Sunday, 27 December 2015

Eating out with food intolerances - Gló (Reykjavik)




 The stodge of the Christmas menu is now well and truly past us and I thought a little  motivation on a change in eating habits might be useful on the run up to the new year. 
It's been a while since I had an "Eating out with Food Intolerance's" post on the blog, so  today I would like to share with you one of the places we frequented quite a bit when we visited Reykjavik recently (you can see posts on our visit here and here) and encourage a few small additions or changes to our diets.  
 We tried a few restaurants during our week away, but the wait and the lack of catering for food intolerances meant we revisited Gló a number of times. 

The long days outside in the elements, exploring the sights of Iceland can make you rather hungry and when you want to eat... you want to eat.... NOW!

Tuesday, 22 December 2015

Peace



For a lot of years Heni had a bad habit of moaning when she was put to bed each night.... and she would moan for hours and hours on end. The sound she made was as if she was uncomfortable all the time and perhaps in pain ...it was definitely an unhappy noise and a noise that cut me right to the core.  As a mother, all you want is to relieve or take away the discomfort and hurt, and when nothing you do makes the slightest bit of difference and you can't help, you feel rather useless. Not only would her habit make me feel like a failure but it would totally stress me out and drive me nuts... it was sheer torture! From time to time her moaning habit returns and it often comes back at times when she is not feeling great....
From my last post you will know that Heni has been ill over the last few weeks... she IS improving but she is still not yet back to her cheerful self and previous energy levels.  In these "roller coaster dips" it brings back all the other previous dips we have been through over the years and it's not much fun to say the least! Every dip is a trying time but with the return of her moans, these last few weeks have been extra trying.

Wednesday, 16 December 2015

Heni and her roller coaster rides.



Ok.... so I've been AWOL here on the blog and haven't written anything for a number of weeks.... It's that time of year when everything gets crazy and there are far more things to do than time to do them in. Things like birthday prep for the Hungry boy and Daughter number 2, internet shopping for hours and hours to find the right gifts for everyone for Christmas....decorating the house, meeting up with friends to give out presents..... and then Heni goes and does her usual...
....she goes on the downward slippery slope and becomes ill!
 She does so love to have those extra long holidays and get a few more sneaky days off college!

She has been ill now for almost a week.... with the subtle signs of the downhill slide developing for at least a few weeks or so before that. It's the redness around her eyes and nose, the spots that develop on her face, the slightly increased tinge of blue in her lips, nose and fingers and the mischievous glint in her eye that becomes a little less sparkly that gives it away. Then the mucous develops and there are not so many smiles as usual and her energy and tolerance levels for anything and everything plummet and she has a general lack of oomph! Sometime you can catch it and nip it in the bud right there with a few extra supplements, a little longer sleep and rest, some herbal remedies and extra long cuddles. 

Sunday, 29 November 2015

HOME





I haven't got a scheduled post due out here on Henibean and so I thought that I would sit back and just write....  and  perhaps tell you a little about what's been happening this week at home. 

It's been a week of mixed emotions. 
One of the events of the week was having to say goodbye to my eldest son and daughter in law as they left home on their next adventure... a move to America! My son is half American anyhow (American dad) and so It will be a great time for them to explore his "other" country and heritage and get to know a lot of our family over there a little better. 
It was a sad time saying goodbye to them and we are sure going to miss having them live so close to us (in the apartment at the bottom of the garden!)  I know that there is Face-time and Skype these days (we talked to them 24 hours after they left!) but the saddest part for me was to see Heni hug them goodbye,  and cling on to them with her legendary "headlock" as she loved them and then let them go. 

Wednesday, 25 November 2015

Communication - Icelandic A to Ö




On a recent trip to Iceland, on our first evening in the country, I had booked a fun, light-hearted crash course on the Icelandic language in the living room of a friendly Icelander– called Asta (via I heart Reykjavik).
We turned up on her doorstep in a taxi and were welcomed in to her home to learn more about the origins of the language,  the construction and pronunciation of the alphabet and its every day uses. Throughout the evening we bombarded Asta with our questions about the vocabulary,  Icelandic culture and traditions and by the end of the night came away feeling like we had a fighting chance of being able to at least pronounce the name of the street we were staying on for our return taxi driver! A very different scenario from trying to pronounce where we wanted to go a few hours earlier! We could even be so bold as to say that we could  pronounce the famous ......


  .....that erupted in 2010!

Sunday, 22 November 2015

Sanity Space - Advent Tree - PART 4




Welcome to week four ...the final installment of our Advent Tree bauble hunt! This week we  will build up and finish the last few ornaments for our project. Today I will be sharing with you the remaining 6 scriptures and decorations for your tree that depict the many varied names and roles of Christ. Hopefully that will mean you will still have plenty of time to finish searching (or making) in good enough time to start your advent on December 1st! 
If you have been following this blog series you will know that there are 25 decorations in total ....with the last one getting opened and hung on the tree on Christmas day. Please Feel free to change the scriptures and even change the decorations to something that resonates with you and reminds you of the the real message of Christmas.  If you haven't already seen the previous posts throughout November it may be a good idea to check out WEEK 1, WEEK 2 and WEEK 3 for the rest of the scriptures and decorations after seeing days 20 - 25  in this post. 

Wednesday, 18 November 2015

Making Memories and Traditions- One off The Bucket List.......The Land of Fire and Ice


  A number of years ago I saw the thought provoking, but fun film called "The Bucket List" ....any of you seen it?  
It's about a Billionaire (Jack Nicholson) and car mechanic (Morgan Freeman) who are complete strangers, until they both end up in the same hospital room suffering terminal cancers. Both men have a desire to complete a list of things they want to see and do before they "kick the bucket" (die) and against their doctor's advice, they leave the hospital and set out on an adventure to tick off some of their bucket list items. It got me thinking about what I would like to do in my life before I kick it too!

Sunday, 15 November 2015

Sanity Space - Advent Tree - PART 3




 Welcome to week 3 of the advent tree bauble hunt! If you are new to the  blog then you may want to go check out week one and week two first to see what we are up to!   Then come back and  and join me here for  the next  6 scriptures and ornaments.....

Thursday, 12 November 2015

Eating "In" with food intolerances - The Hungry Boy's Birthday Cake




The Hungry Boy turned thirteen yesterday and he wanted to have a celebration cake made out of his favourite flavours....chocolate and mango! Yesterday morning I set a few hours aside, donned my apron and rolled up my sleeves and got stuck into having a go at making a gluten free/dairy free cake good enough to eat for his birthday. Luckily we have introduced eggs  back in to our diets every now and again and so the prospects of it turning out OK (and not falling to pieces) were hanging in my favour.
I decided to use a Mary Berry's chocolate cake recipe and change it around to accommodate our food intolerances. You can find the original recipe here.

These are the cake ingredients that I used below. 

Sunday, 8 November 2015

Sanity Space - Advent Tree - PART 2



Welcome to the second week of  Christmas bauble hunting! If you read last weeks post (Part 1)  you will know that  I originally made this little advent tree for my son some years ago.   Last week we went through the first six ornaments and scriptures depicting some of the names and attributes of Christ.  This week we are on to the next 7 .... ...so off we go...

Tuesday, 3 November 2015

Inalienable rights?


I don't know about you, but I believe that everyone should have the right to be able to breath and pee for free? Lets just say that I feel that that these are two of what should be our inalienable rights. However, unfortunately for a lot of people in our world today this is just not the case. 
I will cover the breathing part of this in a different blog post but today I wanted to talk a little  on the "other".
Above is a photo of one of the many examples of toilets that I come across. This one was taken on our Lake district trip at the beginning of the year.....public toilets with  a physical barrier and a price tag! I get frustrated that I have to pay to get through a barrier when I need to use a PUBLIC convenience... but there are many hidden physical barriers for a lot of people and even bigger prices to pay when it comes down to toileting.

Sunday, 1 November 2015

Sanity Space - Advent Tree ...PART 1


Half term is over and I have just returned from a family respite break in Iceland! It is an amazingly diverse country in more ways than one, and while we were there we experienced our first snow of the year. It made me realize that Christmas is fast approaching and is on its merry way! (I will tell you more about our adventures in Iceland in a future post....) So....as it is officially the 1st of November, I thought I would share a project with you that I did for my son a number of years back while he was serving a mission for our Church.
We had not seen him since he left almost two years previous and during the time he was away I would occasionally put together a care package (with various items that I thought he may need or like) and send it to him. On his last Christmas away, I though that I would do something a little bit different. 

Monday, 19 October 2015

Mindful Meanderings





It's the "snot and grot" season here in England  and Heni has been off college for two whole weeks recently. As usual she has been trying to get an extended half term holiday!  When everyone else gets ill, she often gets it ten times worse. Fortunately, we managed to stave off the antibiotic rounds... and she returned to college at the end of last week.  For the two weeks that she has been home it has meant that hubby and I have been back on slow down mode, taking care of her needs ..... not really knowing how things would pan out...It is always very stressful when she is ill and is not usually a very pleasant time....

It has however, been quite handy that I've had some extra "sit and do nothing time"... cuddling Heni on my knee. It has meant that over the two week period I have been able to tune in and listen to the great interviews each day on the Mindfulness Summit  hosted by Meli O'Brien (aka Mrs Mindfulness).... and just sit listening....soaking everything up.
A few days ago when Heni was feeling a little brighter,  we wrapped her up in lots of blankets and set out to get some fresh air in the woods close to where we live.  As we walked around I reflected on some of the things that I had learned.

Friday, 16 October 2015

Making Memories and Traditions - Audley End House


Hubby has been away on a business trip recently and I had a full day of respite organised on the Saturday  of the week he was gone. As usual, I decided to get out of the house and go do something with Daughter Number Two and The Hungry Boy. We love to try out new venues and seeing as we hadn't used our English Heritage cards for a least a month or two, I  decided it was time get them out, dust them off and put them to use again in making some more memories! 
We left Heni at home in the capable hands of Laura and set off on our adventures to..... Audley End house. It is about an hour and a half drive from where we live and so wouldn't have been a natural choice of places to go if Heni was coming with us....plus the fact that it would be a full day out.... long trips tend to takes their toll on her these days. Seeing as it was just the three of us we packed a quick picnic, stuffed it in a cool bag and hopped in the car and headed out...

Friday, 9 October 2015

"Ponderizing Pebbles"





Over the last weekend we listened to General conference, two full days of spiritual uplift and strengthening gained from 5 sessions (two hours each) and 35+ speakers. It sounds like a lot of time to pay attention and listen but it just whizzes by and is like  an intensive Ted Talk session but on Spiritual steroids!
 
Just like food  is important to nourish our bodies for us to have energy and strength, I always feel like I have gained spiritual nourishment and strength from listening to  the many varied subjects and wise counsel gained from the conference talks. I always come away from listening to it feeling more balanced and with a desire to do better and be better.

One of the many talks that I liked  this year was on "Ponderizing!" Never heard of it? Neither had I.  The talk was by Devin G Durrant (you can see the whole of the talk at the end of this post) and this is part of what he said:-

Tuesday, 6 October 2015

Walking with Wheelchairs - Rye Harbour Nature Reserve



Its been a little while since I did a walking with wheelchairs post so I'd like to tell you about some walks we came across during our summer holiday to Rye. Literally  a few minutes stroll from our holiday cottage In Rye Harbour was a fantastic nature reserve with miles of paths  and trails to explore....there were at lease three good circular walks  which vary in length that you can do. While we were there (and had the proximity and time) we  went out on numerous days and decided to try some of the various routes. 

Thursday, 1 October 2015

Making memories and traditions - Blooming In the Dahlia fields.




At different intervals throughout the year we tend to go on visits to the same local garden centre close to where we live.   Usually It's a tradition to go with the family just before Christmas  as it somehow seems the perfect atmosphere for Heni.... she enjoys seeing all the sparkly ornaments and  the multitude of pretty coloured fairy lights that attract her attention.  We also enjoy seeing what "theme" of decorations the garden centre  has put together to collect money for local charities....
BUT NO.... It IS still too early to be talking about Christmas for my liking.... and so I would like to tell you about our  Autumnal visit to the garden centre and their beautiful  Dahlia fields instead ; )


If you ask me, Garden centres are the perfect "sensory room" with lots of colour and movement going on as people push interestingly shaped and coloured trolleys here there and everywhere.

Friday, 25 September 2015

Decisions



When I am on form I can make good solid decisions but when I am feeling a bit low or stressed my decision making capacity reduces substantially. At these stressful times I am tempted to just not make decisions at all.... which if you think about it (and also hubby says) deciding not  to decide is a decision in and of itself! So I guess we are constantly making decision to do this or that or not do this or that ....as the case may be. 
Today I am in a "not sure what job to do first" mood... I have lots of things that I could be doing and perhaps should be doing but I am struggling to decide.....

A few days ago I came across a tweet with an article by Time magazine called "The four rituals that will make you happy according to neuroscience"  and it shed a little light on decision making and a few other things. These four ritual behaviours that we can do, will  stimulate and effect parts of our brain to create the effect of happiness.

Number one ritual was Ask a question...  The example they gave was to ask the question "What am I grateful for? ....guess what my last post was on? You got it Journalling and gratitude.....

Sunday, 20 September 2015

Journaling and Gratitude




 It was raining and miserable outside and I was feeling pretty miserable and ugh inside too.... so I sat down  a little earlier for a few minutes and  decided to get out my gratitude journal and take a peek at what I had previously written. 
I tend to go in phases at writing in my journal and the last entries I  made were around March at the beginning of this year.
It was lovely to read page after page of all of the things that I had written ..... the experiences, the things,  the acts of service and the people in my life that I am thankful for. 
I had forgotten that in January I had also started a "52 weeks of journaling" challenge with  the "365 questions" by Tami Taylor... that I had downloaded from Pinterest. 
Normally I would just write a list of ten or more things for which I am thankful for on that particular day but I thought that the question prompts may add variety to my thinking and give me a wider variety of topics and subjects to be grateful for.
I found it fun to read the answers that I had put down on paper to some of the questions.... such as.....

Wednesday, 16 September 2015

Book Review - Being Mortal (illness, medicine and what matter in the end) by ATUL GAWANDE


 I don't really know how to begin this post except with a warning to those who feel emotionally challenged with death and dying at this present time...

WARNING......you may not want to read  this book... BUT.... you probably really should.

Once again it is an unusual choice ....and a challenging choice for a "holiday" read, as the contents are  less than fickle and merely entertaining... it strikes at the heart of anyone who is watching someones decline and facing the end of their mortality AND as a consequence facing the questions and decisions that often need to be made at such a time.  In Many respects it is probably a book about those who are aging/elderly and infirm but the contents can be applied equally to anyone, anywhere at any age.

Usually as I read books I love to underline the things I want to remember and the things I find interesting  and noteworthy....IF you were to pick up my copy of this book you would find my pen marks scrawled on most of its pages! This book spoke to me on numerous levels and It resonated with my own thoughts and feelings on how I have tried to navigate through the various emotions and questions and scenarios we have faced with Heni...and will yet have to face...having lived with the prospect of her death  over such a prolonged period of time...
It also resonated  to me on a professional level (as a Physiotherapist/Naturopathic Iridologist/Health advocate) and made me shudder at the lack of dialogue and understanding that frequently occurs by medical professionals about the wishes and desires of those who they are trying to help.

Friday, 11 September 2015

What I learned from Inside Out




 It rained on  quite a few of the days we were away on holiday... and on one of the mornings we braved the weather and walked along the beach in a thunderstorm (mad I know...tell hubby that!) and got soaked to the bone! Normally we don't let weather bother us, otherwise we would never do anything, but this was HEAVY stuff and so we made alternate plans for the afternoon and decided to spend it at the cinema.
I had seen the trailer for "Inside out" and it had made it onto my list of films that I wanted to go watch. Luckily the Kino cinema in Rye was running it and so we booked some tickets and braved the weather (a second time).... and hoped we wouldn't have to sit all soaking wet throughout the film!

Some of you may have seen the film, but for those of you who know nothing about it ...



It's about a little girl called Riley who lives in Minnesota...she loves her life and when she has to move to San Francisco with her family she struggles to adapt to the changes that her new life brings.
Her emotional control centre (in the depths of her mind).... is  staffed by five key emotions (characters).  "Joy" is normally in the driving seat but is now struggling to help Riley adjust and with fellow  characters - Anger, Disgust, Fear and Sadness she tries to lead Riley through the difficult life changing events that are taking place. Joy  had always taken pride that all Riley's core memories were "golden" and joyful ..... and she worked hard to keep Riley upbeat and happy....



Thursday, 10 September 2015

Eating out with food intolerances - Webbe's at the fish cafe in RYE



On our family trip to East Sussex (south coast of England) this summer we spent one of our days looking around the gorgeous little town of Rye  which was located only a few miles away from our holiday accommodation. As we looked around we were lucky to find a place that catered for our food intolerance needs and so we celebrated Hubby's birthday meal at "Webbe's at the fish cafe". Seeing as THIS IS an "Eating out with food intolerances" post, I will tell  you more about our experience there ....but first let me give you a taste of.....pretty little Rye town.

Friday, 4 September 2015

Hydro for Heni


September is here and Autumn is truly on its way with its gradually shortening days and fresh morning air, so I wanted to reminice a little and tell you about Heni and her pool antics this summer.  
Usually, with the advent of summer, longing for blue skies, sunshine and the onset and prospect of longer days ....we usually get our hopes up and get the paddling pool out from its wintery hibernation in the shed. It's an act of faith that we WILL get some kind of summer..... no matter how short.

I don't know about you but I love water....water can be  a very healing and restorative element.... being near the sea, by a lake, river or stream or in a pool is very therapeutic...and lets face it, it's also a lot of fun and it feels great.  So, when the weather gets hot enough over here in England we like to put the paddling pool up and have some in our own back garden!

Heni also loves water... she used to do Hydrotherapy (both at school and a local hospice) but since she started doing shorter days and moved to college she no longer gets the opportunity to be in water like she used to... with that in mind  (at the beginning of the first sign of heat over here) we decided it was too long since she last had a dunk in a pool and decided to make amends.

Here is what we did.

Tuesday, 1 September 2015

Mum and Dad's respite Weekend away





Frivolous or a necessity?

Demands of providing full-time care for a child struggling with a disability or a chronic illness can be overwhelming  at times, even for the most committed of parents. Having a break away can help parents maintain their sense of self and sense of being a couple,  by giving them time to engage in  things they enjoy... like a hobby, travel, seeing friends or just resting and recouping energy. Respite breaks can  help families stay together by giving parents time to work on their relationship (outside the demands of parenthood) instead of concentrating solely on the needs of their child. I feel therefore in answer to the above question that Respite care is an "essential" for couples as it can reduce parental stress and help to keep overwhelmed couples and families together.

The Hungry boy and Daughter number 2 headed out to their girls and boys camp a few weekends  ago  and so with the above in mind and Heni being well looked after at home by Gem, we decided to make the most of the time that they were away by having a weekend respite break...just me and hubby!
The last time we had been away together was a year previous and the time before that three years previous..... so we were well overdue some time to  spend as a couple. 

Thursday, 27 August 2015

ITALY AND HOLLAND




A few weeks a go I returned from an amazing six night respite break in Italy with Daughter number 2. We flew to Verona and drove to a beautiful location on the Gardone Riviera at the side of Lake Garda.



When we arrived home and reflected on the trip... it suddenly occurred to me that I HAD BEEN to ITALY!
Now I know that may sound rather strange to some of you having just said that's where I'd just been... but  I'll explain a little more later.....

Friday, 21 August 2015

Making Memories and Traditions... At The Beach - Messages on Pebbles




I know that I haven't finished writing up the posts on Malta yet (a break we took a few months back) ... but I wanted to tell you about this fun day that we experienced about a week ago when we were on holiday as a family in Rye.


One of the days we took Heni to Winchelsea beach (close to where we were staying).
As we were trudging all the bags, chairs, cool box etc on to the beach I had my eyes down, as I usually do, looking for the perfect heart shaped rock.  All of a sudden I noticed a  number of pebbles with writing on gathered together in a group. I bent down and took a closer look and a smile crossed my face…. There was another kindred spirit on the beach who likes to do  random fun stuff like we do! (In the past we have been known to make little painted prayer rocks and paper weights for the kids and other friends... and last year when we were on holiday in Cornwall...we had also done some drawing and writing on pebbles and left them behind for someone to find. It was a nice reminder for me of how much fun we had  that day and how the time seemed to whiz by as we churned the pebbles out of the "beach factory" and dotted them in strategic places everywhere…


We quickly set up camp....                                                                        

Sunday, 16 August 2015

Sanity Space - In the kitchen????


 After having cooked for the family for well over twenty years I've become a little tired with preparing and making meals. The added complication of food intolerance has magnified that feeling to the point that  the kitchen is currently NOT my favourite place!

However, given a munchy attack....the space to experiment (with no one else around) and not being under any time pressure, I quite enjoy making some mess and throwing some things together. I don't particularly like following recipes though... I'm more of a "see a picture...like it... and figure out how I can make something look like that with what I have in my kitchen cupboards" type person. I have a gluten free, egg free, dairy free board on Pinterest that I like to pin recipes  on to that I use for some inspiration. https://www.pinterest.com/jadebie/gluten-free-egg-free-dairy-free/

Friday, 14 August 2015

Eating out with food intolerances - The Cliffs Restaurant - Malta (plus a bit of sight seeing)



  I have literally just arrived home from our summer holidays, unpacked everything, put the dirty clothes in the washing machine and now I'm onto blog catch up...
I thought that I would post something from our respite break to Malta earlier in the year...It seems like forever since getting back from that trip... and I have finally got round to telling you a little bit about it! This is the first in a series of three from our break....
(Hopefully I won't take as long to write something about our most recent summer adventures!!)

During the middle of our week away we decided to take a rest from the pool and head out in the rental car to explore some more of the other side of the island.  We had heard that there was a beach called Golden Bay (one of the few sandy beaches in Malta) over to the north west of the country.  We  managed to navigate the notorious Maltese traffic and arrived at the beach in much need of a swim to cool down. The beach was nice.... but the sign for the "10 different types of jelly fish"  to watch out for put us off from taking a dip in the water..... and so we lounged around in the sun and took a  paranoid paddle or two instead!

Friday, 7 August 2015

Eating out with food intolerances - Ready made snack bags




A few weeks ago I listened to a podcast by Portland Roots media called  Stronger Everyday... the  podcast was a  "Summer survival guide"...  on how to survive the summer with happy children.  One of the hints and tips shared  on the cast that I really liked (and always have the intentions of doing but never get round to) was the suggestion  of being organised .... of planning and preparing and making snacks ahead of time so that there is always something healthy to grab on the way out the door.  I was motivated to have a go this year and so today I went shopping with daughter number two for some ingredients and we made up a bunch of snack bags together.

Thursday, 30 July 2015

Birthday project - Heni's Hanging Teepee





As you read this post I will probably be mid air on my way to Italy for a respite break with daughter number two and won't be back until the end of next week.... while I'm away I will be computerless and so this will be my last post for a week.  
Today I  thought I would leave you with a post that tells you all about a project that we completed recently for Heni's 20th birthday.  

I had seen a really fun looking hanging teepee swing on Pinterest that I really liked and thought that Heni (and the other kids) might enjoy having one.... (another cool area to hang out in the summer other than her swing). However, I didn't want to pay the extortionate megabucks that they cost and knowing that the boys are always up for a project AND we had a whole week where we had Niamh around to provide some respite... we decided to have a go at making one ourselves.

Tuesday, 28 July 2015

Thank you!






We have just got back from a weekend away and become aware of the huge amount of birthday wishes that have been made on line after the post "Incompatible with life - Happy Birthday ... 20 today!" We are astounded and moved at the wonderful comments and thoughts from so many people around the world.... people like us who have had the blessing of being parents to their Trisomy angels no matter how brief...or others who have had the fortune of knowing these special ones. We have loved receiving  all the lovely feedback and birthday wishes to Heni and to us as a family. 
We have also had some comments posted here on the blog ...but Blogger doesn't seem to be allowing me to reply in the reply boxes... so I thought I would reply to all of you here...

Sunday, 26 July 2015

Sanity space - Flower power R & R





This was written a few weeks back when we had some sunshine here in England! It's done nothing but rain for a while now... so I think a bit of flower cheer might be in order....

As I looked out of the kitchen window into the garden the other day I  noticed how long  the grass was and the weeds (that I had pulled only about a week previous) had regrown and were back in full force. It's amazing what a bit of rain and sunshine can do! Everywhere I looked had a label with "job" on it!
After my morning walk I decided to spend an hour outside and see if I could bend down and pull some of the weeds. However, with my amazingly sore muscles (after enrollment in to Regiment fitness just days previous),  I decided to leave the low weeding and concentrate on jobs waist high... one of which was pruning the rose arch as it had grown crazily wild too. 
As my mind still contemplated all the jobs that needed doing I somehow became side tracked by the roses. Instead of pruning (AKA...hacking everything to death)... as I normally do, I  found myself  carefully cutting some of the stems on the blooms that still looked good  to take indoors.....  and so a "sanity space" project began to emerge from nowhere. All of a sudden plain boring maintenance turned in to some sanity space fun. 

Wednesday, 22 July 2015

Book Review - The Element by Ken Robinson





You will never guess where I am?  OK, so I am in the sleeping bag.... on Heni's swing finishing up one of the books I picked up at the airport on my way to Malta  a while back. The first thing that grabbed my attention  about the book was the authors name....  strangely he has the same name as my dad! After that I was intrigued by the "how finding your passions changes everything" bit on the front cover. It struck me as something that a lot of us are in search of.  Therefore potentially, we could all benefit from reading the book! I had also listened to some of Ken's awesome TED talks online......  Thus It appealed to my curiosity and became one of my holiday reads. Here is the review.....

Sunday, 19 July 2015

Incompatible with life?.........Happy Birthday.... 20 today!




Twenty years ago today we were waiting anxiously... wondering if we would ever get to meet our little Henibean....alive.... as we had been warned by doctors that trisomy 18 (Edwards Syndrome) was incompatible with life.

Today we  have been celebrating Heni's 20th birthday...

We never would have imagined  at the beginning of those 20 years that she would be here right now and that she would still be gracing our lives with her presence.
Today my post is a tribute and a birthday wish to our little Henibean....


Friday, 17 July 2015

Walking with Wheelchairs - Stanborough Lakes



Today was one of those days when you have a double booking! (I had a triple booking actually, as I was supposed to go run with a friend!)
Heni had been given the opportunity to go on a trip (from college) with all of her pals.... but we had also been sent a wheelchair clinic appointment to attend. 
Dilemma....Which to chose?!
The temptation was to drop the clinic..... but over the last few months she hasn't been sitting quite as well in her chair so duty and necessity got the better of us and we felt obliged to attend the clinic. We traveled up to to Welwyn Garden City (about 40 minutes journey away), attended the appointment, and 10- 15 minutes later....after a few turns of a spanner and some minor adjustments to her chair, we were sent on our way.



The wheelchair clinic complete with bluebells!
 We thought it was a shame that Heni should miss out on her trip and seeing as we now had the rest of the morning off college we decided to go on our own little adventure with her.

Tuesday, 14 July 2015

Walking with Wheelchairs - Call for walks from around the world!




 Today is a bit more of an unusual post as I wanted to explain a little bit about my previous "Walking with Wheelchairs" blogs. As some of you will know (who have read the previous posts) I really  enjoy walking and we also like to go on walks frequently as a family. When you are accompanied by someone in a  wheelchair though,  you can be stuck for choice as to where you can go. Sometimes you can look up accessible walks on line ( (at places like http://www.walkswithwheelchairs.com/) but it's always nice to find new terrains and vistas to explore.  
We have some set routes that we like to do but occasionally we like to just go and figure it out as we go along..... sometimes it works..... sometimes you get stuck in a field and can't get out again!! 
(mostly you can with a bit of muscle power!)

Sunday, 12 July 2015

A place to chill - Heni's garden Swing


We all need some solitude from time to time and need to carve out a bit of  sanity space purely for ourselves..... without anyone else encroaching up on it.  Finding that space however can sometimes be a bit tricky. 

Take my  Sanity Space (AKA craft room) for example... it gets hijacked all the time by my teenagers. They  come to borrow glue sticks, raid the paper stash, print stuff out and use my sewing scissors for cutting paper!!! Hubby has also been recently frequenting it more and more often lately....to write his book!

But what about  a special space for Heni? She can't exactly be left alone to chill out (unless she is in bed with the cot sides up as she needs to have someone with her all the time)...but it is equally important for her to have a special relaxing place that also provides her with a nice change of scenery.

Friday, 10 July 2015

Making memories and traditions 3 - Strawberry picking



 Just last  Saturday we were all at home with no planned agenda and no respite organized for Heni. We often go a bit stir-crazy if we have to stay in all day and so we decided to take a trip to the local garden centre to pick up some gardening supplies... it would get us all out of the house and also check a few jobs off the "to do" list. 

On the drive back home however, we noticed the PYO sign that looked rather enticing...that time of year again... already? We contemplated going home as Heni gets tired quite quickly these days (we had already been out a few hours) but we decided we couldn't miss the opportunity. By the time we might  get a chance to come back again they may all be gone... so we decided to make a unplanned stop and pick some juicy strawberries and hope Heni would play ball.

Wednesday, 8 July 2015

RANT- Payroll companies for carers





 So It's been a while since I had a rant here on the blog....but this post is definitely going to be one! 
......But hear me out..... as it may be a very valid rant for those of us who look after our own care budgets and use payroll companies to help with pay calculations, payslips, and tax and national insurance liabilities.

You start out (at the beginning of time) purely as a parent/carer of a disabled child...... and over time somehow you end up as a "multi-conglomerant employer of care workers" with all the extra responsibilities that the roll entails.  For some people that may not be such a big deal as they may very well have done that roll before... but for others like myself (who had never employed anyone before) it can be a hugely daunting task.

Sunday, 5 July 2015

Elderflower foraging - A summer Immune boost


 
 
As mentioned before, daughter number 2 likes to call me the "white witch", namely because I like to make lotions and potions and am often found to be concocting something weird and wonderful. One of the things I like to do around this time of year is go picking Elderflower. At the moment In England, it is out in full force ....but maybe in other parts of the world it is over and done with for the year or doesn't even grow where you live. For those of you how are unfamiliar with Elderflower, it is known as a fantastic immune booster and is good for summer colds  and respiratory complaints (If you want to learn more about elderflower you can follow the link here).
I like to make a batch or two of cordial to keep in the fridge and use it if any sniffles arise in our household.  It's especially good for Heni to keep the bugs at bay! In  the past I've used Hugh Fearnley Whittingstall's recipe (Here) but last year I made an elder flower glycerite (here) instead because I didn't like the idea of the amount of sugar the recipes usually contains. This  year I looked around for another version to try out and found a raw Elderflower tutorial on line. 

Thursday, 2 July 2015

Heni's story - Part 3



I don't remember much (from memory) of the first few years of life after Heni being born... it was one great long blur... a period of time in which I felt like I was in a black hole...constantly tired (hey what's changed?) and in a state that I can only call mourning.
I wondered every single day how long my precious little bundle was going to be around, but also at the same time trying to make the most out of whatever time that we had.
It's a weird "paradox" (that I still haven't quite managed to come to terms with fully)...
It's a mixture of mourning for the child you didn't have, mourning for the child who is still with you (but who may not be with you). This is mixed with the loss of a life that "could have been" but all the time trying to live here and now as normally as possible, trying to deal with the hand life has dealt you. At the same time, being ever mindful and grateful that I am a lucky one who still has the gift of a beautiful child who I can hold, love and enjoy. (Go figure that one out!)
All I can say is that it's a good job that I kept a photograph album and a journal to help me remember some of the things that she got up to during that very hard place and time.

Sunday, 28 June 2015

Book Review - Missing microbes ...How Killing Bacteria Creates Modern Plagues by Martin Blaser





This was one of the books I took to Malta with me as holiday reading. Some people may think it's a bit of a weird book to read instead of the latest novel... however I find books like this fascinating and have loved  learning about health and what happens in the body since as long as I can remember. I started reading it on the plane and managed to get some time (between all of our sight seeing jaunts) to sit around the pool and read some more...finishing it the day I came home. And now it's time to tell you a bit about its contents....

Wednesday, 24 June 2015

There must needs be "opposites" in all things



(This was written three weeks ago on my way to Malta)

Following my last post on laughter.... I actually don't feel like laughing right now (probably should though).
I'm sitting on an airplane having sprinted to the gate to catch our flight to Malta (a last minute surprise respite trip with my two youngest children). We turned up at the plane at about 6.45am (when all the signs said the the gate was closing at 6.25.... needles to say the gate wasn't closed and we have been waiting 15 minutes for everyone else to sprint here in a stressed out state too.... silly signs!
Today is feeling like the last 48 hours..... frustrating, rushed and stressed!

Hubby is working away this half term week  in the States (U.S) and we have a care worker  available to look after Heni for the whole week. Yippee! Rather than stay home we decided to book a last minute holiday... just me, "daughter no. 2" and "the hungry boy".

Saturday, 20 June 2015

Laughter




I love this picture... I came across it on a Pinterest trawl. It got me thinking about when was the last time I truly laughed?
When was the last time YOU had an hysterical giggle fit or the raucous bellow of a big belly laugh... the type that makes your sides hurt and you just can't seem to stop?

The last time I remember that type of a laugh was a few moths ago in the kitchen with Tom (hubby). The kids were at school and we were just talking and catching up when all of a sudden Tom erupted in to giggles at something I said. It seemed like it had been a while since I last saw him laugh quite like that and it set me off laughing too. This made him laugh more, and it escalated from then on.... each laughing at the other ....with a cycle of fits of giggles ensuing... tears rolling down both of our cheeks and us wondering how on earth it all started and escalated to the hysterics we were both experiencing. 
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