The Journey – Reflections from the Saddle in the Lake District

 

A ride through beauty

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A Ride Through Beauty

Today I found myself riding through the stunning hills of the Lake District, bathed in glorious sunshine. It was one of those rare, perfect days where the air feels clean and the sky seems to stretch endlessly above you. As I pedalled up and down the winding country roads, a song came on my headphones—fittingly titled "The Journey."

As I listened, something clicked. I started reflecting not just on the ride, but on life itself—the parallels between the hills under my wheels and the emotional terrain we all travel.

Kaleidoscopic Ferns

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Noticing the Moments

So often, we focus solely on the destination. We aim to "get there," wherever there may be, without noticing the countless little moments along the way. But today, with that song as my soundtrack, I truly saw the journey. I noticed the ancient stone walls lining the lanes, the bright yellow poppies swaying gently in the breeze, lambs scattered across green fields, and birdsong weaving through the hedgerows.

Yellow poppies along the way

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Hills, Effort, and Momentum

The hills were tough. Some inclines were long, demanding more effort, more breath, more grit. Others were shorter, but steep enough to challenge even the strongest legs. But every summit brought a reward—a brief moment of ease, a downhill glide that reminded me of life’s fleeting reprieves.

If I timed it just right, I could coast halfway up the next hill on the momentum alone. Sometimes, if the incline wasn’t too steep, I could reach the top without pedalling at all. But the longer, seemingly endless hills? They took everything I had. Just like those drawn-out challenges in life, where you think you’ve turned a corner only to find the climb continues.

Bluebell Hill

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The Purpose of the Hills

And yet, those climbs—those relentless, breath-stealing ascents—are what train us. They shape us for the next challenge. You can't become good at hills without actually riding them. It made me wonder: why do we face so many "hills" in life? Do we really need them?

I think we do.

There’s a quiet satisfaction at the top—a sense of accomplishment, even if it’s short-lived. And the descents? They’re not always easy either. Sometimes they’re fast, maybe even a little scary, freewheeling at speed down an unfamiliar lane. It’s not as simple as hills being bad and downhills being good. They’re both just parts of the same journey.

Stone walls and tree arches

 

 

 

 

 

 

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“It's not the destination, it's the glory of the ride.”— Edward Monkton

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Present in the Pedal

What matters most is paying attention to the scenery as we ride.

Life is unpredictable—like a country road we’ve never travelled. It bends unexpectedly, climbs sharply, then falls into gentle slopes. And if we’re not present, we miss the beauty along the way. Our ultimate destination is the same for all of us. And the last thing any of us want is to arrive having missed the ride.

Passing by Lake Coniston

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Back to the Bench

Heni's bench

After my ride, I went to sit on Heni’s bench, overlooking the calm waters of Lake Windermere. I did a bit of DIY—re-attached the “Turning Hearts” medallion that had come loose during our last visit. I secured it, then scanned the little QR code, which took me to Heni’s memorial page.

Seeing it again reminded me of her journey. Of our journey. So many steep hills, some precious short declines, not much rest—but goodness, it was beautiful.

And that’s what I want to remember. That even when the ride is tough, the view can still take your breath away.

Jx

 

 Turning Hearts Medallion

 

 

Have you ever walked by a bench with a memorial plaque (or sat on one) and reflected about the person whose name was written there? 

What were they like as a person? What were they good at? What were their hobbies? Who were their loved ones (who are now sadly left behind)? If you are like me, this happens a lot. I see a name and try to image the person they were. A life lived and now over.... and loved ones mourning their loss. Beloved family and friends who want to somehow keep their child, mum, dad, grandad, husband, wife,  etc  close and keep their memory and spirit alive. 

When Heni died, if felt like not only her life had ended but the part of my life as her mother, carer and advocate had come to an end too. I wanted to be able to continue to talk to people about her and tell them how wonderful she was. I wanted people to ask questions about her and remember her like I still do... and for a while they did.... until they didn't. 

Unfortunately as time passes, other people around you get on with their lives (and rightly so) but the desire for your dead loved one to be remembered continues on within you.

Not long after Heni's death, we put a memorial bench in a really special place on the bank of Lake Windermere (In the Lake District/England) and from time to time I get a random email (via the blog) off someone who has been to that place... sat on the bench, looked out over the view and wondered about my daughter. It is so heart warming to read their messages of gratitude and peace (for providing a place for theme to sit, contemplate their life and that of their precious others) and of course to hear their thoughts on Heni.

 

 It's moving to think that they bothered to take time out to do a search, found this blog and got to learn an little bit about her too.

So you can imagine my delight when I learned about the TURNING HEARTS MEDALLION...

 

... a small aluminium square (that looks like slate) that you can attach to a bench, grave stone or memorial. It has a unique QR code, that when scanned with a phone camera, takes you directly to an online portal. Here you can learn more about that person.  

 

I wanted one!! So I ordered one as a gift for my husband this last Christmas!

Luckily we had already decided to spend Christmas and the New Year in the Lakes and so we were able to place the medallion on Heni's bench. Since then we have been uploading memories of her for others to see. I wanted to make it easier for people. Instead of googling, they can now just scan the QR code and be sent direct to Heni's portal. Here they can see pictures and videos of her and our lives... see her, feel her spirit and hear her precious giggles.

When you actually SEE the person online like this....it makes it REAL...they are no longer just a name on a plaque... they are a PERSON. You get to see and hear what others have had, and lost.... you get to feel the love and a sense of the lives they lived. It becomes so much more than a bench. It's really quite special.   

 We decided that next time we go up to the Lakes we are going to have another square plate ordered and fix the medallion on to it at the side of the plaque (rather than on it). I think it will look better and be a better fixation. 

This is still a work in progress. As we gradually come across pictures and videos that we can upload, the portal will have more content. Anyone visiting the bench will be able to see and learn more about our special daughter. It also has a link back to this blog so that they can learn more of her story on here too. There is no limit to the amount of content you can upload and other people can become a contributor to the site too. They can also add their pictures and videos and memories of the person. To me this is truly magical...

 If you would like to know more about the medallion you can follow this link:- https://turninghearts.com?sca_ref=5257224.I0sd6xR0w7

This has a unique link to me, and a small amount of any purchase of a medallion will paid to me. I see this as a way of being able to further the blog and make people aware of health and living, death, dying and supporting people during bereavement (I always keep a few free bereavement coaching/counseling slots for people who don't have the means to pay). I also will be able to maintain Heni's bench on an on going basis.   

I hope you will try it out by scanning one of the pictures of the QR code above... and go check out Heni's portal. Let me know what you think in the comments below. 

Do you think its a good idea? How do you think it will change someones experience of the memorial bench? How do you feel it can be improved?

I personally would love to know how many people scan and visit the portal after seeing the QR code on the bench. I'd love to have access to those numbers as a user.....because as a bereaved mum... it tells me my daughter still matters and people are still interested in knowing her...

jx

 

 

 

 

 

 

 

 

 

 

  

Last night I woke up in the middle of the night in distress, thinking about so many different things that are going on in my life right now and also many things that have occurred in the past. My mind was searching as to "why I feel the way I feel?"

As I lay there thinking and crying, remembering various events, I realised that I seem to feel this way over a similar period of time each year that passes..... and have felt this way over so many years that I've lost count! After hours of sleeplessness, It suddenly dawned on me that this was the time of year that we received a diagnosis for Heni before she was born....that she would have Edwards Syndrome, a severe chromosome abnormality with bleak prospects of life expectancy. It also dawned on me that this was the time of year that I received the news seven years previous to that, that my father had esophageal cancer and would likely die very quickly. To add to that It is also the time of year that I was given the news that my mother was on a quick decline and to return home as she was about to pass imminently. 

The body remembers.... even if the mind sometimes tries to push it out of consciousness.... it gives us signs and hints as to what is still left unhealed..... and last night many things returned to consciousness and I felt validated that the reason "why" I was feeling what I was feeling was the remembrance of those anticipatory grief "triggers" that had been just simmering in the back drop of my mind still awaiting processing.

Grief is by nature, complicated. Sometimes we deal with the emotions that emerge and sometimes we push them back down ready for them to reemerge at a later date further down the line. Sometimes we recognize the feelings for what they are and sometimes we don't know why we feel the way we do. There are many things that can side track us in every day life from our healing and there are old wounds that come up and sometimes hinder that healing too. 

They say that time heals.... but it doesn't...it's not just time that counts,  it's what we do with that time that matters. It's HOW we deal with the emotions/ feelings/ pain that is important... it's the WORK we do to overcome it, because without that work things stay put and time alone does nothing. Last night these thoughts came up ready to be healed.... and more work is needed and ahead. I've done a lot of grief work over the last five years both by myself, with counseling and as I studied to become a certified grief educator (Grief.com)..... but it appears that there is still more left to do.

 

 

Grief takes time. It is the processing of information, feelings and emotions, the expression of the love that we had for our loved one...love left with no where to go anymore... a redistributing of that time , attention and space that our loved one occupied while here with us but is now left vacant. When they leave we need to learn how to grow life around that gaping hole that is left, and surround if with something different. 

it takes time to untangle the many things that come up and at times others can judge this process ...they can tell you that its taking too long, that you should be done by now and that you should be over it. You are never over it! It's like telling someone to stop loving the person who is no longer there. Yes, you move forwards but you take that person with you in your heart and find ways to honor them and keep them a part of your life even if their life is over. 

 So it's somewhat conflicting when the DSM is now categorizing "Prolonged grief" as a disorder... a thing to be medicated and treated. So what IS actually a natural process of coming to terms with loss is now being pathologized and at the same time will become stigmatized. 

I just listened to a discussion on line about this subject and I would highly recommend it. Grief experts discussing the downfalls of the DSM and confirming that grief is a natural process most of the time. Yes, sometimes people do get "stuck" in their grief but there are other ways of becoming unstuck without the extra stress and shame that a diagnosis may bring with it and the pressure from family and friends to push you through grief quicker than you can process. Not to mention the numbing that can be brought about by medication that stops that unraveling process in its tracks. Also all medication has side effects that need to be factored in too. Feelings need to be felt, moved though and expressed and as David Kessler is quoted as saying..."If you have 10,000 tears to cry you can't stop at 500", nor should you be made to. Each one needs to come out in it's own time and in it's own way. Have a listen  to the discussion below..... you may just realize that prolonged grief is just plain old NORMAL after all!

 

Until next time 

Jx

 

 

 

                                          Meditations on Grief

 

As many of you may know by now, (from reading the blog), we lost our daughter just over four years ago and life since that point has been a process of grieving and finding new meaning and purpose. Grief is a journey that doesn't end... the pain of the loss doesn't just go away. However, It does get more manageable and gradually bit by bit life starts enlarging around the pain in the middle. 

Its a tumultuous journey of ups and downs... at times you can grieve openly and other times you may feel like others just don't understand and you hide it away, trying to figure out what is acceptable or appropriate. You feel broken... but you learn that you are not broken... and you not only GO through the grief (as David Kessler, a well known grief expert puts it) but you GROW through it. You learn that you can't "DO" grief wrong and that its very individualized. 

I love what David says, when asked, "How long do you grieve?" His answer is so to the point..."How long is the person dead?".

I also find the story that he tells... of how buffalo's run in to a storm to shorten the time that they will have to spend in the worst part of it. Most people do the opposite....people run away from grief and try and avoid the pain and emotional storms and in doing so often elongate the time that they spend in its epicenter. As the sayings go... what we resist persists! and "you can't heal from what you don't feel" 

 

Lockdowns and Liberations

I just literally almost had a heart attack! 
I haven't logged on to Blogger or on to Henibean for quite a while, but for some reason today I tried to access it through my Instagram account and it said my accounts didn't exist anymore! I couldn't find them anywhere.
I can't begin to tell you how my heart flipped upside down, inside out and fell into the nethermost parts of my stomach. The hours I have spent writing, musing, creating.... during Heni's last few years of life... the therapy that it was for me... the memories it contained... the source of hope that I pray it gave/gives other families in the same situation as us... all gone?

 The prospect that it had ceased to exist made me panic, search frantically through the web...and fortunately, the heart attack was averted and was replaced by a skip in beat as my blog miraculously showed up before my eyes again. Phew! 
All of a sudden (amid the eagerness to find and keep what I had created), a desire to write something came leaping back again. Maybe nothing huge or grandiose but just a desire to share a little right now and to reach out and check that you are still there and that you are ok?

It's been a weird, surreal, almost dystopian time in the last few months hasn't it?
 Just when I thought that we personally were nearing the zenith of yet another challenge allotted to us after having to move out of our home for the last 15 months (due to a water leak) and continuing with the ever onward ups and downs of the grief journey... something else hits us... ALL of us, and changed the lives that we currently live and know.

I'm no stranger to change. I'm well acquainted with challenges and bad news. Hey, I'm even best friends with self-isolation and can keep my own company rather well. There were often months at a time that I would stay home with Heni during her prolonged illnesses and shut the rest of the world out... living in our own little lockdown bubble.  When we ultimately emerged from our own final "Heni bubble" we each had to work to adapt to a new status quo, look at what we had gained and lost... and learn how to live without her and enquire "what next"?  

....and so although lockdown with Covid19 has had its unique challenges for us personally,  I'm cognisant of the fact that all lockdowns are not created equal. Some individuals have gained extra quality family time, community spirit, and a virtual couch to 5K medal... others have lost jobs, hope, and loved ones. Some have worked their socks off as key workers while others have caught up on sleep and self-care that they maybe haven't had for a very long time.  


On one hand, my lockdown has consisted of long daily walks, bike rides, runs, pilates, food, sleep, reading, virtual physio consultations with my patients, studying, tv, social media, gardening. However, this has been intermingled with boredom, feelings of displacement at not being in our own home and frustrations at our insurance company for being so useless on our house project. Also, the lack of clarity on the COVID situation and the seemingly inconsistent stories we have been told along the way has brought a certain level of distrust in what we are being fed by media. Mainly I've been regrouping and trying to get some much-needed energy back after what has seemed to be a very long slog of difficulties.  

 
Here we ALL are... people from all corners of the globe in some stage or other of lockdown, and soon, potential liberation/emancipation.   We are all going through different trials and "personal learning experiences" right now and we are all coping in different ways. When life resumes again (and it WILL), we will do it in our own way and in our own time and style...  Some will emerge out of lockdown with a new direction and skillset, others with new talents and motivation. Some will emerge more emotionally battered, or even physically ...with bruises and broken marriages. BUT hopefully, the liberation that we will all feel will be a little more than the ability to go out of the house and be outdoors and exercise whenever we want. I'd like to believe that we will all come out of this with somewhat more.  
Regardless of how we emerge from our governments' lockdowns that have been imposed upon us, I'd like to think that we will emerge having changed for the better.  To surface with greater clarity for the future and having maintained our freedom to choose our way and live our own truth. Mostly to have gained a greater capacity to control our individual reactions to adversity.  

I've always loved Victor Frankl's book, "man's search for meaning"  and some of the quotations in it ring true in many circumstances... of both life and death, lockdown and liberation. So I thought I'd share a few with you below.

        “The meaning of life is to give life meaning.”
                     ― Viktor E. Frankl

So I guess what I am trying to say in a roundabout way is that although we didn't choose lockdown  (like we don't choose many challenges in life),
we all possess a capacity to choose how we will respond right now... and hopefully grow from it eventually as a result. I'd like to think that no matter what heartache or difficulty it may have brought for you personally, that you can know (like I know from my own previous learning with Heni) that there WILL be positive things that come out of it. All we have to do is look for them and wait while we each work to adapt to a new status quo, look at what we have gained and lost... and learn how best to live as we look to "what next"?  


 

I would be interested to know what you have done during your lockdowns and what they have taught you? What would you like your "new normal" to look like when you are finally liberated? I'd love you to message me on Facebook or Instagram or leave me a comment below. 

I  am feeling so thankful that the blog still exists and I hope I'll be back writing again real soon ; )

Know that I'm thinking of you all...until next time...

Jx

Pain - self education resources

                                                The above pain scale is by Allie Brosh




I promised a while back that I would share a few of my favorite "go to's" that I've found useful for patients to learn more about pain and how to get rid of it.  
 

Here are a few below:-


1) Heal your pain now" by Dr Joe Tatta DPT, CNS

Part of my role as a physiotherapist is to explain pain and work with my patients to help them to reduce/remove it from their lives. When I came across the book (below), I was really pleased to see that it was a comprehensive "homework" resource that I could advise them to read between sessions.

PAIN.....The first real episode was after lifting far too much weight during a squatting session when I was 15... the second major one, years later, lifting a patient who decided they didn't want to stand anymore. After numerous sports injuries, four babies and 21 years of lifting my disabled daughter (HENI) my back was pretty much shot to pieces. I, like many of you have suffered chronic pain for years. Even though looking in from the outside I can still run and exercise etc, there hasn't been a day in a very long time without feeling Pain. I understand pain intimately, (experientially as well as academically) and I've worked hard (since Heni passed away) to reduce it, and hopefully eliminate it from my life once and for all.

 

A New love?

It's been a while since I had the desire to write on here..... but something just keeps pulling me back. Maybe my reluctance thus far stems from the fact that Heni (who my blog centered around) is no longer here. It's a year and 9 months since she passed away... and yesterday, the (19th of July) we celebrated what would have been her 23rd birthday at the beach.

Henibean was originally written around my life with Heni ...a Trisomy 18 warrior... the whole blog was pretty much a record of how I tried to keep some semblance of health, sanity, creativity and balance in my life and family throughout her last few years of life.

World Trisomy 18 awareness day

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.

One year on...

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.

Healing HEARTS

 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:-

Heart Photography and visualisation

 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

Moments of Joy

It's been a while!
I have to admit that I haven't felt much like writing recently, as grief does interesting things to your priorities and to your brain! On the times I've wanted to write something, I haven't had the brain power to sit and concentrate... or other things come higher up on the list of current necessities and blogging gets put on the back burner. Then, there are days that you just have to go in to survival mode when you can only do the basics and the desire to blog is a far distant thought.
It's been a rough few months with many ups and downs...  and although the "ups" haven't been as up as I would like them to be..... I have tried to be diligent and consistent in plodding ever forwards, learning how to create a new, different life without Heni. It's often been a struggle along the way to search out those moments of joy that I mentioned back in a post  I wrote just before  Christmas .
Those moments of joy ARE there... they just take some searching for right now.  It's a purposeful activity. One in which if you engage in, opens your eyes and broadens your view.
Those moments often arrive when

Memorial Bench

A week ago today we got back from our yearly family trip to the Lake district here in England. It's one of my favourite places to visit... it's such a beautiful place that it draws us back time and time again.  When Heni passed away last October, we all knew that we wanted to return this year on a "memorial trip"... put a bench in a special place, and scatter some of her ashes on one of our "Heni" walks we do each year.

It took a bit of time and effort researching how to go about it all . As I approached a number of organizations to see what could be done, I felt repeatedly dejected to find that our idea was just not looking like it would ever happen.

#The Prince of Peace

If life seems to be out of balance and everything is going wrong... or everything seems to be out of kilter.... I invite you to take a look at how you can regain greater balance and peace in your life by clicking on the above video link.  

Two years and counting....

 Henibean is 2 years old today! 
I know I've not been as diligent at writing over the last month... it's been a difficult time... and I haven't felt much like sitting and tapping out my thoughts on the keyboard ....but hey this blog is about balance ... and you have to cut yourself some slack sometimes don't you? 


A lot has happened in the last two year and today I wanted to

Re-purposing... your life

 My Craft room/office has been upstairs for a few years now...
I was happy there and had no reason to be anywhere else. I loved the vantage point and the view over the garden it provided me with and enjoyed the peace and quiet ... a "Sanity Space" to write and create. But things have changed... as they always do.

 Since Heni died, I have had the difficult task of walking numerous times daily by her room and seeing everything left as it was... shelves teaming full of " friends" that she loved....

My Headspace journey...

 
Last post I mentioned that I would share a tool with you that I've been using on my journey through grief... and so today I am going to tell you a little about my experience with Headspace.

I originally came across the app about a year ago after reading a number of books on Mindfulness. I downloaded the app on my phone, and then did the free mindfulness based meditation sessions on the basic ten day program ...TAKE 10 (ten sessions of just ten minutes a day). 

Back to Basics...

I know a lot of people who are grieving for loved ones right now... and I'm sure that there are even more of you out there who are dealing with it too. It is a life passage that most of us face at some point.... and thereafter on more numerous occasions as we age and see loved ones pass on. It's an experience that is similar.. but also very different for each person, however, there are a few common things that may help "everyone"  while passing through the hurt and healing. 

2017...relaxing in to your own pace... of grief....

I wasn't really looking forward to Christmas this year... but I did my best on the run up to the big day to prepare for the rest of the family so that we could all hopefully have a nice relaxing and somewhat "fun" time together...However, It's been difficult to get into the jolly mindset when most of the time all I feel is a sense of grief. 
I haven't felt much like writing over this period either....mostly I've just wanted to hide away, be quiet and contemplate... but I did try to spend time with my lovely family ...