All posts by sarah

Promises and Paignton Zoo

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The last promise I couldn’t keep was in October. Toby knew I was unwell that morning and I promised him I would not go into hospital again – of course I ended up having a two weeks stay at Torbay Hospital due to another disabling relapse; but in Toby’s eyes, his mummy had lied and he struggled so much in those weeks. I told myself to never promise like that again…

Mothers Day 2016 and I have done it again, I promised the boys I would take them to the zoo and we would have a lovely picnic, we would stop at every play place for a few minutes and they could choose an ice cream as a treat. Two days ago my left arm became all but useless, my speech is horrible and I seemed to be slipping once more into another relapse. The difference is, I bloody well will not let them down and I will get to the zoo and buy my boys an ice cream.

We have been members at Paignton Zoo for over 6 years now, and we love going, it has something for everyone, I love the Gibbons and the Ape House, the boys however bypass most animals in seconds, they may take a fact or two on board, but really they just want to whizz down the curly slide (they are very excited about the Swiss Family Robinson style tree top park that should be open for the Easter Holidays).   So when our new normal began on 1st September, I remember crying about never being able to go to the Giraffes house or maybe never the zoo after so many years of pushing buggies up hills to see gentle giants or being able to find the infamous red pandas. It is amusing now I guess that I was so focused on this when there were so many other more pressing problems, like being able to move my arms!!

This morning, I was woken up by my two chimps who covered the bed in a host of colourful homemade love filled cards for Mothers Day. We ate chocolate in bed followed by breakfast on the sofa whilst watching Match of the Day.. then we headed for the zoo.  I can barely use my left arm today, my left leg feels like the weight of a fallen oak tree and my speech makes me sound like I added far too much brandy to my coffee, but, I had to get to our promised place.

We arrived at the zoo and due to the wonderful service they provide, those first thoughts all those months ago were put to rest and for a small fee I hired one of their many sturdy mobility scooters. There are very few places you cannot access using a scooter and I do giggle when the wibbly wobbly bridge in the lemur enclosure is mentioned as an out of bounds area. But you have full access to pretty much everything, the paths are all in good condition, there are a number of accessible toilets and the staff are second to none.

Today, I got to choose where we started (Giraffes via the bats snakes red river hogs and camels to name but a few)   and worked our way around. All the giraffes were out, the black rhinos were strolling around their enclosure and the silverback put on a great show. The tigers prowled and the lions roared. It felt like today they were putting on a show just for us and at my favourite spot over looking the elephant and giraffe enclosure, we all ate ice creams.

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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.

HELP!

Help!

#1 Infusion – 8th December 2015

I know currently all I do is ask for help but this is the most important ask of all. There are two parts to this so I will just get on with it.

Part One of Help!

So this infusion, there are side effects that include scary deadly brain virus’ and I am feeling a tad unlucky at the moment so really rather worried about it. Let’s just say I get it and get an early exit, I ask that as many of you as possible could do the following for me.

Tell my boys at every possible opportunity how amazing they are, how beautiful they are, how brave they are. Please tell them that they were my absolute world, that I loved them more than words that every part of their body I knew, every cry I understood and that every day I felt unbelievable love that I honestly never thought possible and that just grew and grew every minute.

Will you help them to continue to grow into kind caring young men with compassion for others no matter where they are from, what language they speak or what colour skin they have. Help them to understand how important kindness, equality, love and freedom are.

Help them to see that Mummy will always be in their hearts, wherever they go and whatever they do and that from afar I will continue to burst with pride at how they choose their paths in life.

Tell them at every opportunity that I love them as big as the world.

 

Part Two of Help!

I am obviously hoping that the two years of infusions will go smoothly and that this bloody awful unpredictable stupid disease will go into a lifelong remittance, in which case let’s just keep this to ourselves and not mention it until it is necessary. No need to comment and tell me it will be alright just please acknowledge and shelve the information and action if necessary!

Saying thank you to you all just doesn’t seem enough after everything people have done for me the last few months, but please know that your friendship has meant the world to us and the emails, comments, meals, visits, cards, gifts, haircuts, looking after the boys and kind thoughts have made us be as positive as we have been. Thank you x (but please lets never talk about this!!)hospital1 boys 12241521_10153332499728412_7212632688510971443_n

 

 

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

Devon Guild of Craftsmen

With a fabulous friend and her side kick (Little Miss) we headed out with my wheels to the Devon Guild of Craftsmen.  This is a beautiful contemporary craft centre which supports local business and local craftsmen, the set up is beautiful and even though many items are beyond my budget I could still appreciate the quality and beauty – I really loved the glass tiles and some gorgeous cushions and throws.  But what was also great was that they had a large selections of very affordable items that were beautiful, well sourced and within a pocket money budget (as little as £2).  There were some beautiful Christmas decorations and my friend brought me a gorgeous teal papier mache bird that my Son has named Rose (these were a very reasonable £3)!

I will back track slightly and talk about the accessibility which was, for an old building rather good.  There was a disabled access and a spacious court yard the second door opened easily and a very kind chap helped me in.  Apart from one stand everything was easy to manoeuvre around and after my friend purchasing some of the beautiful decorations we headed for the lift.  It was a tight squeeze but more than adequate and the tea rooms were spacious and again there was easily enough space for me to just wheel in and sit at the table.  The coffee was great quality and the cakes whilst I declined on this occasion looked AMAZING, Little Miss (side kick) had a rather scrummy looking hot chocolate.  There is a kids corner stocked with some toys and colouring, enough to easily amuse whilst you finish your hot drinks.

It was a really lovely visit, no catastrophes where I couldn’t get around and even with the tearoom upstairs it was very accessible.  I loved the items for sale, the staff were lovely and it was a lovely relaxed environment.  We all had a lovely lovely time.

 

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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….

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Summer of Science – Rubbery Egg!

Really Simple and the boys loved it.

You will need:

An Egg (or two!)

Vinegar

Container

 Put an egg in a container and put vinegar on it – leave for three days – Ta Da – Rubbery Egg!

The boys learnt about things dissolving and thought it was magic – we did this experiment twice.

Dissolve – Disappear into water/liquid

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My Little Miss Sunshine

 

 

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The 1st of December 2014 was the most amazing day, the day that changed my life really (yes I know it is dramatic, but really it did).

I adore my brother, he is the kindest most loyal person you will meet, he is a fair few years younger than me and whilst initially having a baby brother was quite frankly the worst thing in the world (to a 7 year old) it wasn’t long before this overwhelming want to protect him took over and this pretty much lasted until 1st December 2014!

In June I received the phone call to say that he was going to be a daddy and I was so happy for him and his lovely girl friend, he adored her and son from a previous relationship and already felt like a father figure but this was the real deal and whilst I couldn’t believe that my baby brother was going to be a daddy – it was just perfect.

The 12 week scan came back as all normal and low risk, but the 20 week scan was different. They were sent to Guys and St Thomas because of possible heart issues, my brother rang with a quiver in his voice saying that if this ‘thing’ is not there then the baby will not be compatible with life…. If I could have just wrapped them up in cotton wool and taken away the pain I would have but there was nothing I could do to help. A few days later and the scan was ok but the pregnancy remained difficult.

So roll on a few months and the waters break, I am on tender hooks and cannot wait to hear if I have a new niece or nephew and that my baby bro is a daddy.

I get the call in the small hours of 1st December, you have a beautiful baby niece and I am a daddy. She is very quiet but beautiful – I just knew that something wasn’t quite right, his voice while filled with elation had an edge. Not long after, another call, Abigail is not responding and they think she may have Downs Syndrome. Can you call Mum, Dad and Lisa and tell them.

I cannot even put into words how I wanted to change everything in that moment, I didn’t know what to do, I think I said something like, well I adore her already because she is part of you but my heart was breaking.

Then came all the other tests to confirm, is she deaf, does she have sight, will she be able to move – this wonderful little family had everything ripped apart, I could see they were trying to be brave, trying to put on a positive front but I knew they were breaking inside. It was such a shock, we knew nothing about Downs Syndrome we didn’t have a prognosis and every step of the way seemed to be worst case scenario. I cannot imagine how they coped, I cannot imagine how they must of felt, and I cannot put into words how helpless we all felt.

Fast forward a few months and whilst my little Miss Sunshine does have many hurdles to overcome and my brothers house is becoming more full of contraptions by the day to help little Miss, this little Lady has astounded me (us) with her determination and as with my other Nieces and Nephews I simply adore her, I am the proudest Auntie in the world.

Abigail Grace is pure to her very core. She is Happiness. Always smilin, her smile is contagious and she just makes me realise how lucky we are to have her in our lives.

A few months ago, honestly, I would have whipped that extra chromosome away and, I asked my brother if he could would he too? His answer was yes, absolutely, he wanted the easiest path for his beautiful daughter and in those first few months of accepting, it was a quick and totally understandable answer.

Nearly 9 months on and I asked the same question again, if you could would you take that extra chromosome away and the answer was very different.

“If taking the extra chromosome away from Abigail would stop a premature death and give her better health then yes I would, but if it would change her, her personality, her ways or her amazing soul in any way then I absolutely would not”.

Bro, I have gone from wanting to protect you, to putting you on the highest pedestal. I always thought I would be the one to advise you but it is you I look up to now. I cannot tell you how proud I am of you. I could spend hours writing this but it wouldn’t say eloquently enough what I actually feel.

I love you and your little family so much, your first born is my light when things get a little murky between my ears, she makes me happy just thinking about her and seeing you with your daughter makes me melt. Love you Bro x 50,000,001 x + 31 add another 30 (something I have said to my brother from childhood x)