A different kind of Christmas

I've just finished looking through a mountain of photographs of Christmas over the years..... and have been re-living  a life time of fun moments that we have shared together as a family with Heni. I am so grateful to have all of these memories.

This Christmas it's going to be different without her.... and we will be making new and different memories... and in that "different" kind of Christmas celebration I am looking for ways to honour and to remember her in our family festivities this year. 
One of the things I want to do, is for everyone to write a letter to Heni to put in her stocking...it's still hanging above the fire place...just like usual....
 In years ahead it will become a family history treasure to look back on and read about the things that we have done during the years. It will be a blessing to read of ways in which we have noticed Heni's influence and legacy in our lives.

LIGHTtheWORLD

This week we enjoyed a family day out to Waddesdon Manor.... a local National Trust property near where we live. We've visited it every year for a number of years now and look forward to it as part of our Christmas traditions and a way of getting us in to the festive spirit. We enjoy going to see the house, trees, lights and doing some Christmas shopping at the wooden cabin "market" set in the grounds around the Manor. 

Equipment quandries!

The hardest thing to cope with after the death of a special needs child is adjusting to the lack of their presence and love being in your home. After so many years of caring for them.... the adjustment to their "void"  and to a different "way" of life is very slow and awkward.

It's made harder by the mountain of equipment that's left behind... a living memorial of that life, each and every day it remains there.

It's not that you don't want to be reminded of  your precious child... you do...you want to remember every smile, every sound, every hug and nuance of who they were... AND be reminded of the joy, the lessons  and the good times that they brought to you. 

What you don't want, is the remembrance of all the fights for care and equipment.... and the headaches and energy spent on trying to source and meet those needs... 
Having to walk daily past a room still full of those reminders is painful.  

100% ?

 It's the middle of the night and again I sit here not sleeping... thinking of Heni.... analyzing her life and the life we've lived with her over the past 21 years.
Earlier this evening I was looking at photos of the children when they were all younger... reminiscing of old times and feeling a sense of sadness. It was a feeling of having missed out on seeing my babies grow and having missed a lot of their childhood because of the time that it took to care for Heni's needs... especially in those early years. 
I've also been missing her and feeling a sense of guilt for not being able to give out 100% throughout those years to either her or my other kids. 

However, as I have been sitting here, a picture crossed my mind of years earlier (prior to any children), when I would go down to the athletics track to train. My coach would line us all up with a schedule each evening and would vary the workouts on each training session. Sometimes in the winter it would be a slow, longer run to build up stamina. Sometimes it would be a weights session to build strength. As the seasons changed so would the workouts. Sometimes he would give a pyramid of runs (3 x 2oom, 2x300, 1x400  and then back down again) and each run would have a percentage exertion level to aim for. 
As time for competition approached, the training distances shortened and the intensity increased to build speed and agility... but always the exertion level would only ever range between 60-90%.... we were only ever asked to give out 100% effort in the odd sessions during the few month prior to the competition ....followed by a light few weeks.... and then during the race itself. We were never asked to give out 100% effort  for 100% of the time. That would have been totally unrealistic and even dangerous....resulting in  fatigue, burnout and injury.

It could be worse...

It's been just over one week since we said our goodbyes to our deer sweet Henibean. 

Empty chair and an aching heart...

 I woke up this morning after a bad night sleep to what I thought was the hum of the nebuliser down stairs.... 
Had I slept in?  Was Hubby getting Heni ready for the day ahead? Then Boom... reality suddenly hit me with full force, and I was reminded of the past few days ....my heart heavy and aching with the thought that this would never be so again.

On Tuesday morning, after 21 years, two months and 23 days with us here....our angel Heni gained her wings while she was sleeping peacefully. Her time with us on earth was up ....  It was the perfect ending to her perfect little life. She was born at home, she lived and loved at home surrounded by those who  loved her.....and she died here in her own cosy bed.

NORWAY.... NO WAY!

 Hi folks, I'm back! 
I haven't posted anything over the last few weeks as I've been away on a respite trip to Norway with Hubby, Daughter Number Two and The Hungry boy. Wow! What a country!  
I visited Stavanger many years ago when I was around 13 (athletics exchange trip) and I remember it being a beautiful country from back then, but I have never been back.... until now.... and had forgotten how spectacular a place it really is!

Heni's sensory bags

This week I have been away with The Hungry Boy on a day, night, day trip while hubby is out of the country and daughter number two is on a youth camp (I'll tell you all about our adventures in a future Making Memories and traditions post) AND, I'm also trying to get ready to go away on an upcoming respite trip to Norway without Heni. So you could say I've been a bit busy and preoccupied..... which has left me with no time to do much else... including writing a post!

  So today is going to be a real quick  and easy one.....I am going to be showing you a few of the themed sensory/play bags that I made for Heni to be used in conjunction with her 21st "birthday mural". I thought the bird and flower theme from the mural could be carried on with some prop/toys. 

Tunnels

  A few weeks ago we were away in Devon on a family holiday. Heni came with us (along with two carers).... and my son and daughter in law flew in from America to join us for a  part of it. It was lovely to escape the crowds, enjoy the beach and sea... spend some time as a family... and also celebrate Heni's 21st birthday. 

On one of Heni's "stay in" days we visited a really novel places called "Tunnels Beaches" in Ilfracombe....

Sanity Space - Heni's birthday mural (Part 2)

I'm so glad that you could join me this week for the second part of Heni's 21st birthday "surprise project". As you have probably guessed by now, it's an outside mural which is going to brighten up a dreary deck and be an area in which Heni can go explore some of her toys and sensory bits and pieces.
 Last week in part 1, I showed you how Hubby and I made the huge picture frame that was to become the canvas, and I  also gave you a sneak peak of the flamingo  below...

This week I am going to show you some of the various stages and changes to the project so that you can see how it progressed and took shape throughout the 7 afternoons that it took to complete! 

21 today!

 21 Today! 

I thought I would just quickly add a few pictures from the beach yesterday (of the birthday girl in her early birthday pressie hat) for you to take a peek at. 

Sanity Space - Heni's 21st "Surprise" Birthday Project (Part 1)

It's  going to be Heni's 21st birthday next week..... a very special milestone in hers, and our lives...... AND it's  also a day that I never pictured or envisaged we would ever reach.  To celebrate and mark the occasion, one of the things I wanted to do was to give her a gift in to which had gone a little thought... something that required some sweat equity, some time and a lot of love.
 ......and so for the last few months I have been dreaming up ideas, planning away and working on a project that I thought she would really like. 

Last year we transformed an old trampoline in to a swinging teepee tent, and this year I had ambitions to make over another section of the garden that has been unloved and neglected.... a deck at the back of the house that hardly gets used and has a boring brick wall at the end of it (a by product of our neighbour's extension). In my minds eye, I had a plan to hide the ugly wall and in doing so make it a fun bright area for Heni to go outside and use and enjoy on nice weather days.

Hubby helped me with the first part of the project (today's blog post) and a friend of mine helped me on part 2 (coming real soon!)

I enlisted Hubby for his wood working skills (and of course his state of the art power tools and truck to collect materials!)

Maintenance

This week has been a busy one...I've not had the time to write a (proper) blog post as I have been occupied finishing a few projects I've had on the go..... but mainly my week seems like it's been spent on maintaining lots of things.

The paint has been peeling off the deck and so it got a new coat of paint.... 
The weeds are growing like.... well ...weeds.... and I've been trying to keep on top of them....
The shower sprung a leak upstairs and damaged Heni's bedroom ceiling below and we had the plumber round  trying to fix it....
...and I've also been striving to keep on top of exercise and health matters... hoping to maintain the ground I have managed to achieve and not go backwards (given the lack of energy I have had to put in to it).
It seems like this weeks lesson (for me) has been one of "continual upkeep".... so hence a few last minute ramblings about it!

It is a natural occurrence for things to start to decay and go backwards. It doesn't matter what subject you can think of...(homes, bodies, relationships etc).. without continual effort, conservation, nurturing, preservation of whatever we come across ... most things will begin to fall apart. 

Caring.... and the E.U.

I has been just over a week since the historical result of the Referendum here in England..... and all week long I have been listening to radio shows (airing peoples opposing opinions) news programs, (reporting daily events) and people posting contending views all over Facebook. It seems that every person around the world has a view on this subject and has a judgement as to what is right or wrong, or what should or shouldn't have happened. 
Many people can't make sense of what just played out here and are either confused or angry as to why the majority of a country would vote to leave from a union of countries which was initially designed to bring economic and political stability to a large part of the western world. 
The media of course has also done its part in twisting,  hyping and stirring every conceivable arguement... warping opinion and making what is already a highly sensitive matter even more divisive and inflammatory.
 A small percentage of the people who voted "remain" are petitioning and rallying forces for a second referendum and even smaller number of the "leavers" have reared their ugly heads and have exhibited appalling racist behaviour in and around Britain.  Many people in Europe are feeling let down by the decision to leave the E.U and are angry at Britain for making such a choice. 
I'm no politician... but when I take in to consideration everything I have heard and seen throughout the months previous to the referendum, and since, I would like to offer an alternative way of perhaps explaining or thinking about it to those of you who are still reeling in the wake and wondering why the majority of the populous decided to vote leave.

Sanity Space - Free Hand Machine Embroidery course with Katie Essam

 

I've been working on a  number of projects just recently.... literally just yesterday I finished working alongside a friend on Heni's birthday mural... (blog post coming up soon!) I've also had a project going on making some planter boxes for the area near the mural on the deck to name just a few.
It seems like I've been on a creativity adventure... 

Today I hope that you will forgive me for putting up another  "Sanity Space" posts about one of the projects I finished a little while ago. 
About a month ago I had the chance to go on a free hand machine embroidery and applique course run by Katie Essam.  I came across her work at the Knitting and Stitching Show at the beginning of the year and decided to get a few girl friends together for a fun morning of receiving some tuition and learning a new skill/craft.
Unfortunately one of the group broke her wrist a few days before the workshop so it ended up with just me and one other friend participating. However... we had a great time and learned lots and below are some of the steps that Katie showed us during our time with her. 

Out and about with Heni @ The Stockwood Discovery Centre

 To go on an outing with Heni, there are a multitude of factors that all have to intersect at the same time...
...a few of them being ...
...she has to be healthy and feeling well.... the weather has to be reasonable... we have to have a free day... we have to have the energy and motivation to get everyone organised... AND we need to have somewhere accessible to go that will be of interest.

Eating out with food Intolerances - At "Bel & The Dragon"

If I find a good place to eat...I usually like to share it on the "Eating out with food intolerance" section here on Henibean. Two weeks ago during half term we found a fab venue during our day out at The Sculpture Park (see last weeks post ...The Sculpture Park)...and today I'd like to tell you a little about it. 
Bel and The Dragon is a cosy classic country Inn, nestled between the historic town of Farnham & the Devil’s Punch Bowl...not only did we think the Bel and Dragon had an apt name... after seeing the magnificent Dragon  at the Sculpture park .... but it was in the ideal location too.... a mere stones throw away, and short wander over the road from the park entrance. This meant that we were able to walk around half the park, have lunch, and then after refueling, walk (or should I say roll) back again to do the rest of it....

I don't know if you have any sensitivities to food (possibly if you are reading this)... but if you do and you are anything like me, you may get rather tired of going somewhere and feeling like there is either only one item, (or no item) on the menu that is suitable to have. If there is something, then it is a rare place that has the ability to make that one thing appetizing and a real treat to eat... and make the whole process a pleasure to dine without making you feeling like you are an "inconvenience".

Making Memories and Traditions - Creativity and The Sculpture Park!

At the beginning of this week on Bank Holiday Monday (a National Day off here in England) we decided to spend some respite time away from Heni and head further down south to a place called The Sculpture Park. The idea was to not only spend some quality time together as a family, making memories and creating traditions..... but also to get some ideas to incorporate in to my next project that I'm working on for Heni's birthday in July.

The Sculpture Park is the world’s largest all year sculpture exhibition which covers 10 acres, and houses hundreds of sculptures that are being exhibited there before being sold...and as a result... the park is constantly changing.
There are over two miles of trails that meander around...

Sanity Space with "SweetPeaAndSam"

Most of you know that I love a good creative project and that I also like variety... you could say that I'm forever on the look out for something interesting and different to try my hand at...and also to provide that much needed diversion to balance out life's challenges. So, one afternoon last week, I  joined a friend of mine (Sam) to work on something I had never done before.  Today on "Sanity Space" I would like to share with you some pictures of the process ....and of course a peek of the final article. 

Sam is really good at making things... especially lampshade which she creates and crafts by hand...(taking inspiration from Victorian and Art Deco eras). She loves working with wood veneer, and uses laser cut, hand painted leather to decorate her projects...

Special needs Equipment - Heni's new bath!

 
It's not everyone who can boast that they have a huge bath in their living room! I wish I didn't have to... but there it is above...

Productivity...& the grape vine!

Do you ever get to the end of the week and wonder what you accomplished? 
Me too!  I often feel like what I've done is just not enough and I end the week with a list of things left undone. The tendency in such circumstances is to focus on what is still left to do, and not give yourself any credit or a pat on the back, for what you actually HAVE accomplished. 

These last few weeks It feels like I've not achieved very much... at times like this I have to give myself a talking to and remind myself of some of the things that I DID do and congratulate myself for at least still trying! When I focus on this, I have to concede that even though my progress is not as I would like it to be.... it is still progress!!

During these last few weeks I have enjoyed having some sunshine to be outside and do garden jobs. I have noticed within the last few days that my grape vine (the one I thought I had killed last year by pruning too hard) was starting to show signs of life again... 
I have been watching and waiting for a few months, hoping and praying that it would spring back to life.  Beneath the gnarly bark,  growth has slowly but surely been occurring ... progress that until now, has been largely happening out of sight.  
The other day I noticed  buds emerging and now the little lime green leaves are  appearing  and unfolding,  growing bigger day by day.  

Linky parties

 

Just in case you are interested... here is a list of some of the linkup parties on which I sometimes share Henibean's posts. They are all great blogs hosted by wonderful individuals who are trying to make a difference in the lives of others... please go take a look at some of them... and also take a minute to check out all of the other fab bloggers who post there...


Monday

Reflect His Love and Glory
Inspire Me Mondays
Monday Musings
Literacy Musing Mondays,
http://donnareidland.com/linkup-gift-wrapped-by-god-why-wait/
http://www.dwellings-theheartofyourhome.com/2016/03/amaze-me-monday-154.html
http://www.lorischumaker.com/

Tuesday

Tell Me a True Story,
Testimony Tuesday,
Intentional Tuesday,
SDGgathering
Titus 2sday,
Titus 2 Tuesday,
Different Dream,
#RaRaLinkup,
Together on Tuesdays
Tell It To Me Tuesdays
Totally Terrific Tuesday

Wednesday

http://youresewtrendy.blogspot.co.uk/2016/02/flooded-with-peace-and-sitting-among.html
Women with intention, 
A Little R and R,
Holley Gerth’s Coffee for Your Heart,
http://www.iwillservewhileiwait.blogspot.co.uk/2016/01/waiting-onwednesday-link-up-43.html#more
http://www.w2wministries.org/
http://www.faithbarista.com/
Wonderful Wednesdays
Tell His Story  
Wholehearted Wednesday
Wordless Wednesday  

Thursdays 

Party At My Place 
http://www.tots100.co.uk/category/linkies/
http://www.runningwithspoons.com/2016/06/02/thinking-loud-185/  
Friday:

Five Minute Friday,  
Blessing counters, 
Friendship Friday Blog Party
Grace and Truth Link-Up 
Faith Filled Friday,
http://lifeasweknowitbypaula.blogspot.co.uk/2016/04/no-rules-weekend-blog-party-181.html http://www.coffeeshopconversations.com/blogging-success/
Saturday Sharefest 
Friday Features,  
Faith and Fellowship
Dance With Jesus 
Friday Features Linky Party

Saturday

Weekend Wind-Down Party


Sunday:
Word of God Speak
Family Joy Blog Link-up Party
Give Me Grace

Water therapy

There is something that is just so healing about water and I love being near, around or immersed in it ... in fact, water is one of our six best doctors ... (that is:- sunshine, air, exercise, rest, diet and of course...water). 
It is a versatile element .... we can drink it, admire the beauty of it in great lakes , streams and oceans, swim and exercise in it, float in it, bathe in it... and apply it to different parts of our body.  We can even add oils, clay and salts to it .....and each one of these modalities has countless physiological and psychological benefits.
So...after last weeks Aqua class post, I wanted to follow on with the water theme and tell you  a few things I was reminded of at one of the lectures I attended recently on Hydrotherapy ...at the Naturopathic Iridology Symposium in London.

You may remember from a previous post that my primary training is in Physiotherapy....so when I  came across Hydrotherapy (whilst training as a Naturopathic Iridologist about 10 years ago), I thought that I was pretty well versed in it. I  automatically assumed that it was something I had done for a long time.... namely carrying out therapy exercises in some lovely warm water... many of you may have even done it...and perhaps this is what comes to your mind when you hear about hydrotherapy too?
However, I soon learned that Naturopathic hydrotherapy is more inclusive and can be used in many and varied ways.  

Aqua class

Did I mention to you that I love water!? I think I  may have once or twice...(or even a few more times) here on the blog.   However I didn't always. As a kid growing up, I was given the standard swim lessons that everyone had, but could never swim with my head underneath the water. It was only in my 20's (when I joined a triathlon club) that I learned how to breath and to do the crawl properly. It took months of coughing and spluttering before it all clicked in to place and I began to feel like a duck in water. I swam through each of my pregnancies, and after... (to get back in shape) and I feel like learning to swim has been a real blessing in my life. 
Now I know that some of you out there are probably saying in your head that you hate swimming and that you can't breath either and have perhaps given up on going to the pool to exercise.
But have you ever considered going to the pool to do a work out in the water instead?  

Sanity Space - At the knitting and stitching show

I do like a good day out. It's always great to have a change of scenery, go somewhere different and  do something new.  Although I've been to the knitting and stitching show at Olympia a few years in a row with my "Crazy Crafter friend" , it's only the last few years that we have decided to try some of the taster classes that they've had on offer. Last year we had a go at Swiss embroidery (aka chicken scratch?) and this year we signed ourselves up for a dressmaking class.... to have a go at making a skirt....
The last time I did something like that was when I was about 14.... I remember making  a skirt at school that was far too small for me and that I never ever wore. I hate to be beaten by a foiled attempt, so I thought it was time to give it another go and see if I could do any better. My buddy and I  always enjoy a good project (or two) and so we headed off for our day out with high hopes of coming away with a lovely new article of clothing to wear.   

The Struggle!

I'm now home after a lovely week in the Lake District and back in to catch up mode. I always love to do a few of our favourite walks while we are  up there and take in all the gorgeous scenery. This year we did a few of the usual's.... like Grasmere Lake and Tarn Howes.  We did however add some new ones to the list because we had to stay in the southern lakes due to the road up to Keswick being closed.... it had fallen in to the lake! (caused by all the flooding around Christmas)
We did a lot of Tarn walks....which included Loughrigg tarn, (and here), Blea tarn,  Little Langdale tarn, Moss eccles Tarn (where Beatrix potter loved to go)... and a lovely walk from Wray Castle down by the side of the lake! Some of the walks we took Heni on and others we did on her rest days. We even got to go back to Lucy's again this year for another meal catered to our food intolerances.

On one of the days, we also took a drive up over the hills to Glenridding at the other side of the pass.  To get there you have to go up a 20% gradient road, along narrow stone walled lanes that wind back and forth. The climb covers more than 4.8km of twisting road, cutting through what is a stunning backdrop and the road is aptly named...... its called The Struggle!

Digital Detox Time...

If you would like to catch up on Last Years Trip, see some more pictures of the gorgeous Lake District (Cumbria) and want to read more while I'm away, you can read about:

....Our Journey to the lakes - Traveling with Heni ,

....See some book reviews- Calm by Michale Acton smith and Alex Tew  (I read this last year on our trip....and  Beyond the summit by Todd Skinner, (which has some pictures of our climb up the Old man of Coniston!)

 ....Read about some places to Eat out with food Intolerances at Lucy's in Ambleside  , Chesters by the River and Greens of Grasmere 

....and find some  walking with wheelchair ideas: Grasmere Lake from Rydal car park
and fun ideas like our Four Wheel Driving respite day. 

Have a great few weeks and I'll see you on the 15th!

Jx

Blog birthday.... 1 Today!

One year ago today, Henibean was born.... it all started with my Hello post.  At that time I had a goal to reach 100 blog posts in a year and I am happy to report that goal was accomplished on Friday last week... so today, on Henibean's  first blog birthday, it's just  the cherry on the cake with post 101!  

A picture tells a thousand words...

They say a picture tells a thousand words.... that's an English idiom referring to the notion that a complex idea can be conveyed with just a single image....
To some people daffodils, bunny rabbits and pretty painted eggs convey the message of "EASTER".... but to me Easter is summed up in a beautiful painting  called Why Weepest thou?... by Liz Lemon Swindle ...

Book Review - Brain Maker by Dr David Perlmutter

  A few weeks ago, I logged on to the Microbiome Medicine Summit and listened to a bunch of talks on the subject of gut bacteria! I came away with a list of things to read and research....one of which was a book that took my interest... It is called "Brain Maker" by Dr Perlmutter.
When I read a book I usually ask myself a few questions...such as, what are the main stand out points for me and what are the walk away practical things that I can use from it? Today I would like to tell you a little about the book and a few of the points I came away with. 

Sanity Space for Hubby - The Suana Project

  In today's busy world, It's important for everyone to have some type of stress reducing outlet or activity.... and different people have different methods of achieving this.
As you are probably aware by now, a few of my outlets are.... exercising, being outside, learning new things and doing projects.... and over the last (almost) year I have shared a few of these "Sanity space projects" with you on the blog. These projects have been done during respite time, or time away from the family. It's important for us mums and carers to get the necessary Time Out to recharge the batteries and refresh....but today I wanted to show you a project  that Hubby has enjoyed doing in the bits of "CAVEMAN"  time that he has had.....or perhaps I should say "WOODSMAN" time?

It all started about three years ago after a summer respite trip we had taken to the Swedish Archipelago off the coast of  Stockholm. We had traveled around from island to island and everywhere we went were these amazing Saunas or (Bastu) in the most picturesque of places....

Lincoln trip and Eating out with food intolerances @ Thailand No1

I know it's only the beginning of March.... (but I know how some folks like to plan ahead)  so today I thought I would tell you about a trip that daughter number two, Gem and I took  at the beginning of December last year. We went to Lincoln (England) for a girls weekend break and to have a mooch around the Christmas markets! I know you probably don't want to think about Christmas right now and I promise it's not going to be all about that....  this post also includes an "eating out with food intolerance" restaurant review that we ate out at as well!  You never know, Lincoln may be somewhere that you want to put on your bucket list of  places to visit in the future.... or the market may be on your list of things to do?

Everyone has challenges...a blogging buddy interview.

In four and a bit weeks time I will have been blogging for a year...(Yes it's going to be my blogging birthday on the 28th March!)  and throughout this year I've been linking my posts up to a number of different linkup parties to try extend Henibean's readership and reach.  In February I took up the Solidarity Sister's blog challenge (given out by Susannah over at Simple moments stick... and was paired up with a blogging buddy called Elizabeth, who lives in sunny Florida ....she writes a blog called:- 

Elizabeth had bacterial meningitis when just 16 months old, the outcome  of which was damage to both of her cochlea and subsequent severe hearing loss in both ears. Over the last four weeks we have been getting to know one another, learning from each other and have been sharing hints and tips on how to improve .....and in today's post I have interviewed my new friend, the lovely Elizabeth, to find out how she is learning to live amid challenges as a deaf mom to a hearing child and finding out how she maintains health, sanity, creativity and copes with balancing her busy life.

Heni's Story - Part 4

I love the photo of Heni above in which she looks like she is playing the harp! It was taken when we celebrated her 8th birthday...almost 13 years ago. We had a garden party, food, friends in fun hats, a balloon release and even a harpist, who played us beautiful music to chill out to... and we were even favoured with fantastic weather. It was one of those times where you "mark the occasion"....making something memorable happen... a memory to look back on with fondness.
Because of Heni's diagnosis of Edwards Syndrome we have never really known how long she would be around; we have experienced multiple roller coaster rides where she (and we) hit the bottom and thought that it was the end of the ride....and we never ever expected that she would still be there with us back then at the party. 
.....Even now all these years later, I never expected to be sitting here writing about her while she is fast asleep (having her routine afternoon nap after college)....AND In just five more months will hopefully be celebrating her 21st birthday!