Memories

When I think about Rhys, a lot of memories come to mind. Some, however, are more powerful than others.

Thomas the Tank Engine and the Magic Railroad
Rhys loved Thomas the Tank Engine when he was little. As he got older we bought him train sets that he would build in his bedroom, taking them down when he'd finished playing with them. We'd watch Thomas the Tank Engine on TV, before he grew out of it and into other shows like Power Rangers.

One Christmas we bought him Thomas the Tank Engine on video. It didn't take long before we had to play the video for him. Up until then Rhys had never sat down to watch anything that was that long. I sat down in the arm chair and he climbed up on my lap. For the next hour and a half the two of us sat there at watched the movie. Rhys's attention completely captured by it.

I don't think that either of us got so immersed in a movie again until Avatar came out and we went to see it at the cinema one Christmas. Walking out of the cinema I looked at my watch, turned to Rhys and asked him if he knew what time it was. He had no idea. When I told him, we were both stunned by how quickly the time had flown by.

Sitting in the cinema watching the trailers before the movie.
At the end of each trailer we would look at each other and then give a thumbs up, thumbs down or a shake of the head depending on whether we wanted to see the film or not. Sometimes if we really wanted to see it we'd be nodding our heads.

Mock fighting/pushing each other off the bed.
Finger Jab!

Rhys and I had a game we used to play whereby we would try to poke each other with out index fingers. Sometimes we'd use more than one finger if we were trying to keep count of how many we'd managed.

Invariably these turned into mock fights.

At times these fights would erupt while we were watching something on TV in his Mum and my bedroom. Very quickly things would escalate into wrestling matches where we would try and push each other off the bed, the winner being the one that could push the other completely off the bed, keeping just one part of the body on the bed counted as still being on it.

Watching him sleep when in hospital.
Over the years we spent so many times in hospital. Being in there was tiring at times. There's something about being in a hospital that simply induces sleepiness in even the healthiest of people.
At times Rhys would fall asleep, and I would sit in the room reading a book or doing something on my laptop.

During those times I would find myself watching him as he slept. So peaceful. Free for a short time from whatever had required a stay in hospital.

Some times I would take photos of him while he slept.

Yeovil Hospital - July 2016

St Margaret's Hospice

Frère Jacques
When Rhys was little and it was time for bed I would go with him. When he wanted me to stay with him until he fell asleep I would sing to him. Before too long we had a regular song that I would sing while stroking his head in order to relax him. Even when he was older I would sometimes sing it to him when he was struggling to go off, or his illness meant that he wanted me to stay in his room while he tried to get to sleep.

Although it started as a regular children' song I added my own verse, it went like this, the verses being sung over and over until he had dropped off.

Frère Jacques, Frère Jacques
Dormez-vous, dormez-vous?
Sonnez le matines, sonnez le matines
Ding dang dong, ding dang dong.

Little Rhys-e, Little Rhys-e
Time for bed, time for bed,
Lay your little head down, lay your little head down,
Time for sleep, time for sleep.

Rhys' Eulogy

Seventh of the first ninety-eight.

Seventh of January nineteen ninety-eight.

We’ve lost track of the number of times that Rhys uttered those phrases, or we said them.

Rhys had to deal with a lot during his life. He had Neurofibromatosis, Acute Lymphoblastic Leukaemia, a malignant nerve sheaf tumour in his stomach, a meningioma which resulted in part of his skull being removed and replaced with an acrylic implant, another nerve sheaf tumour; this time in his leg and then, as a result, tumours in his lung, mouth and finally brain.

He also suffered a major seizure some months after the operation to remove his first brain tumour.

During his life Rhys visited at least 10 different hospitals, underwent procedures and operations too numerous to count and received gallons of blood and platelet transfusions.

Rhys’ bone marrow transplant was the first time that we risked losing him. The seizure after his brain surgery was the second time. Eventually it was the mouth and second brain tumour that resulted in us losing him.

Despite all that Rhys soldiered on. I can probably count on the fingers of one hand how many times he complained, instead he dealt with everything calmly and with a smile or cheeky grin on his face.

Rhys was born on the seventh of January nineteen ninety-eight and his first few years were fairly uneventful. 

In the summer of 2000, everything changed when he was diagnosed with Acute Lymphoblastic Leukaemia. 

Despite the seriousness of his illness and the amount of time he spent in hospital we always tried to make life as normal as possible, but that would never be the case.

Rhys did so many things in his life, he had so many things he enjoyed doing and he never let the Leukaemia or tumours hold him back.

During the first weeks after he was diagnosed, and while we were still in Bristol he went, with a cannula in his hand and bandages protecting it to the zoo.

He went ten pin bowling on a Saturday morning, which was the source of our nickname Smiler for him.

He went swimming, once he had his Hickman Line removed, led to him gaining his bronze life saving certificate before he had to give up swimming due to the tumour in his stomach.

He went cycling, including taking part in several bikeathons.

He played pool, which he took every opportunity to play from the first time we stayed at CLIC House, through his many stays at Sam’s House and his brief time on Area 61 at Bristol Oncology Hospital. Something which led to his wanting to see a snooker final, something that he almost managed when he went to the World Snooker Championships in Sheffield and got a backstage tour and tickets for two of the round and quarter final sessions.

Rhys loved to cook, and made some lovely cakes for us all. He loved watching football and rugby, supporting Yeovil, Manchester United and Wales.

He loved Sci-Fi and fantasy, particularly Doctor Who, Power Rangers and Marvel and DC superheroes. Two of the last films we watched together were Guardian’s of the Galaxy Volume 2 and Wonder Woman.

Rhys had so many other experiences over the years.

Spending the morning at Yeovil Naval Air Station, getting to sit in the cockpits of several helicopters and flying the Lynx Mark 3 simulator, which resulted in him being given pilot’s wings.

Going to Barretstown in Ireland on outward bound weeks with other youngsters from around Europe with life threatening illnesses.

Being driven around Silverstone race track in a Ferrari.

After he received his terminal diagnosis he fulfilled the one wish that we’d never got around to, watching a Grand Prix. With the help of so many people who donated to a fund organised to help him achieve his final wishes he made it to Silverstone and got to see Hamilton win in style. 

The weekend was topped off with a surprise tour of the AMG Petronas team factory in Brackley. It was an amazing experience and he came home with some very special souvenirs as well as having been within touching distance of Hamilton’s car.

Even during the last weeks of his life Rhys got to experience some amazing things, Stormtroopers, owls, dogs. Life was never dull. The staff at St Margaret’s gave us the chance to spend quality time with him that we couldn’t have managed at home.

Rhys’ life was never a simple one but he made every effort to enjoy every moment of it, regardless of what he was going through. 

No matter what life threw at him though he always tried to help other whenever he could. He loved looking after the little ones, something he developed as a result of those early days in hospital. Playing with the younger kids in the playrooms often allowed their parents a chance for a few minutes break knowing that their child would be safe and sound and was being entertained. 

His experiences led him to decide that he wanted to work with children whether in a play group or as a hospital play specialist. Either of which he would have been brilliant at.

His gentleness, and the fact that he wasn’t the biggest of people, made him unthreatening to children who found him easy to get on with. It didn’t hurt that he had such a big heart, one that was filled with so much love for everyone.

His calmness and determination endeared him to everyone who met him. Rhys was the least threatening, most helpful young man you could ever meet. 

Even in his last days of life, his acceptance of his situation, and the peaceful and dignified way he dealt with everything was an incredible example. 

In the same way that Tracey and I were Rhys’s rocks, providing him with strength when he needed it, he was our rock giving us the strength to cope with everything.

Tracey and I, as well as everyone who ever knew him, have a Rhys shaped hole in our lives that nothing can fill. He won’t get the chance to do so many things now but is finally at peace and free from the cancer that affected him for most of it. He taught us so many things over the years, and even now he’s gone, his example can help us to live our lives to the full and remember that no matter what we go through we can still do amazing things.

Over-functioning

"Over-functioning: I won't feel, I will do. I don't need help, I help."

I've been reading Brene Brown's Rising Strong. I've read The Gifts of Imperfection and Daring Greatly. This is the next one in the suggested reading order. The quote above is on page 171 and when I read it, I immediately thought to myself "that's me. That is how I handle things."

Over-functioners are often the oldest child, and that is the case in my situation.

For the last 20 years I've been pushing feelings to one side in order that Rhys and Tracey got the support they needed. I've done my best to keep my feelings hidden rather than show them.

I've let other people's behaviour and attitudes wash over me.

Instead I've thrown myself into doing things, like running and triathlons. I've driven to and from Bristol whenever Rhys needed treatment. I've skipped trips away because I needed to be at the hospital with him when he's been ill.

Accepting help is something that I've also found difficult to do, even help from friends. I've spent so much of my life being independent, doing things for myself, providing for myself, that it's hard to turn around to people and say "I need help". I'm not the one who asks for help, I'm the one who helps. Even when I have things going on that mean I shouldn't be able to help others.

Over-functioning. That's definitely me.

Rising Strong - Brene Brown (Published 2015, Vermillion, ISBN 978-0-09195-503-8)

TGIF 20th May

A belated TGIF. I was busy over the weekend so didn't have the time to put fingers to keyboard.

Trust
On Saturday I once again put my trust in my hairdresser to work her magic. I had my hair coloured red with some blonde highlights thrown in for good measure. I also had my hair cut a bit shorter than normal. Once again Lou worked her magic and we were both happy with the result.

Gratitude
I'm grateful to the woman who gave me directions back to Yeovil on Sunday. I'd gone out for what should have been an hour and a half bike ride. Heading towards Crewkerne, I decided to take a back route towards Yeovil. Finding myself on the main Crewkerne to Yeovil road I chose a side road so that I'd have a quieter route to ride. Heading towards West Chinnock and Chiselborough I quickly found myself at a T-junction with not indications of which way to go. Fortunately, a lady came out of her house as I was trying to figure out which way to go. After asking for directions I headed back, initially on foot, but eventually on two wheels towards home.
In the end my bike ride took me almost 2 hours but I enjoyed being out in the countryside so it was a nice 2 hours.

Inspiration
Watching friends practice troupe routines for our up and coming show at Home Farm Festival inspires me. I'm so lucky to have some amazingly, supportive women as friends.

Fun
The two days that we spent at work marking IDAHOBIT (International Day Against Homophobia, Biphobia and Transphobia) were a lot of fun. Dressing up in colourful leggings, as well as tee-shirts, boots and earrings was different to my normal work attire.

Sometimes you just need the right words

I'm sitting on the bed writing this post. I'd been starting to write another post about over-functioning because it's something I needed to work through so I don't forget about it before my next counselling session.

I've been keeping several journals, some with daily prompts, one free-form. At the same time I've been reading Paulo Coelho's Manual of the Warrior of Light, I'm reading one entry each day, like a daily meditation prompt.

Writing my over-functioning post I was contemplating phoning in to work and taking the day off, finishing that post and then working on some of the exercises for my photography course. Something made me pick up the Manual and read the next entry.

"When a warrior is the victim of some injustice, he usually tries to be alone, in order not to show his pain to others."

The more in-depth text included:

"It is one thing to allow one's heart to heal its wounds slowly, but it is quite another to sit all day in deep contemplation for fear of seeming weak."

This is exactly what I was on the verge of doing. Sitting down all day, ostensibly to do course work, but in reality avoiding work because I'm struggling with some aspects of it.

Those aspects of the job aren't going to go away because I hide away for a day. They'll still be there tomorrow when I go back in to the office.

Rather than run away from things for a day or two I need to face them, deal with them and put them behind me.

The timing of reading today's entry was fortuitous because if I'd left it until later in the day I wouldn't have been able to do anything about it, just reflect on the fact that I'd done something that, most likely, wasn't in my best interests.

Not Immortal

I should have been doing the Immortal Half at Stourhead today. I went along yesterday and registered so I was all set to race.
My training has been going really well so I know I could have finished the race.
Nerves weren't too bad yesterday. Until we went to bed.
I woke up around 1 o'clock this morning and suddenly everything exploded.

The doubts about why I'm doing all this training and the races started. When Rhys died I set out to do some races and failing to do those ended up with me on anti-depressants and having bereavement counselling.

I've been doing triathlons for a number of years now and long before Rhys died my aim was to do an Ironman distance triathlon. It's still something I want to do but because I tied it all up with a promise to Rhys last year I still have part of that as the reason for doing it. I need to break that link or else I'm going to really struggle with doing what I've set out to do with my coaches.

On top of that I've been struggling with enthusiasm for things and feeling motivated. My training and rehearsing with the Burleskin girls have been things that have kept me going but other things just don't have the say interest for me. Even work is a struggle.

I enjoy doing things at work that aren't part of my "day job". I'm doing something really meaningful helping people and making a difference to their working lives. It's the "day job" that I'm struggling with. The work has gotten repetitive and isn't challenging.

Last week I had to go to the hospital with Tracey and in the last 10 minutes before I finished and left to pick her up I was trying to solve some problems and I found myself really engaged. Brain cells firing, knowing exactly what I needed to do. Leaving work I was actually frustrated that I didn't have longer to finish what I was doing. Just that brief amount of pressure made so much difference to me.

At 2:30 this morning, Tracey and I were sat in the living room drinking mugs of tea. I'd switched the alarm on my bedside clock off and when Tracey asked me why I said about not racing today. When I came downstairs for some tea she decided to come down as well because she wasn't sleeping at that time either.

For the first time in ages, as we sat there, I opened up and told her that I couldn't race today because I wasn't ready for it and that I was afraid that if I did race I would put myself back to where I was last summer and that is a dangerous place I don't want to revisit. I told Tracey that I've been struggling for weeks now.

Tracey suggested that part of the reason I'm struggling is because I've lost both my parents and haven't had the time to grieve properly for them. She said the way that she's dealt with losing her Dad, Aunts and Uncle is to tell herself that they are looking after Rhys. I do that too. I tell myself that Mum and Dad are looking after Rhys.

What I didn't tell Tracey is that I blame myself for not going up to Wales on the Friday before Dad died when he rang me to tell me he'd fallen again. Following the hospital's advice and agreeing with Dad that he should ring his GP and get them to come out and check him over was the worst thing I even did. I should have gone up to Wales that day. If I had I would have seen how he was and got him into hospital which might have made a difference.

The same with Mum. We saw her the day before she passed away but I decided to come home rather than staying there another day. If we'd stayed that extra night we'd have been there when Dad woke up to find that she'd passed away in the night.

The same with Rhys. I came home the morning that he passed away. By the time I got back to the hospital he'd died.

The times that all of them needed me to be there for them and I failed them. I let them down.

No matter how hard I try I'm never going to be able to get over the guilt about how I failed them. I'll never really be able to forgive myself. The only people that can forgive me are dead and there's no way that I can have their forgiveness in this lifetime.

I've made a lot of progress since last summer but it's a fragile state of affairs. I still find myself thinking of killing myself. Not in an active way but it wouldn't take much to push me over that edge. For so long I was really strong, I was there for Tracey and Rhys, I was the rock in the Cancer storm that battered our lives. I was a source of strength that Tracey and Rhys could rely on.

Now I don't feel very strong. I can barely hold on at times, just about have enough strength to get me through the day without screaming my head off.

For such a long time I knew who I was, knew what my purpose was in life was and now I don't. Now I'm having to figure out who I am and what my purpose is. It's a struggle. My mental health is a fragile thing.

I can hear Steph, my counsellor, and the questions she'd be asking me, the things that she'd be saying.

In the night I was feeling nervous, about the race, about the distances, about the swim. Those nerves magnified and kept me awake. I also found myself experiencing the feeling that I'm letting Rhys down again as well as my coaches who've worked hard with me to get me where I am. I found myself wondering why I put myself through this. The early mornings, the long days racing.

I've been trying to do things on my own. Trying to keep going and putting a happy face on for everyone when happy is the last thing I've been feeling. Tired, sad, depressed, bored, frustrated. I've definitely been feeling all that. Happy is something I've felt only occasionally, and then it's when I've done something that gives me a sense of achievement, and for me that takes a lot to do right now.

As much as I feel I've let my coaches and myself down by not racing, I needed to reach this crisis point, and it is a crisis point. I could easily have raced. Whether I finished or not doesn't matter. I'd have physically tired myself out by racing and I'd have struggled even more than I have been, but more importantly, I wouldn't have found myself facing up to how I'm feeling right now. I'd have carried on in the same way I have been until I reached the point that something broke, and broke big time. Now I have the chance to put things right before they break.

TGIF 10th May

I really don't know where this week has gone. It seems to have passed in a blur. This weekend is going to be an interesting one as I'm taking part in the Immortal Half at Stourhead. A middle distance triathlon. I'm looking forward to it, with a bit of nervousness. It will be an experience however it goes.

Trust

I'm trusting that all the rehearsals we are doing at Burleskin will get me ready to perform the group routines at Home Farm Festival.

Gratitude

I'm grateful for Batty. She's a great friend and I'm so lucky to have her in my life.

Inspiration

I feel inspired by Caster Semnya. Her determination to race despite all the efforts of the IAAF to prevent her racing against other women without giving up the advantage that nature gave her, is amazing.

Fun

I enjoyed swimming on Thursday evening. Even though the pool was crowded, especially my lane, and it was quite choppy because of the number of people swimming, I managed to complete my easy swim. I even had someone say that they thought I had good form, certainly better than other people in the pool who were frantically hitting the water with their arms in order to go faster and so causing a lot of splash.

TGIF

Thought I'd try out Brene Brown's TGIF activity.

Trust
I'm trusting that my coaches will get me where I aim to be in the next two years with my triathlons.

Gratitude
I'm grateful for all the help I get from my triathlon coaches and also all the friends I've made through Pink Kitten and Burleskin.

Inspiration
I feel inspired by my friends, who despite everything, get out there and do stuff.

Fun
I enjoy meeting up with people and having a good old fashioned catch up.

Emotionally Tired

Feeling oh so tired today. 

Not physically despite having got nearly every one of my training sessions for the week in. Maybe not always on the right day but I've managed to get everything in this week. I've even seen some huge improvements in some cases. 

I think it's more of an emotional tiredness, a weariness of the soul.

Outside the house children and adults are playing, the sound of a football being kicked comes through the window. I remember when Rhys and I used to play football, rugby and other games outside. 

Listening to the sounds from outside, the noise of people, the wind blowing through the leaves on the tree making them rustle. My mind goes to a dark place and I imagine myself climbing onto the windowsill, leaning backwards out of the open window and letting myself drop the ground outside. I'd probably survive the fall and end up in hospital, or with my luck, survive unscathed.

I won't do that though. I'll just let the tiredness wash over me for a while, get a nights sleep and see what tomorrow brings. A better, less emotionally exhausted one I hope.

Exploring my feelings about being let down by people

I became a Christian when I was a teenager. At the time I was in the Scouts and we used to attend a monthly church parade. One of the Scout leaders and one of the other Scouts lived a few doors from me and went to the church and so after a couple of months going to parade I started going along to church every week with them.

Over the next few years my faith grew stronger. I became friends with a lot of the youngsters who went to the church, some of whom were in the same year as me at school.

I got involved with different things at church, joined the choir; helped serve during the communion services; went along to the weekly youth club and when I was 16 I got confirmed.

Everything was going really well and then it all changed.

A scandal erupted involving one of the local cemetaries. A number of irregularities were found with some of the graves and burials and so a series of exhumations were ordered. In the course of the investigation bodies were found to have been buried in the wrong places, jewellery had been removed from bodies, and coffins had been smashed in order that extra coffins could be gotten into plots that had already been used for other burials.This was the case with my grandparents grave.

My family expected support from the vicar at church but sadly that wasn't as forthcoming as it could have been, especially as he took the position of defending the local council. Unsurprising as he was a local councillor himself.

His siding with the council eventually led to us no longer attending the church.

Around this time I started at Polytechnic and within 3 years moved away from home to start working in Portsmouth. Although I could have easily found a church to attend in Portsmouth I didn't bother. I didn't see a reason to, and other than weddings and funerals I didn't set foot in a church for a long time; it was over 10 years after stopping attending church at home before I once more started attending a church regularly.

When Rhys was first diagnosed with Leukaemia we decided that we wanted to give everybody something to look forward to, and so we began planning to get him Christened. At the time we weren't going to any churches and so started looking around for one.

At the second church we visited we found our new spiritual home and began to attend as regularly as we could while still dealing with Rhys' treatment.

Over time we settled in to the church. The people there were wonderfully supportive and it ended up being somewhere that Rhys would grow up in. I have a lot of happy memories of him at church, watching him with other people, seeing him helping out with the Junior Church when I was involved with it, and even after I was no longer involved.

When he died the church was packed full for his funeral. He was very much loved by everyone there.

Since Rhys died, the church hasn't felt like home anymore. I've been to several services, some Sunday morning ones, and, at the end, Wednesday lunchtime services. I've bumped into people from church in the street and supermarket and we've spoken, but apart from one person, nobody has checked in with me to see how I was doing.

I know if I was still going to the church it would be easy for people to ask how I'm doing but that's the thing, it would be easy. Checking in on me when I'm not going is a lot harder and only one person has made any effort to do that.

Just after Rhys died I read that people have a tendency to be there for someone who is bereaved for the first couple of weeks after someone dies but then their lives move on and that support dries up. Whereas for the bereaved life doesn't move on. That does seem to be the case.

When I returned to church after Rhys died it was a few months and it was to a service at the local community centre. Some people spoke to me but the majority didn't. It felt like, although I was there, I wasn't a part of it anymore. I stood around for about 5 minutes after people had spoken to me and then quietly left.

The same has happened when I've been to the church on a Sunday. Rather than going in to the church room after the service I've spoken briefly to people and then left straight away.

It's disappointing, I expected more from people I've known for almost two decades, from a place which, at times, I've been heavily involved with. I feel abandoned.

Part of that I think is that they've never had to deal with someone who is transgender, part is that they've not really had to deal with someone who has lost a child in the way that we lost Rhys. Supporting us throughout his illness was easy but supporting us after his death was something they weren't prepared for. And they were bad at it.

In the space of several years I've lost both my parents and my son. I have questions. I need answers, but nobody is able to give me the answers I need because the questions I have are tough ones.

Last year I did the Lent course put on by the church. It was all about spiritual health and figuring out your gifts. During the session on gifts we did a questionnaire that was intended to help you determine your gifts. One of mine was healing. I had to laugh at that because if that was the case then it hadn't worked when it came to Rhys. Finding out that one of my spiritual gifts was healing was adding insult to injury when he had barely been dead 6 months.

At the end of the course we were encouraged to meet up with someone to talk about what we'd learned during the preceding weeks. I arranged to meet with the vicar and we planned to figure out a date and time. That didn't happen, not because I wasn't open to meeting but because the vicar didn't come back with any dates and times. Weeks after he asked me if I still wanted to meet up. I was happy to but again nothing came of it.

Sadly, for me, that has been my experience ever since I came out as a trans person. People assume that I have a lot of support, and I do have when it comes to friends that I truly value. None of whom go to the church. They can't help me when it comes to spiritual support and the questions I have. That takes someone from within the church.

Shortly after I came out as trans, the cell group that I was part of decided that they could only support either my wife or I. As it was decided that I had enough support they chose her, and it was suggested I move to another cell group. No suggestions as to which one were offered and so I ended up not going to any. Support for my spiritual needs was therefore taken away with nothing to replace it.

I actually felt liked I'd been stabbed in the back by people I counted as friends. They're actions actually backfired because my wife eventually stopped going to the cell group. She'd only really been going because I went along as well. As soon as I wasn't going she no longer had the motivation to go and was happy to stay at home.

So how things have panned out with the church doesn't surprise me. It hurts that I've been abandoned after so many years. It hurts that people I counted as friends could treat me the way they did, because I'd come out as a trans person and decided to transition. It hurts to think that the only reason that people wanted anything to do with me was because of Rhys, and now that he's no longer here; only the niceties of social interaction result in people talking to me when they see me.

At one point I would have been angry about it but I'm beyond that now. I'm more resigned to the fact that people from church don't want to have anything to do with me.

Since Rhys died, in fact since I transitioned my relationship with God hasn't been the best. I'll talk to Her but I have also explored other spiritualities; coming back to God afterwards. My faith is still with God, I pray as often as I can, I talk to Jesus when I can. I still have a relationship but I don't have anyone to work through things like my belief that Rhys is dead because of me, because I transitioned. My belief that Rhys died because I transitioned and Rhys' fate was a punishment for my decision and actions.

Talking to God and praying doesn't give me answers to my questions, and doesn't make me change my belief that Rhys died because of me. Being left without a way to explore that is the hardest part of not having anyone supporting me spiritually because without that support it would be very easy to reach a point where I take action with fatal results.