of you help at your very earliest convenience,

 

Sarah Landfear

cc My Brain

My central Nervous system

In the blink of an eye – everything changes

I feel like I have woken up in someone else’s life sometimes. I am still very much coming to terms with the events of 1st September 2015 and slowly learning and figuring out ways to make the best of a pretty shite situation.

Today was not a good day, this morning sat on the sofa by myself and I felt for the first time really, that feeling like this every day for the next however many years just wasn’t a good option – don’t worry, I am not going to do anything stupid, well I will do lots of stupid things but not that …… but this every day fills me with dread. Pain has blighted me for years, the last year alone, sometimes, putting one foot in front of the other has been so difficult, but I just thought I was a bit of a wimp and just carried on.

Finding out that there are these nine little pockets of inflammation between my ears was scary, losing the use of my left side was terrifying losing my speech was the most frustrating thing to have happened but actually getting the diagnosis was a relief. Likely to date back many years because of the amount of lesions and years of tingling, numbness and weird goings on and having had every test under the sun, I have been diagnosed with Multiple Sclerosis.

Given the choice I would choose a stroke, in fact the early days they gave this as the diagnosis until more in depth mri’s were carried out. I know that sounds mad but at least I would have had a chance of the 100% recovery I was aiming for. Now things are very different and I am just grateful to wake up with moving arms (they stopped working two weeks ago during another relapse) so my boys continue to get our precious mummy hugs (and I get to wipe my own bum again).

The worst thing about this is the guilt I feel, I have inflicted this on my family and I wonder had I had the diagnosis years earlier whether I would decided to have children as watching their pain when I cannot go and kiss them goodnight in their beds or their voices full of hurt and confusion when I am in hospital breaks my heart – this is not what I wanted for them and amongst all the positivity that I try to have, comes this ache that I have hurt my precious gifts so badly.

My next annoyance is cash, I hate it, I hate the worry it brings with it and the lack of it. I worked my socks off trying to get what we have, I sacrificed time with my family for a life of unsociable hours, took umpteen calls on big foots first birthday, had to go in on Christmas day and for what – all I have managed to achieve is massive mortgage; and finally (really did it have to take this) I see how unimportant it all was. The last two years have been flippin’ tough, I have rarely taken Tobes to school because of work and now I can’t take him at all – the effect this had on family life has been profound and at 3am when sleep is not forthcoming and muscle spasms are at their worst – I wish I had done things differently….

hospital1

 

 

Scrubbing Brushes and Tabards

I remember my Nanny and Grandfather Holliday with the most incredible amount of love. They were the most enormous influence in my life and I know my siblings and cousins are with me on this.

My Nan encouraged my love for the arts, ballet and musicals. I remember fondly watching Fred and Ginger movies and playing records on her radiogram whilst dancing around the house with pots and pans as our tuneful instruments. She loved all sports too and my brother knowledge and skill in cricket, football and golf were primarily passed on from my Nan’s love of sport too.

Her influence on my interest in politics started with basically fancying Paddy Ashdown! But her sense of fairness and community fuelled my love of the Liberal Party.

I get so caught up with my own problems that helping others is often difficult to do, but with the cut in funding, this is something we can all do to help our Communities.

Unusual for their day, my Nan was a divorcee with a child, the love story whilst in service with my Grandfather is worthy of a movie but with her second marriage came a second pregnancy and she knew her time in service must come to an end. My Nanny and Grandfather with 2 children were offered a Council house in Rivenhall and they were overjoyed and hugely grateful for the fortune of having signed a tenancy to this house.

They moved a few times, I remember Hall Rise with fondness, birthday parties and having an almost state burial march around the brick shed for igipig the guinea pig. Their house was always immaculate and I loved school holidays where I could spend a day with my Nanny on her wash day with the twin tub. The pride in their property puts us to shame really and even though I am a bit of a clean freak, Nanny and Grandfathers home was always clean, homely and always smelt of delicious baking, I am embarrassed to say I am a terrible cook so didn’t inherit this quality.

My Grandfather was the kindest person I have ever met, I remember looking up to him so much and the turnout at his funeral was a testament to the character that he was, a gentle giant, a gentleman. Their last council house was in Witham in a retirement bungalow and as always was homely; it almost cuddled you as you walked in the door. But the garden was my grandfather’s domain and was a thing of beauty. Firstly there was the peach tree, this was tended with love and care and the produce was like nothing I have tasted, no peach has tasted the same and abit like my Nan’s Christmas Pudding, we have been totally spoilt and have been unable to recreated, or even get close to how the peaches tasted and how my Nanas Christmas pudding tasted.

The front garden had 6 hydrangea bushes that were beautiful, he tended them with so much love and attention, Grandfather was very proud these and his beautiful roses and their front garden were a beautiful. I remember my Nan in a curler, hairnet and tabard scrubbing her doorstep daily, the polished Cardinal Red doorstep was a lovely welcome. They were so proud of their house and so grateful for what they had been given.

So fast forward 30 years and we are now in an age where our grass verges cannot get cut purely because the Council budget has been cut and there isn’t money in the pot to do this. I drive along, in the most amazing part of the country and I am so saddened by the decline in our verges but also in the state of our own front gardens.

So is there something we can all do? Could we start tending to what is simply on our doorstep. So if there is a grass verge that maybe was maintained but isn’t any more, can you cut it?? If there is an elderly neighbour who can no longer tend to their garden, could you help??

I have a few things I am thinking about to help my local area but really think this is something we could all do so easily even a small offer of help could make a massive difference. I understand that it is so frustrating when previously some verges had been on the agenda and included in a budget before but I also understands that our local councils are beholden to the cuts from central government, so these decisions are unlikely to be changed, therefore I am happy to suck it up and help where I can and help keep our villages beautiful, but we all need to be in it together – are you with me on this? Can you help me with this as if I am honest I have no idea where to start!! If you have any ideas how I can encourage others to join my plight please please email with information and advice. Let’s keep our Country beautiful x

 

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Your local Politicians

When you think of a Politician, what is the first thing that comes to mind, David Cameron, Nick Clegg – they might be the ones with that we see the most with the fancy titles but in your area, on your doorstep, who works for you??

Since the 2015 Elections I have been inspired by the work that goes on in our Local Community and have recently been co-opted in as a Parish Councillor and hope that I can do some things that helps the area too.  The Parish Council make decisions on behalf of the Community, they are the level of Government that are closest to the Community and from what I have seen over the last few months,  they are the people that work the hardest for you (IMO!).

The work that goes on between each Parish meeting is phenomenal and I was surprised by the duties they have.  They make all kinds of decisions on our behalf that affect the local Community, from planning, crime prevention managing open spaces and improving, delivering better services and facilities and so much more.

These are all volunteer posts and yet they may do more for you than others on a payroll.  I really hope that I can help, even if it is just a little bit.