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 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 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.

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