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Where did all the love go?

  • Writer: markmcleod84
    markmcleod84
  • May 3, 2024
  • 11 min read

Those that know Natalie and I, will be aware that our favourite band is Kasabian, We have so many fond memories of attending their gigs together and countless hours spent dancing around the house. Not so much since Tom (lead singer) was evicted from the band for his missdermeanors, but that’s a different story.

The opportunity to use a Kasabian song title as a blog title has presented itself and I can’t get it out of my head. With the assistance of Alexa and Spotify, ‘where did all of the love go’ is now playing on a loop.


So, where did all the love go? 

The frustrations of Georges inpatient experience last week have started to boil over and we feel like we are fighting fires on numerous fronts. We experience a rollercoaster of emotions daily and seem to jump from the highest of highs to the lowest of lows in an instant, with no middle ground. 

The world is a difficult place for us both and we have both been taking sertraline to help us to cope. Initially 50mg doses but we have now both taken the step up to 100mg. 

We are not ashamed to admit that we are fuel’d by sertraline and we are both feeling the benefits of it. Neither of us expected to ever need the help of anti-depressants but they are enabling me to process my thoughts that little bit clearer, some good, some bad, some indifferent but the extra capacity is providing the head space to help fight for what George is entitled to and deserves. We will extinguish one fire at a time. 


George’s latest hospital stay has helped us gain a better understanding of how we feel our future will be. It seems that our lives are going to be full of frustration and anger and that we will be required to fight for George’s every need.


We have learned a lot since George was discharged from the NICU and we will continue to learn more each and every day. George’s condition is ever evolving and we need to learn to recognise his changes and ensure that his drugs are adjusted accordingly to ensure his seizures are correctly managed and controlled. 

If you had asked me what a seizure was and how it would look 6 months ago, I would have said someone shaking around on the floor and probably brought on by some flashing lights. I was totally ignorant to what a seizure was and how they would present because I have never been exposed to them or anyone who suffers from them. 

George’s seizures present in different ways and we are learning that everything isn’t quite always at is seems. When George first left the NICU a lip tremor or a vacant spell was all we knew as George’s seizure activity because that was how he had presented on the unit. The lip tremor was quite a violent looking action and one that I had never seen on a baby before which was quite upsetting to see, but all the more so when it’s your own child. I was told that if I held his lip and it stopped that it was nothing to worry about, but if it continued then it is a siezure. Eventually these stopped, Its unknown if medication is the reason or if he may have grown out of them, either way, doesn’t suffer them any more which is great.

The vacant seizures can be fear inducing. The only way I can describe them is, it’s as if someone has pressed a pause button and they can last from a few seconds or up to over a minute. George becomes lifeless and still and his eyes glaze over with a vacant stare, there will be no better musical statue player than George at birthday parties.

I was convinced George had died the first time that I witnessed a prolonged vacant seizure. He was lay in the next to me crib and had been crying inconsolably. Something that George does a lot, but all of a sudden he went quiet, still and unresponsive to noise or touch, then all of a sudden his eyelids flickered. My heart skipped a beat and panic was setting in until I saw his little eyelids moving, It was such a relief. It was and continues to be a distressing sight to witness.

From the outset we were told that If we noticed any seizure activity or what we considered to be possible seizure activity that we should record it and send it to the WhatsApp number for the epilepsy team. They would review the footage and determine if it was a seizure or not and enable them to help manage and control these episodes. Easier said than done when some are so short you barely notice, but even more difficult when you have no idea what you’re looking out for.

Recently George developed a new type of seizure, which became apparent when weaning him off diazepam. Initially diagnosed to relax him, it seemed that he had developed an tolerance and it was no longer relaxing him. The weaning process has shown us that it was actually helping to control seizures though.

These seizures presented as a startled reaction. We first recognised it when offering him a new flavoured puree. He seemed to recoil in horror when the vegetable puree touched his lip. We thought it was cute and that he had a strong dislike to the flavour especially as he isn’t really used to anything passing his lips. The re-coil was quite violent though and it continued throughout his attempted feed. 

Following a crisis care stay at the hospice, we were asked about this behaviour and told that it could be seizure activity. We sent videos to the WhatsApp group but were told not to worry. A few days later a meeting was held between the hospice and the hospital, it had been agreed that George required specialist input and that they needed to see it for themselves.

If you have read my previous blogs you will know that it didn’t exactly go to plan, but the long and short was that it was seizure activity, but boy did we have to fight to have our voices heard and to be taken seriously, even with the help of the hospice. 


George is extremely complex and is very draining to look after. Natalie and I couldn’t do it without each other but we still struggle and feel that we need bigger team to enable us to manage, but we are a tag team and all we have is each other through the difficult times behind closed doors. 

Our shared struggle has caused us to grow stronger as a couple which can only be a good thing. We never dreamet that we would ever be in this position and we would not wish it upon anyone, but this is where we find ourselves and nothing will change it. We have no choice other than to embrace it and ensure that George is given every opportunity to thrive and enjoy his time on this earth. A sentiment that will be echoed by all parents. Lusting to provide a better life than they have experienced for their offspring. Unfortunately I feel thats a goal that I will never be able to achieve for George. It feels like his opportunity for a better life has been cruelly stolen from him due to his Brain injury. I take small amounts of comfort in the fact that he knows no different. George’s world has always been the same and not lost due to an accident later in life as an example. We know that George’s condition is a life limiting one and we feel pressure to ensure that we enjoy him whilst he is here and really want to ensure that nothing holds us back from that whilst maintaining his dignity and ensuring he is pain free and comfortable at all times. Again, something else that I personally feel I’m failing at, at certain times. It breaks my heart when he screams in pain and we are waiting on more medical appointments with specialists that are yet to see him. 


I am slowly coming to terms with the fact that he will not meet milestones in the same way that a healthy child will, but I am strangely excited to see what he can achieve. I still mourn the child I hoped for and am devastated that I will not be able to experience things quite as I hoped due to his complexities but I am so glad that George was a fighter and survived. No matter how difficult, I feel so honoured to be his Daddy and cherish every moment I get with him but I can help feel the presence of the grim reaper hanging over my shoulder. Rightly or wrongly, I feel this on a daily basis. Every wheeze or cough George makes, my mind slips into panic. I remain calm on the outside, but inside I can help but stress. As every day passes our understanding of each other builds and the stress levels reduce but they will never disappear.


Georges complexities and demanding nature take their toll on Natalie and I, physically and mentally. We require support from various agencies to just get by. We found ourselves in a fortunate position to receive respite from the community team, having been referred by the community nurse. 

The introduction of this was crucial and much needed resource. In the beginning we were receiving respite care during the mornings. This ensured George was fed and supervised by the respite nurse, freeing Natalie and I up to catch up with the running of the house or to try and snatch a bit of sleep, but mainly the former. The nurses have been fantastic and have developed a lovely bond with George and ourselves which is crucial when inviting someone into your home. They have become what feels like extended family now. They are able to tend to George’s feeds and daily cares such as baths and nappy changes which really helps. he can be extremely difficult to bath and change, but fortunately these activities have become easier thanks to drugs. It makes me sad to think that my child needs to be given medication to enable daily activities such as this to be carried out, but that’s where we are at.

As George has grown and we have began to learn him, his and our needs have  naturally changed, but this doesn’t seem to be echoed by the respite team. We are having little to no input on when and who will provide respite, instead nurses are scheduled in for what seems to suit the planner as opposed to family needs. 

Due to George’s nocturnal routine, we are finding that nurses are turning up to watch George sleep, a time were I could be sleeping myself, but instead I’m disturbed from my slumber to let them in and handover George. It is handy that they are on standby incase anything is required, but it is very rare due to his sleeping pattern.

On numerous occasions we have tried to seek clarity on our entitlement but it falls on deaf ears. We understand that we are not the only people in the community needing this support but unless its at a mutually agreed day/time I struggle to see how it can be meaningful respite. The irony is that trying to get theses respite days to suit and be of benefit to us is actually draining us more, and we feel that we are in a position that if we turn down planned visits as we know George will be sleeping, it will be viewed that we no longer require it?


When George does have some waking hours, which seem to be few and far between during the day, we like to work him physically and stimulate him mentally. 

We have been advised that the possibility of George walking is extremely slim, but as long as there is a glimmer of hope, we are going to hold onto it. The GoFundMe campaign was built off the back of this and all of the other benefits the water can provide for George. We really want to make George the best version of him that we can and are so desperate for him to be able to walk. Our expectations are being managed but we will continue to work him hard and this requires physio input to assist us. 

When George first arrived home we received regular physio input from the community physio. This was then supplemented by the hospice physio. We felt we were very fortunate, until we were asked by Hope House if George had received a squiggle mat from the community, the answer was “what’s a squiggle mat?”. A squiggle mat is a mat with additional pieces that can be used to provide support allowing George to sit or lie supported ensuring that he doesn’t flop forward to to the side. It is good for George’s physical development and we had no idea that such equipment was available let alone that he is entitled to one through the local authority. We asked the question of the community physio who on the following visit informed us that a bid had been submitted. This was almost 3 months ago (half of George’s young life!) and that’s as far as it has progressed as far as we are aware.

We haven’t seen the community physio since, we have no idea how to get hold of them and even the hospice are being ignored by them. This fight will continue, but Hope House have yet again stepped in where others have failed and have ordered and will be loaning George a squiggle mat because by the time the local authority finally procure one, he will have likely outgrown it.


The Hospice are also helping to ensure that we can get a specialist chair for George to sit in as the mainstream ones that we have at the moment aren’t really suitable for him and they don’t support him as they should. They know exactly what he is entitled to and are helping us to ensure he gets it but even they are feeling resistance and told that it can’t be ordered as he needs to be sized by the team, the hospice physio is capable of doing this, but instead we are having to wait for the local authority to do it, causing a delay which we don’t want. 

We have been warned that there will be more resistance when it comes to sizing him as he will likely measure up to small. They have explained that if it’s not ordered now, the procurement lead times will mean another item will arrive that he will have probably outgrown.


Talking of outgrowing, everyone says that children grow up fast and don’t I believe it. It’s even more noticeable off the back of a hospice respite stay. George is starting to outgrow his car seat now and subsequently his buggy as it is a travel system. 

We are learning and connecting with other HIE families through the charity PEEPS. It appears that many HIE children require specialist car seats and push chairs. Exactly what we have expected. Although we haven’t had the input of an occupational thearapist, we believe this will be our next challenge. PEEPS have a WhatsApp group that Natalie and I have recently joined and to our horror there was a few messages being passed backwards and forwards recently regarding these pushchairs. One family were elated that they had been able to procure a chair for £5k….. £5000 for a push chair!! My head fell off but to my amazement the responses were ones of envy. This was seemingly a bargain. I have no idea how much they are new? I was upset to read that they said that their child had been so uncomfortable and sad in the NHS provided chair that they didn’t want to go out in it. They added that the lack of suspension on the NHS chair added to their discomfort. This seemed to be a feature that was present on most mainstream pushchairs and buggies that we looked at when purchasing Georges prior to his arrival, so why can’t it be standard on NHS ones?

We are not an extravagant family and enjoy nothing more than the comfort of home, but our one main pleasure is walking with the dogs. We do not want to have to restrict our walks because of George’s limitations and why should he miss out because he will require a specialist push chair with an astronomical price tag. It amazes me to think that people are loading these chairs into the back of family cars that must cost less than the chair just to enable a nice family day out. This is seeming the reality of life with additional needs.


The power of social media, specifically Instagram, has shown us that there are many families currently treading similar paths and what we are learning, is that they have to fight for absolutely everything and if you do manage to win the fight, it is likely that you will win you the most basic of prizes. Many charities seem to favour the good old means test to determine a families need. Families need support and it is unfair that quality of life should suffer in order to meet the often complex and demanding needs of their children, none of which wish to be the way they are and often face daily struggles just to survive let alone thrive in their lives. 


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