Old grief in a New Year

What does a New Year look like when part of you died 3 years ago. In 2020 my youngest daughter Lydia, the sweetest little blessing in my world left us mourning and yearning for her. Since then, only part of me goes into each New Year, each Christmas, each birthday. New Year in particular reminds me that part of me is still in 2020, I can’t comprehend that it has been over 3 years since I held her.

I don’t need other people to be sad or continually sensitive around me, the painful reality lives within me. There is still a part of me in the present, still a part of me that wants to enjoy what is going on in life at the moment. I love and adore my wife Bethan and my eldest daughter Caitlin, and they need me in this year, with them. Lydia loves me, she loves her mother and her sister too and she will want us together, she will want me here for them.

If the question is, how do you move on from child-loss? Then the answer is, you don’t.

You don’t move on, you change, you focus, you try.

Have patience with parents who are grieving – it seems to us that the world has moved on while we can’t. It seems people want to know how we can move on – even an expectation that we should have moved on by now. We’re able to enjoy celebrations but life events always need a moment to remember that our child ought to be here for this.

Sometimes the expectation of continual positivity and optimism is too much, sometimes we just need to be sad, sometimes we just need to remember, we don’t need others to be sad – we just know that a part of us isn’t here -part of us is with the one we long to see. We’ll make the best of a New Year, but we’ll need moments to go back in time.

The Gift of a Declutter.

With Christmas and New Year over, the focus switches to making 2024 a productive year of growth and good choices.

As can be typical in a household where ADHD and Autism is spread across the family, we can go a bit overboard on buying, putting up decorations and making too many plans. We love the festive season and all that comes with it, but this also means clutter, and overstimulation.

As the years go by, we’re getting better at planning this period as a family every year. Along with all of the pre-Christmas excitement we experience a lot of anxiety around items coming into an already full and overwhelming household which can lead to very emotional struggles and sometimes arguments.

There are three important stages of decluttering that help us through this period giving us the best gift of the period – Clarity, and the ability to enjoy what we have. The decluttering stages look like this:

1. The Pre-Christmas Declutter

This is one of our most important preparations for Christmas. This helps us to get through the season and enjoy the big day. Get rid of anything that is lingering or hanging around – remove anything that is likely to be replaced at Christmas – make space for what is inevitably going to come and fill your world.

2. The next declutter is just after Christmas

Now we know what we have received. Do the gifts replace anything? can we get rid of something older to make way for new things?  Enjoy new clothes – sell or donate old ones, make strong decisions on old items if you need to find space for new ones.

3. Now we’re here, in a New Year

HOPEFULLY we haven’t already become overwhelmed and overstimulated and had arguments about it all (we have but, probably less disagreements than we would have had). It’s time to get clear for the year – declutter the Christmas decorations as they’re going away, things we didn’t use, things past their best etc. The house – does the kitchen need rearranging? – the cutlery drawer lives in the back of my mind, straighten that out – we’ve got far too many random mugs, they’re not coming to 2024 with us. Now is the time to straighten the lines.

Having a new year and new things and a new purpose is all very good, but its also an important part of the process that the old gets stripped away. Things like grief, trauma as well as ADHD and Autism can make this really difficult but the alternative of hanging on to everything is far too destructive. Here’s to a New Year of clarity, decisiveness and hopefully, peace.

Coughs and sneezes spread COVID19

This week, the first case has been confirmed in our city of this new strain of coronavirus, and at the same time the powers that be have said that if it becomes a pandemic there may not be treatment for people that would be considered less likely to survive – that is probably our little one.

Frightening right? This thing which can spread so easily is not fatal to most healthy people so they don’t take it very seriously but to the people they can easily spread it to it is fatal.

It had already been a dangerous winter before the outbreak and our family have rarely left our house together over the winter months.

Those are just the harsh realities of sickness, this isn’t anything new, it is the same situation with flu.

Where I really struggle is when I head out to a supermarket to get supplies and somebodies child is walking around coughing and sneezing without covering their mouth and with the adult never advising them to do so (when did we stop teaching this to our children?).

That is difficult to put up with knowing that they could be carrying a sniffle which could leave my child in intensive care for which the germs are being spread all over the packets and products in the store…. And these are just the ones I witnessed.

What is unforgivable though is that I see fully grown adults doing the same thing on a regular basis, how wonderful it is to see an adult belt out a number of uncovered, open mouthed coughs directly towards all the food products just in front of them.

Is it ignorance or selfishness, I don’t know but it certainly tests my patience.

It is crazy that the spread of dangerous diseases is so easily stifled by following a few steps which I’m sure will be shared far and wide but I’ll sing that same song here because people don’t seem to get it.

WASH – That shouldn’t really need explaining but to some it does, which is worrying. Wash your hands (properly), ALL THE TIME. How ever much you’re doing it… it’s not enough.

COVER YOUR COUGHS – and your sneezes too. Absolutely incredible how many people don’t do this. The best way is to use a tissue, bin it and wash hands.

However, it usually catches us unawares so if you can, cough or sneeze into your elbow rather than your hands (wash that area too when you can but you usually get sick from touching your face with your hands after coming into contact and spread through handshakes and touching surfaces).

STAY HOME – This is a big one, so many people carry on with life when they’re sick thinking that they are brave and no nonsense, but they are putting lives in danger and it is selfish. Stay at home and get it cleared.

One of the main pieces of advice when this latest sickness outbreak came out was that if you think you have symptoms DO NOT LEAVE YOUR HOME.

Contact NHS direct or your GP over the telephone and if your symptoms match, they will help you in a way that stops the disease spreading.

Since then I have spoken to friends who told me they went straight to A and E because they thought they had symptoms and I’ve spoke to healthcare workers who said they were struggling to keep up with the people coming in who think they have COVID 19.

So, with this highly infectious sickness worry they go to the local hospital where all the sick, elderly and disabled people are, because they didn’t think beyond themselves.

Now that its in our city we’re pretty afraid, strongly considering pulling our eldest out of school and staying at home unless completely necessary as a death sentence for our youngest is not far from home.

Hopefully this fright will come and go quickly but there is always something new around the corner as well as the ever-prevalent flu.

Hopefully this will be a wake-up call for many people.

Stay-safe

I know you didn’t ask… but it’s a feeding tube

This week is tube feeding awareness week 10th – 14th February.

I know, every week seems to be an awareness week for something, it even seems that some awareness weeks overlap one another, unfortunately this probably causes the opposite of the desired effect as people take less notice of one awareness week in a sea of many.

However, the awareness of tube feeding (or at least the tube itself) can often be rather abrupt for many people.

Our Lydia is 4 years old and still has an NJ tube which is on her face and goes in through her nostril, she is much older and has had this type of tube much longer than most children who have an ongoing condition that requires tube feeding.

Usually she, as with most children with these conditions, should have had a tube surgically inserted into her torso – a surgery that we are waiting for, would be better for Lydia and which makes tube feeding a little more inconspicuous too.

This is why we often see people made abruptly aware of her feeding tube as it’s right there on her face.

Sometimes people stare, sometimes they have an initial look of shock followed by the laser stare in any direction but ours and then there is the absolute horror of people when the children they are with tilt their head and say…… what’s that tube thing?

Amazingly the best reaction is generally that of the children – asking an honest question.

Does it affect me?

If we’re honest, that seems to be where genuine awareness begins or ends, people only REALLY care if it affects them.

With tube feeding this is often the abrupt introduction people have to it.

There are so many illnesses and difficulties that can require somebody to use a tube despite never having had any struggle of this nature in the past.

So, the reality that anybody at any time could have an NG tube fitted on a hospital admission means they could learn about tubes having seen one on their loved ones or having had one themselves for a short time.

Some people have these tubes all their life, through their nose, through their belly, going into their stomach or even going just beyond the stomach.

They help with feeding or sometimes they’re even just fitted to help drain your stomach and if people were more aware of them, not only would it help people like us – so we don’t have to deal with the reactions but it would also help people when in the future if they or someone they love need one they won’t panic.

Is it that big a deal?

Well, in a way yes. It is vital to my little one as it’s her lifeline, it’s how she feeds but, in another way, no.

We don’t really notice it anymore, we notice more when (for short periods) she doesn’t have the tube in much like the effect of a pair of glasses.

When I see people with the look of absolute shock on their faces I often think – that’s what I must look like when I see people with those daft wireless earphones that look like the head of an electric toothbrush.

I honestly think that there are many more silly looking accessories that people choose to attach to their face of other places than a simple and useful tube.

It’s not because she has cancer

There have been many misconceptions when it comes to the tube but this is probably the one we hear most often.

Of course feeding tubes are used by some patients when they are fighting cancer but they are used for such a broad spectrum of reasons/issues.

This goes back to the “does it affect me” portion. Cancer of course is a huge fight and therefore affects so many more people, which means there are so many more adverts and more charitable giving goes to cancer charity than any other charity type.

Basically we’ve all been impacted by cancer, either directly or through one of our loved ones – hence we’re all aware of it and motivated to know more and do more.

That is all wonderful but there is still a little bit of the selfish – if it affects me then I care about it approach.

Some take home points

1. Tube feeding isn’t that weird; we’re made up of all sorts of tubes anyway.

2. Ask questions, we actually appreciate how honest and inquisitive your children are.

3. Enjoy food, in a world where we’re all becoming afraid of what we eat, take time to realise just how much you would miss it. It is a heart-breaking change giving up on feeding your children in a conventional way and really makes you consider what’s important (The “breast is best” arguments etc become almost pathetic) so just enjoy what you can enjoy and be aware that many don’t have the same blessing.

Feeding tubes are a great and very important help, even if none of us really want one. The only choice we have is to own it!

Keep going you Tubies out there.

Why is it so Hard to Talk?

There are a lot of emotions and stresses when raising a child with disability, its good to talk about these things and get them off of your chest – so why is it so hard to do it?

My wife sometimes tries to pry out what I’m thinking and feeling as we go through a difficult situation and even when I feel like I’d like to talk, I just can’t let it go.

Maybe it makes us feel weak to talk about our struggles, I tend to think I just like to get on dealing with it rather than talk about the struggles.

As a matter of fact, I’m probably more able to write these things in this blog than I am to express them to my loved ones.

I like to carry the weight

I don’t like the thought of dumping all my baggage onto my wife or anyone else but as we know the weight of it can crush you.

We’re seeing all this mental health information which talks about discussing things and not bottling it up, it all makes sense but its not so easy to do.

I can’t let it pass my lips, I’m tired, I’m struggling, I feel abandoned and let down by those I thought would be there, I feel like I’m letting my own family down too.

I’m struggling from lots of angles but ask and I’ll say I’m good. I’m not good, I’m ruined. I guess the feeling is, nobody can do anything about it so why bother talking about it?

Robin Williams

He was one of many high-profile cases that have brought mental health and suicide to the forefront of our minds.

Of the many cases through my generation, we were particularly pained by seeing the man who made us all laugh and seemed to be constantly on top of the world, in a secret turmoil that lead to him no longer wanting to be alive.

Of course, he had a particular condition called Lewy body Dementia which had symptoms of depression but the sadness of the happiest man on earth had a big impact.

Seeing these things makes us aware of the need to express what’s going on, however, there is still a problem knowing what to do with it, to actually break the silence.

This won’t be a post where I provide you with an answer as I’m still figuring it out myself but of course there are many charities and people you and I can talk to.

I don’t know why it’s so hard to talk, I know that my longsuffering wife needs to patience of a saint to put up with me struggling and being grumpy when I can’t say why I’m grumpy.

I’m trying to talk more, I guess that’s all we can do.

Health Service Sexism – A Father’s Power of Invisibility

After a few weeks in the main hospital, Lydia has been well enough to be transferred to our local hospital where some nights we can have our community carers to come and sit with her overnight while we go home and sleep.

This happened last weekend and we were home for all of 2 and a half hours before the Registrar, nurse and carer weren’t coping with her needs and we were called back in at 1am.

The evening on the weekend isn’t great in here as there are no consultants around and the Reg isn’t quite up to making the required calls.

They’re very nervous about her.

As we arrive, we are out of the cubical and in high dependency with everybody at panic stations.

The room is full of anaesthetists, physios, registrars and nurses (all female) but Lydia is all settled – she basically had some secretions move in her chest and block her breathing, it’s not worth a panic, you just get it moved out with movement and suction.

Hi Mum

We are given a breakdown of the situation as we arrive, then they ask my wife questions and hang on every word she says – as they should, she is absolutely awesome at what she does.

However, anything I add seems to blow away with the wind as their gaze returns to my wife or something else before I even finish my sentence. Maybe its all in my head

So, what do you think has happened Mum? Why would she have done what she’s done tonight? – that’s ok, she is a good person to ask.

We both agreed anyway, she needed more physio input than she’s getting, something we said previously but had been ignored.

So, a discussion begins about the physio input and they’re all asking my wife again.

Like any good team, my wife and I tend to have more expertise in different areas and physio is usually my area mainly so as all the questions are given to my wife, she turns to me and asks what do you think regarding what we should do about physiotherapy?

I had barely finished speaking about what we should do over the next few hours before the lady anaesthetist chimed in with “WELL MUM KNOWS BEST WHEN IT COMES TO PHYSIO”!

I look at her thinking…. Have you just been through a tough divorce or something? Is there something about the male opinion that is made null and void by testosterone? – it’s not the main issue right now so I try to ignore it.

In comes the consultant

She has been called in from home to see Lydia too and gets an update from the other professionals and seems to see that there was a bit more of a panic than was required too.

She eventually came over, squatted down looking directly at my wife and completely away from me despite being sat next to her. She asks the same question, so Mum, what do you think happened?

I’m starting to get the picture now.

They don’t seem to recognise what they’re doing despite the fact my wife is almost constantly rebounding their questions toward me as she values my input but again, each time I speak I get a polite glance as I say something but once I’m finished it’s as though I disappeared again and what I said was spoken in Cantonese.

This is something many fathers have told me about and some even stay away from the wards because they can’t cope with being ignored by the professionals when they’re in the hospital while they hang on the Mothers every word.

Those men who are no longer in a relationship with the mother often cease to even be treated like the child’s father – It all leads to asking; why do many health professionals look at Fathers in this way?

Dads not around

Maybe that’s the first excuse that comes to mind – most Dads work and aren’t as involved, etc, so Mum is the go-to person.

To be fair, many of the nurses and doctors know us well and they know just how involved, trained and capable I am as well as my wife and so they pay attention to what we both say and the people I mentioned above were new to us.

So, the first problem is, don’t assume, the Dad may be just as involved as Mum like I am.

The other issue is that even if Dad does work and isn’t involved as much – he is a caring parent and he still knows the child better than you do.

He is still an expert and he is the one that will give his time, sweat, blood, bone marrow or vital organs for the child.

He’ll run through brick walls and turn into the Dad from Taken if anybody tries to harm them.

That’s why he goes to work in the first place…. Because he cares – don’t treat him like a nobody.

This experience of being called out of bed at 1 am, rushing into the car and racing down to the hospital all to be treated as though I wasn’t in the room reminded me of what it was like when we were first in the hospitals and I had that invisible cloak.

Don’t ignore Dad, he knows his children in a way that nobody else does or ever will, that’s why a Mum and a Dad are always needed to produce them -God’s design for the perfect team!

Going Back to Hospital

It hasn’t changed!

Lydia is poorly again, and the hospital hasn’t changed – after our longest healthy and hospital free period with her of 10 months she picked up something that would leave you and I with a cough and a bit of a groggy feeling for a week.

However, the same thing leaves Lydia on life support in PICU (as she is now just over 2 weeks into admission).

It has been a frightening time as we feared the worst, but she has been improving and they’re talking about removing the life support tube today or tomorrow.

We’re here enough now to know pretty much all the nurses and doctors very well, as I said to one of the nurses today that we see them far more often than we see most of our family and friends.

It never gets easier seeing her so poorly but as we’re here so often it gets easier for friends and family to ignore that she’s poorly and just how hard it is to be in this situation.

It makes me think as I see children and their parents who have never been in this place before are surrounded by visitors, it seems many assume that we know what we’re doing now so we’ll be fine.

As a matter of fact, it gets harder doing this as the shock and support dwindles and the loneliness and difficulty of the situation take its toll on you physically and mentally.

One thing that is new, Ronald McDonald house

Its been here for the last 2 – 3 admissions actually but it’s still new and very helpful to have a nice comfortable home away from home, however it brings its own irritations.

It’s a house full of parents of sick children, some people are very friendly, some are “experts” because they’ve been in for the last week and some are just outright odd – they steal people’s food, don’t consider anyone else and are on the brink of an ASBO.

We’ve stayed in these houses in Bristol and Liverpool and they’re all very similar people but it’s a good and very helpful charity.

Although all this is in place we’re reminded of how hard this life can be, seeing your child sick, speaking in medical lingo every waking hour, being torn between home, hospital, school and everywhere else, living with no privacy in a regularly, randomly inspected room and generally not sleeping as you go between concerned and exhausted but still struggle to pass into sleep.

Crippling fear

There was a day or 2 where we didn’t see any improvement, we know what that means as it continues – sitting down for a “chat” in a comfortable room.

Thankfully she started to improve but your mind begins to run away, what if she doesn’t recover? How can I live without her? What can I do about it?

I can barely move or speak as I think of these things, but the hospital naturally brings up these sorts of awful thoughts and feelings as we witness some parents leaving without their precious children.

Oddly returning to the hospital after a long period away seemed harder than being regular visitors – We had gotten used to being normal (and hospital free) somewhat.

So, the news is that it doesn’t get any easier being away and coming back – We’re still trying to figure out, how do we live this hospital life?

It’s just as well that these children and those 10 months are so worth it

Looking Back: Positivity in Spite of Disability

I know it’s a bit typical at this time of year to see a review of the year, but it can be a very helpful thing as looking back is the best way to see how far you’ve come.

Here’s a little review and 3 thankful things:

Last Christmas we escaped hospital on Dec 24th the year before was 23rd and the year before Lydia was critically ill in PICU.

This year, as I type, we have had our first run up to Christmas avoiding the hospital (hopefully it continues).

January we were in our closest hospice with Lydia for a stay as she was well, and we enjoyed a supported stay for a few days

February was pretty quiet.

March took us back to Bristol hospital (about 2 hours drive from home) and we were there into April

This time Lydia had a really bad bug but Bristol children’s hospital were excellent with her, however Lydia had to be shipped back to our local hospital before she was ready for no reason other than political hospital finances.

Eventually she came home at the beginning of May.

We were back in the hospital on May 20th as Lydia aspirated onto her lungs (filled with milk feed) and another stay in hospital began.

Although hospital is rubbish you get to know the people you see frequently, and Lydia had a friend called Alfie (John) who was staying in the hospitals about the same time, so we were able to spend time with him and his parents – friends in similar situations just make these things easier.

In what proved to be a really dark and difficult period Lydia’s little friend Alfie sadly died – this tough little rock star shocked all who knew him as he was so full of life – what can you do or say?

Nothing, you can only cry.

The bleak winter seemed to be extended for us this year but in August the sun began to spring a little bit.

We got a new chair fitted for Lydia and we managed to take her and her sister to West Wales for a week where she got her cool new cap as pictured.

Since then we’ve thankfully avoided emergency hospital admissions as Lydia benefited from some of the changes to her care and help and now, we’re enjoying our first full Christmas build-up for Lydia.

Three things to be thankful for:

The good treatment Lydia got at a difficult time and effective ongoing care

Having the joy of getting to know Alfie and his family

A calm second part of the year and a clean run up to Christmas

What Your Car Says About You

You can tell a lot of things about a person by their car, or at least narrow down some options to likely outcomes.

If you see a really flash sports car you can assume, the person is rich or in lots of debt and quite possibly a man in a mid-life crisis.

You don’t stick around to see if it’s true but that’s who you pictured, and you move on.

A large 7-seater car however will leave you considering that this is a young family, particularly if the windows seem to have attracted lots of finger marks and smudged smiley faces drawn on.

Cars with large boot space and a cage styled between the boot and the top of the backseats would belong to a dog owner (or at least you hope so).

On top of the car itself you can find out about the owner based on some of the contents, a pink fluffy dice hanging from the mirror doesn’t say older business man and seats covered in clutter give you a very busy person.

Where the car is also gives some clues – outside a school could be a teacher or a parent, on a driveway means they’re at home and maybe their house is a new clue, or if they’re parked outside a hospital, they could be sick or a carer or they may just be a visitor.

Doctors and nurses have their own car parks so that is a bit of a giveaway.

Why have I suddenly started talking to you as if I am the Poirot of automobile investigation?

Well, my car can tell you a lot about me, its not particularly flash, I don’t have a fluffy dice and it can be found outside the school, on my drive or in the hospital.

My car is tall, it has a blue badge on the dash board and a blue tax shaped sticker on the front windscreen with a disabled sign.

It has another sticker on the back windscreen saying leave space for wheelchair and a big door at the back to roll a wheel chair in and out on the ramp.

Its usually parked in a space with yellow hatched markings next to other cars that are very similar.

From my car it’s likely that’s somebody could tell that we’re a young family, that a member of the family is disabled and unable to drive as they roll in at the back.

It would tell you that we need space around us and patience as we’ve got to do a lot more than just step out of the car.

We’ve got a lot of equipment to get out and buckles to undo before we can get everyone out and go anywhere.

It would take a shorter time to see and figure all this out than it has for you to read this paragraph.

The extra space afforded to the disabled spaces in my local hospital (Morriston, Swansea, Wales) has either side have been taken upon by able bodied people without a blue badge to park in which means rather than the disabled car users having MORE space between them as intended by design, they actually have LESS space than every other row of cars.

How helpful, unfortunately these people never get fined or stopped so it’s likely to continue. This tells me a few things about the people parked in the middle:

1. They have never struggled with disability for themselves or a loved one (Unfortunately it sometimes takes this to open people’s eyes)

2. They are selfish people who don’t care about anybody else as long as they’re ok

3. They know they’ll get away with it

4. They care more about money than they do about people (If there was a fine implemented that space would never be full of cars)

As well as this the pavements on the way into the hospital are covered in cars which means unassisted wheel chair users have no chance of accessing THE HOSPITAL.

Just think of the insanity of a world where we were so self-involved that we don’t notice that we’d made it impossible for a disabled person to access a hospital without rolling themselves into the road.

I wish we lived in a world where fines weren’t needed to inspire people to behave decently but we don’t.

So next time people get out of their cars and leave them where they are, I would love if they took a second glance and thought, I wonder what my car says about me?