Sunday, 18 March 2018
It's Sunday the 18th of March 2018....World Trisomy 18 awareness day (and month)!
It seems like forever since I last wrote anything here on the blog and I've missed it... but It's been a journey of many ups and downs and even now over one year on from losing Heni, our Trisomy 18 warrior, it's still really hard and a constant daily battle. A journey of adjustment to life without her.
However, despite the lack of motivation that I often have (to put words about how I feel down here on these pages) I didn't want today to slip by and NOT remind myself (and you) of the enormous blessing that my daughter was and that all of these precious little souls with T18 are.
We are especially grateful to have had Heni with us for over 21 years...a lot longer than the average! Some would say it was a miracle that she lasted so many years... and it truly was. Heni never had her heart mended, had minimal intervention, and we tried as best we could to give her a life free from hospitals and the pain and discomfort that they often bring... that was our choice and it worked for us and for Heni. However, I know that other parents would chose differently but unfortunately they are frequently denied the ability to access the often needed medical procedures that they would like for their children.
A lot of the medical profession still see Trisomy 18 children as being "incompatible with life", and doom many of these precious kids to a death sentence by this denial. I've seem countless stories on Facebook support pages from far too many parents about the denial of tube feeding, heart corrective surgery and so many other life saving interventions. How can this be? Isn't one life just as precious as another... despite the "seeming lack" that some children are born with?
I'm pleased to say that there are many Trisomy organizations (and parents) throughout the world who are doing a much needed job of educating professionals and spreading the word, changing perceptions and hearts along the way. They are also giving hope and courage to new parents who are often sent reeling in to shock when faced with such a devastating diagnosis.
The world at large are also often in ignorance of the innate value of what these children can bring to life and are unaware of the love and lessons that they share ...even during the briefest of sojourns through it.
That is why stories of families and children who do survive are so hugely important in this educational process and to that I have tried to add my voice and would like to again today.
Yes, we have shed many tears and felt much heartache during Heni's 21 years, but she was definitely compatible with life in many ways, and lived life to the fullest that she could. She needed full time care, needed help with everything, but she also gave back to life so much more than she took out. She was able to teach many lessons, gave so much love to everyone along the way and brought a mountain of joy during her lifetime. Although hard, I would never wish to have been without this learning and experience and feel that I am so much the better for having had her in my life.
So on world Trisomy 18 awareness day I would like to ask one favour of you, and that is ....if you know any medical professionals who are still under the misconception that these children are a waste of medical resources or the right to life.... I would kindly ask you to point them in my direction and share Heni's story with them. OR better still send them to one of the support organisations that can share educational resources with them and enlighten them of the right to life and immense value of these precious kids.
If you would like to know more about Heni you can read more here
Heni's story part 1 here
Heni's story part 2 here
Heni's story part 3 here
Heni's story part 4 here
Heni's 21st here
Empy chair and an aching heart here
Wednesday, 11 October 2017
I cant quite believe as I sit here in the early hours of the morning that one whole year has passed by since the death of our sweet angel Heni. I am sitting, in perhaps what could be called the "portal to heaven"... the exact same place that we found her lying peacefully asleep... taken home to rest from her mortal sojourn.
The room has changed. Most of her "things" are lovingly packed away in her memory chest....there is no bed.... and no Her.
The room has moved on... re-purposed in to my new craft room.... but as I sit on the sofa (where she would have been sleeping in her bed) and as I cast my eyes around, I can still see Heni. The bright multi coloured rainbow pompom banner still hangs from the window. Her photos cover the walls in family portraits. Her yearly milestone pictures hang just behind me on the wall. Her purple fluffy blanket lays next to me on the sofa ...and there is one lone piece of clothing that I still keep here in this room. Her fluffy heart dressing gown still hangs behind the door in the same place its always been. Sometimes as I walk by ...I can still see her in my minds eye all wrapped up in it after bath time. Sometimes I take it in my arms, close my eyes and imagine that she is still in it...smiling away and making her noises and smelling of mango and coconut body lotion.
Yes the room and the world moves on.... still rotates... and time passes by on lightening speed...
but many things remain exactly the same.
My love for her remains constant... perhaps even stronger than ever. My desire to be with her again one day, is strengthened and resolute. I think of her every day... and often shed tears... and perhaps I will for the rest of my life. I now don't see that as a bad thing.
To begin with I thought that maybe grief was a journey... something to pass through and come out the other side....but as time has moved on, and life has changed I am coming to realise that the persistence of grief itself is part of loving someone so deeply. That is not to say that grief itself doesn't change... and progress... it just remains.
When you have had the privilege of loving someone... your love for them doesn't just disappear when they leave. It stays behind and goes through a transformation process of itself.
Just as Love is an eternal entity I believe grief is a part of that love too.
I grieve that she is no longer here with me physically...I guess it's the love that is left behind when you no longer have that person with you..... a wierd mathematical equasion that some how works out to be...
Love + presence = Joy
Love - presence = Grief
Perhaps what I am currently learning is that coming to a state of Acceptance doesn't mean that you no longer feel grief. Grief is not necessarily absent when Acceptance arrives, and the two states are not mutually exclusive. Both can exist at the same time and grief "is what it is". We can't rush it, change it or avoid it. We can, however, learn from it.
Heni taught me that (in a round about way)... she taught me to look at things in a different way and be open to what comes my way...she taught me to watch, observe, feel more and try not to judge and go with the flow a little more. With grief you just have to go with the flow.
I still draw every day on what I learned from Heni.
Acceptance of a new life is a journey and a process which takes time. Coming to a place of acceptance doesn't always mean that sadness, tears, or missing a loved one disappear. I think most of us just get better at coping with our sadness and loss.
So as we mark Heni's year passing today, my heart is heavy at her absence... and tears come easily for losing something so precious as her from this life. She is greatly missed and life without her is very very different.
As time continues to pass by and more changes occur in this temporal existence...love and grief are some of the only remains left behind of all of our lost loved ones. Although they are no longer visible to the human eye, I believe our loved ones still feel our love and forever remain a huge part of our lives.
Monday, 24 July 2017
Since my last post on Heart Photography and Visualization, where I told you about my "heart challenge", I have continued to photograph even more hearts and post them on my Instagram account (For those of you who don't YET follow my Instagram you can see some of them when you scroll below)
I mentioned that It all started out as a way of "intentionally looking" but ended up with each heart being a message to me of:-
"If you look you will find"
"If you work you will achieve"
"If you try your hardest you will be blessed"
" We are all surrounded with hearts from a tender higher being who showers love on us each and every day... sometimes without us ever seeing or realizing it"
The treasure hunt each day for the perfect heart photo allows me to look for those tender mercies and tokens of love all around.... with each heart acquisition & creative pursuit (for the most unusual shot), it somehow adds to consoling and healing my own broken heart after the death of our sweet Heni. Slowly, slowly each heart reminds me that love is eternal and binds the pieces of my own shattered heart back together again.
This week has been a time of mixed emotions.
In some aspects it has been particularly hard as we celebrated what would have been Heni's 22nd birthday without her. We spent a day at the beach....which was one of her favorite things to do. We took her tent (the one she loved to sleep in at the beach every holiday), one of her quilts to lay on, a BBQ and LOTS of food....
...and we chilled out and swam in the sea.
I missed her so much.... but the sun shone and I knew that she would want us to be happy and enjoy our day.... her day.
It is a day that will always be special to me as it was the day she came in to our lives... a day in which we were blessed for 21 years with her presence.
She taught us, tested us, loved us and made us laugh... and her strength and beauty graced our home.
We celebrated with a birthday meal later that night...ate even more food and came home sun kissed, tired, sad but also happy and ready to flop.
We also had a happier celebration this week as Hubby's new book went live on Amazon! We were excited for the box full of books to arrive on our doorstep and to inspect the fruits of two years (plus) of hard work... all done while helping me to care for Heni in her last few years of life... a huge blessing (when we look back in retrospect) as he was able to help care for and be with Heni... spending precious time.... and also spending time writing from home. She would be so happy and proud of her daddy to see this day.
Soon we will be heading off on a summer adventure, it's going to be a welcome change of pace and scenery and I'm looking forward to seeing what other "heart moments" I can find on the journey. I will, of course, be sharing them all with you and posting them up on Instagram and Facebook.
Life is moving on slowly but surely. It doesn't stop, even though if feels at time like my heart does. Each milestone and hurdle to jump is a step closer to her... and as time passes we have to make sure that life doesn't pass us by and enjoy each moment we have. This week I encourage you to make the most of every opportunity, hug those you love, say what you feel, plan something special and do something for someone else who is having a worse time than yourself.
I hope you have a wonderful summer and I'll see you all next month.
In addition to the ones above you can scroll below to see some more of the most recent heart photos below:-
|Taken at the "Free from" show at Olympia|
|Ascot House gardens - National Trust Property|
|A friends entryway!|
|Tiled entry way to a house in London|
|Old lecture theater at Enfield Hospital|
|Evening shot of wrought iron gates in Ashridge Estate|
|Ornate heart shaped table leg!|
|Heart shaped wrought iron gates|
|Wrought iron Gazebo roof|
|Sideways hearts on balcony|
|Heart tiles at Frinton on sea... on Heni's birthday!|
Friday, 30 June 2017
Daughter number two says that I am obsessed..... And I guess I am!
For many years I've loved to stroll along a beach and down a country lane looking for the perfect heart shaped rock or pebble... I always like to collect the best samples and decorate my garden with them... some dotted around hidden in the vegetation.... and others lined up on the fence and on planter boxes near the Sauna.
Some have even made their way in to the house to decorate rooms...
I'm not quite sure what got me in to it originally... the heart collecting that is, but the obsession progressed to the point that I now love to take photographs of the many hearts that I find in every day life and then post them all on Instagram!!
I've been taking photos of hearts for a while... but posting them on Instagram is a recent thing and over the last month I've had many people ask me how it is that I have managed to find so many different hearts?
A few months ago I gave a workshop on letting go of habits that don't serve you and on the cultivation of personal development and nourishment routines. One of the practices we touched upon was daily visualization... a way to see things as you would like them to be and not as they currently are.
Intentionally looking for hearts each day became a purposeful "exercise" that I decided to carry out as an object lesson to myself (and to everyone else out there) to put visualization in to practice .
So what are the lessons from my experiment and how did I find all those hearts?
For me, searching for and taking the photos was a way to prove to my self that whatever I looked for in life, I could and would eventually find.
Sounds simple right?....well it is and it isn't.
When you picture a heart in the morning ... it may not be "The exact" heart you find later that day.... but just the action of intentionally looking for a heart will open up your awareness... and eyes, to seeing them. Setting a goal and intending on finding and working on it, will put you in the right frame of mind to eventually be able to see it and achieve it.
My mind was focused on the goal of seeing "hearts" each day..... but it could be that you are looking for something else in your life. However, your eyes are closed to seeing it because you haven't yet primed them for looking for what you want. You may not have set your goal or intention to go out and actually find it and achieve it yet.
It's somewhat reminiscent of a story in "The Luck Factor" by Professor Richard Wiseman.
He tells of an experiment where a group of people are asked to watch a video on which they are asked to count how many times some people pass a basket ball to one another. At the end of the video he asks the viewers "Did you spot the gorilla?" no one did. When he played the video back to them they were surprised to see that there was a man in a gorilla suit who walked right in between the people passing the basket ball. No one had seen it because they were too busy and had been primed to look for the number of passes. They were blind to something that was right in front of their own eyes.
So visualization primes us to see... first with our imagination and then with our eyes....It makes us adept at spotting potentially missed opportunities.
Why not put it to the test? Try the visualization challenge on something perhaps small and insignificant to start out with. Like seeing if you can spot a yellow car everyday (that's easy by the way) or maybe look for a boat (if you don't live near the sea) ... maybe a little harder right? Be as obscure as you can and see what happens.
The key is to be open to whatever form it comes in... it may not be a "real" boat... it could be a toy, a picture, a photo, something on television, the word on a sign.... it will be there if you look for it. Give it a try and then report back to me how you got on (Here)
So yes... I guess I am a little obsessed....(but in a good way) .....
I suppose it became most apparent when everyone returned home one day to the ultimate evidence....
...vegetation spread all over the ground, me with shears in hand and the bushes in the front driveway "crafted" in to beautiful heart shaped topiary!
Visualization has been found to be helpful among athletes and in therapy situations for individuals to work on setting and achieving goals... but there are a lot of people who think that by just thinking about something it will magically appear.
Most often when we visualize something it doesn't just miraculously arrive out of nowhere.... and you have to be open to what I call a "potential heart opportunity"... hence the bushes!
That is.... something that requires a little more work and perhaps a tad more imagination on our part to tweak it into its full potential.
Visualization is only the start ....it's the picture in your mind to work towards, and the visual recognition that you have found what you wanted to find. It is knowing and seeing the potential in something and seeing how you can change it to become what you want it to become to match that internal picture.
Sometimes it does just shows up perfectly...pure inspiration and a picture of what we never thought was possible... then there are the other times you have to just work, work, work for both the vision and the result!
This exercise started out for me as a way of "intentionally looking" but it ended out as much more than that... it morphed in to each heart being a message to me of:-
If you look you will find
If you work you will achieve
If you try your hardest you will be blessed.
It was a lesson to me that love surrounds me everywhere and
that a tender higher being showers love on us each and every day... sometimes without us ever seeing or realizing it.
....and life is like a treasure hunt as I look for those tender little mercies and tokens of love strewn in my path.... and sent my way each and every day.
Until next time
If you would like to see some of my Instaheart finds from June please scroll below :-
|Taken walking around Tarn Howes, Cumbria|
|Derbyshire Junk shop find|
|Pullwood Bay floor (see memorial bench)|
|...another one from Pullwood Bay|
|Door Handle at Pullwood Bay|
|Tree stump in front of Heni's memorial bench!|
|Wood carving at Townend (National Trust Property in the Lake District)|
|...another one from Townend|
|cooking in the kitchen!|
|Door handle Berkhamstead high street|
|Garden gate Sarratt|
|Man hole cover!|
|Iron railing Near Grosvenor square, London|
|Iron railing, London|
|Lantern, shop at Hitchin Lavender fields|
|Ouside the Buiscuiteers, Knotting Hill, London|
|Moss heart on a rock|
|Lego heart.... made by the hungry boy|