Sunday, 31 May 2015

Respite ideas- Four wheel driving?

 .....and why not? 

All the fun stuff happens when you are on holiday... then its back home to the day to day house chores and caring duties again... so please bear with me and humour me as I elongate our holiday memoirs and tell you more exciting adventures from our Lake district trip (I'm going to need another holiday after this one to have some more experiences to write about!!)

As you can see in "Traveling to the lakes with Heni" we traveled "up north" in convoy...partly because of the number of people and partly because we wanted to take the Land Rover with us so that we could do a four wheel drive experience while we were there (Hubby had previously only driven it on "normal roads" and used it for hauling his wood around in.)
I knew that we couldn't fit everyone in the truck alone,  so I had telephoned ahead of time to a company called KANKU  OFF ROAD 4x4 EXPERIENCE ( asked them regarding their vehicle availability.
Fortunately they had lots of slots open the week we were there, as most holiday makers had already been and gone home again.
We decided that the  two hour experience they offered between 3-5pm would be long enough for us.

Wednesday, 27 May 2015

Walking with wheelchairs - Grasmere Lake from Rydal Car park.

  It feels like the "Eating out with food Intolerances" and "Walking with Wheelchairs" posts should be merged. Food and walking tend to go hand in hand and it is hard to separate the two.  Today I was thinking of putting the two together but the post was rather long... therefore I would like to tell you about another lovely walk we took with Heni while we were in the Lakes (you never know may need this information if you visit there one day!) AND  then in a future post do a review of "Greens" in Grasmere where we stopped for refueling at the half way point!

We have done this walk plenty of times before but have only ever been able to go a short distance with Heni in the buggy/wheelchair as the paths and stiles prevented us from going very far... HOWEVER we were very pleased this year to see that a heap of work had been done on the trail (presumably by by the National Trust?) making it more accessible.   The terrain was more chair friendly than before and the stiles had been removed and gates wide enough for wheelchairs  had replaced them. This allowed us to get all the way from the car park which is at the west end of Rydal water  (where it says TOILETS on the map) all the way round the south of Grasmere lake  (...indicated by the black dotted line but going in the opposite direction to the arrows).. to Grasmere village and then back in a circular loop.

Friday, 22 May 2015

The Quilt Treatment!

  A number of years ago we took a trip over to America to do Disney with the children and also attend a family reunion. At that point in my life I was studying to do a life coaching qualification and I was reading a number of different self help books as part of the course. I started to carry around with me a little note book and write down all of the affirmations and uplifting saying that I came across in my reading and day to day life.

While we were staying at my nieces house (for the reunion) I noticed that she loved to sew quilts and she very kindly offered to make me a wall hanging for above my bed with some of my favourite sayings from my note book embroidered on to it. This quilt has hung above my bed for many years now and its everyday reminders (as I get ready for bed each night) have been priceless to me. 
Now I'm sure you will all agree that there are "good days', and there are "not so good" days..... and today is one of the latter. On days like today I am especially grateful  for my quilt to remind me once again of some of the things that matter and some things I can remember to apply in my life. 

Today I'd like to share with you some of the sayings and pictures that have helped me to turn my mood around time after time and have helped me gain a bit of balance and find comfort amidst some of the turbulent times that have surround me.

Tuesday, 19 May 2015

Book Review - Cholesterol and Inflammation..a Naturopathic approach

Today's book is really a that I picked up in a health shop a number of years back on holiday (...good holiday reading of course!!)
This booklet came to mind as a friend of ours was diagnosed with high cholesterol just recently and I was thinking this would be of use to him and may be of use to some of you other folks out there.
One of the things I like about it is that it is written from a naturopathic perspective and looks at health and disease with a multi pronged holistic approach.
In medical practice these seems to be the opposite.  A diagnosis is given after  breaking things down in to pieces and individual components....  in search of a culprit who is then blamed.

We've all heard for years that cholesterol = bad news... (it being blamed as the bad guy that causes heart disease).  This book puts it in to context of the bigger picture of why we need cholesterol and what other factors may be the baddie creating disease states instead.

Monday, 18 May 2015


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Saturday, 16 May 2015

Making Memories and Traditions No 1 – Taking Pictures I just love Lilac at this time of year.....It reminds me of looking out my bedroom window when I was a young girl.  I could see the pretty Lilac tree in next doors garden and if I had the window open I would receive wafts of the divine aroma. When I would visit my grandmas house there was a beautiful lilac tree in her garden too. There is just something about looking at and smelling a Lilac tree that brings these memories back to me today's post is on the subject of making memories.

When you live with a child or family member who’s life expectancy is shortened… or you don’t know how long a time they are going to be with you… it is important to make memories.

Making each day count is key, as you never know when it may be their last. BUT it is equally important for siblings to have fun happy memories of  “normality” (if there is such a thing) too... and to have their own separate memory building experiences.
Through the years, instead of just buying STUFF, we have had the mindset of spending any money we have available on trips and days out… time spent on building and making special memories.
Sometimes that means that we all go on holiday together as a family WITH Heni. Sometimes we leave her at home with carers and take just the other kids to somewhere that’s more difficult to go when she is with us. 

Sometimes…especially over the last few years, I have had the fun and privilege of taking an individual child away with me and spending “one on one” quality  “alone time” together. 
Also each year the boys get to go on father and sons camp and so my youngest daughter and I have one on one time going and doing something girlie.
Sometimes tradition/memory building, needs a bit of organizing and some hard earned cash. Other times it is a simple experience that doesn’t cost a thing...a bit like the Lilac.
I’m often amazed and astounded at how children come out with statements like… "Remember when……” and then  give an account of a time that seemed like unorganized down time …..

                          the times we had the paddling pool in the garden 

and Katie would run a round with her fairy wings on… 

  ....The times spent fishing and paddling in the stream

.... or hanging out in the garden making music

or the funny little words that the kids would say when they were small. They still tease each other about how so and so said “tilly” room and “washysheen” instead of the utility room  and washing machine!
In this series of posts I want to share with you some of the things that we get up to and maybe encourage you to plan your own adventures and memory making experiences.It can seem really daunting at first... especially with our special needs kids or loved ones...but its well worth the effort looking back.

Today I’d like to show you a place we have visited on numerous occasions and each time we go we have a “family” photo shoot in the same spots. This year whilst in Cumbria on holiday over Easter, we visited Tarn Hows for the “umpteenth” time and as we walked around I would frequently hear the kids say ... “we have to have our photo taken here…Its TRADITION!”

Here are some of the pictures we have taken over three different trips.
( 4 trips updated to 2016!)

The mossy stump 2012

The mossy stump 2014

The mossy stump 2015
 The mossy stump 2016

The wavy bridge 2012

The wavy bridge 2014

The wavy bridge 2015

  The Wavy bridge 2016

The boys at the tree stump 2012

The boys at the tree stump 2014

The boys at the tree stump 2015

 The Hungry boy at the tree stump 2016

It's nice to realize that what started out as an activity of just taking a few family photos has now become something the kids "own" and treasure in their memories. One of my hopes (one day) is to fit all the kids, spouses and grandchildren on the "wavy bridge" and take pictures of the grand boys on the tree stump and the grand girls behind the mossy stump in the cute bear hat.I can just imaging the ring of little voices... they will hopefully also be saying …. "We have to take a photo here…it's tradition!"

Lets hope that the tree stumps and wavy bridge are still there by then of course!


Think of a place you love and that has meaning for you and start taking those yearly pics soon.

Wednesday, 13 May 2015

Heni's Story - Part 2

  It's a good job that Heni had those three extra weeks inside of me to be nourished and grow a bit more. I think the fact that she weighed a hefty 5 lb on her arrival meant that she had at least a fighting chance to survive. Sadly, most of the babies with Edward who are born alive are much smaller and fail to thrive. Over the first number of months she lost a considerable amount of weight as feeding was extremely difficult for her. She found it virtually impossible to suck because of the very high palate in her mouth...when she finally did get enough milk she would throw it all back up again and thus the cycle of "express, feed, vomit" was established. Hour and hours and hours of it.

Sunday, 10 May 2015

Sanity Space - Project silk eye mask and pillow case

Today's post is a follow on post from "Sleep....zzzz."

Here I am back in sanity space again! This post is about one of the projects I have completed just recently when I've had a bit of repite time to do what I want in.

In all of my efforts to try to better my sleep I have been using an eye mask, bought for me by a friend for my birthday last year. I have found that it has helped block out light and has definitely made an incremental improvement in the quality of  sleep that I'm getting. I've used it to death though and It's now ready to be thrown away in the rubbish bin. 

Instead of going out and buying a new one I decided I would have a go at making myself a "silk" version instead....together with a silk pillow case. 

Thursday, 7 May 2015

Eating out with food intolerances - Chesters by the River ...Cumbria

More on eating out with food intolerances..... This is a follow on post from our Cumbria Trip
...see "Eating out with food intolerance's - Lucy's" ...
One of the days on our Lakeland trip we decided to walk from Skelwith Bridge to Elterwater and back along the river..walking the map in reverse. It's a great flat, easy access route for Heni's wheelchair/buggy. Not too long for the oxygen to run out but nice enough to feel like we'd done something.  
see for other easy routes
Half way point at the Britannia Inn in Elterwater

We did the same walk last year and started and ended the walk at CHESTERS BY THE RIVER (cafe).  The location is great, It has a lovely deck by the side of the river and has a very pretty shop attached to it, in which you can buy anything from cards to blankets to books. 
Last year we did the walk for the first time and had a meal at the end.... which was very enjoyable. The food was great and very tasty .This year we wanted to go back and have a repeat experience.  Frustratingly it was a  different story. Although we had a really lovely walk we didn't have the most positive end experience with the food.

Monday, 4 May 2015

“Suffering” Disability?

Today's post may seem to have a bit of a contentious title to some… but an interaction a few weeks ago inspired me to write this. 
I had been corresponding with "Able" magazine about using one of my posts on their website. I had sent them a few articles and received feedback from the post on “Disability or Handicapped”
The Editor kindly pointed out to me that the magazine never suggest that people “suffer” from disabilities  and that they as a magazine try to promote that people  “live” with them instead. I totally agree and was very grateful for the insight. 

However, it got me thinking about our journey with Heni and the changes that have happened in our lives and things that we have experienced since finding out that she has Edwards syndrome.   

Friday, 1 May 2015

The Balancing Act- Life Balance

Have you ever tried to stand on one foot and balance? How was it? A bit wobbly? Or did you manage to stand perfectly still?
Have you ever twisted your ankle and found that it affected your balance....and then after, noticed that you kept on re twisting it?
 As a physio I have treated my fair share of ankles throughout the years and have found that one of the most important parts of the rehab in injuries like this is to work on balance. Unless you work on the reeducation of proprioception (I'll explain that in a minute) you will be forever vulnerable.

Proprioception is the ability of the body to sense how it is positioned in space. Within the muscles and joints and ligaments surrounding joints (in this case the ankle) are the nerve receptors that are responsible for picking up signals of stretch and tension. If you are standing on one foot and sway a little, the signals from these receptors are sent to the brain to be processed and acted on accordingly. If the body is swaying to the left it will counter it by pulling it to the right. It does this by a complex relay of information from these nerve receptors, up to the brain and back down to the opposing muscles. It is the ongoing interplay of these signals, constantly firing, that allows for continuous readjustments to position so that we don't fall over... and It's done mostly at a subconscious level. 
If these receptors are damaged (in the case of the twisted ankle) the information sent to the brain is impaired and it can affect the perception of how the body is positioned. It can also affect and slow the nerve signals to the correcting muscles...if you are then unfortunate enough to twist your ankle again, the correcting muscles don't have enough time to fire and you end up doing a whole bunch more damage. The ankle gives way,  you end up feeling off balance or you fall over.

So why am I talking about Proprioception today?
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