Let me tell you a story about a document, a document called an Education and Health Care Plan (EHCP)…

There was a time in my life that I had very limited knowledge of these documents, they were letters mentioned in meetings. Letters that had no direct relationship to my reason for being there.

When Charlie developed additional needs that changed, suddenly EHCP’s were mentioned in relation to my child, that relationship had changed and so too must my level of knowledge.

As a parent, understanding the EHCP process and document is fraught with difficulty. It often feels like it’s a club they purposefully lock you out of.

People rarely want to answer your questions, there are very few courses available that adequately explain the document.

A massive focus is placed on trust, trust that the document delivers what it’s supposed to, that the allocated funding is adequate to meet need.

The premise of an EHCP is a simple one, it is supposed to be the story of your child. Our portage worker said it would be a guide to Charlie where all of his history and needs, both educationally and medically, would be written down.

It is intended to ensure that his needs are met, that he is safe, and that he is able to access Education in a way that suits him. In theory it’s a clever document.

It isn’t easy to get an EHCP, there’s evidence gathering and form filling to be done. That is then looked at and a decision is made as to if your child warrants further assessment.

The further assessment takes 20 weeks (sometimes longer) and it is suggested this period of time is needed to seek professional advice and ensure all the child’s needs are identified.

At the end of this long and emotive period you sit at an outcomes meeting and are told if the local authority will issue or not.

I cried at our outcomes meeting. When we were told he was to be awarded a plan relief flowed from me. The naive, new to the SEN world, me thought we’d secured his future.

I thought that with that document he would be safe, he would be supervised, and he would be supported.

There was so much I didn’t understand, so much trust that was broken.

I naively believed that as the educational psychologist report, commissioned by the LA said “no less than 100% 1-1 supervision in any setting” that this is what he would receive. I believed that the funding, which was in no way transparent, would meet his complex needs…

I was wrong.

The plan said “adequate access to 1:1” and I believed, given the EP report which they had commissioned, that they understood adequate was “full time” and no less. That was not the case.

I assumed the funding would cover the cost of this care, it did not.

I also believed the plan would be overseen, that the care and progress would be checked. It was not.

Eventually the full facts of what had been happening to my vulnerable, non verbal, child became apparent. It was heartbreaking and the harm and emotional scars remain.

I was angry, I was let down, Charlie was neglected. People looked me square in the eye and told me that I was overreacting, that I was a problem.

I tried to get people to understand what was happening and it was like screaming into the dark night, it felt hopeless.

Eventually the funding was changed to meet his needs and a change of settings saw a profound change in care and respect for Charlie.

We were relieved, but always wary. Once you have had your trust abused you never forget.

One issue remained, the need for constant 1:1 at school was not explicitly stated in his plan and while he receives this from his brilliant school we needed to know it would continue.

Last year at the review of his plan, some things were questioned including the removal of specified funding amounts.

I was assured this was going to be standard practice and was told this wouldn’t affect his provision. Our experiences told us this was not our reality.

I sent fraught emails until my concerns landed with the manager, she again tried to tell me it was fine. I explained all the reasons it wasn’t and that his care needs were not explicitly stated in his plan and this was an issue to me.

She said any professional recommendations most certainly should be in his plan, I explained again they weren’t and that I kept trying to explain this to people.

I explained how lucky we were that school recognised his needs but I wanted it formally acknowledged in his plan.

That would be the only way I would feel comfortable with the removal of the funding amounts.

Then a wonderful thing happened, she said she would look for the relevant documents and review his plan. She said someone would come back to me, and I held my breath until they did.

Finally I got an answer, finally my belief was validated. I received an email that said his case worker and the manager had reviewed his file and that, as a result of this specific information, information would be added into the section stating the provision required.

My heart raced as I read “A high level of adult support and monitoring throughout sessions in setting. One to one support for a minimum of 100% of time in setting to ensure maximum access to learning environment and safety”.

This is what I had been fighting for, this is what I had been trying to explain, this recognition of his needs was all I wanted.

Now I feel both elated and sad. I’m beyond happy that they agreed to this, that the plan was changed, the school was funded appropriately and Charlie will remained safe and happy.

I’m also sad, sad for all he experienced and sad for how long it took people to acknowledge the importance of those few sentences.

Those sentences, that should have been there all along, would have saved him from all the lack of supervision and mental trauma he experienced, not to mention the impact on his already delayed development.

An individual was able to treat him that way because “legally” he could and that breaks my heart.

This year his review highlighted further issues, no significant changes have been made to his targets or needs in four years, other than the addition of the 100% 1-1 last year’s plan nothing has changed.

In four years he hasn’t achieved the targets set when he was two, his needs have changed, new diagnoses have joined the party that make these targets all wrong for him.

It is not a plan that will support him or the school. The school submitted comments stating it needs to be rewritten.

His review happened in April, it’s been a stressful time of uncertainty. Finally weeks after the review and an initial decision to reissue the plan unchanged, we had agreement to amend the plan.

The school year has now finished, the level of communication is poor. Charlie still does not have an agreed plan, I cannot get clear answers to any questions.

He has no school named on his draft, the school have not been communicated with. The school we want him to remain at.

The so called “experts” are placing the responsibility for an adequate plan squarely at my door again. I don’t know how to write an EHCP!

I have been asked to prove diagnoses that have already been referred into the specialist inclusion team, I am drained.

It shouldn’t be this hard to have your child’s needs correctly acknowledged, it shouldn’t rely on the moral compass of those around the child to ensure they are cared for correctly.

With the right care and support Charlie is capable of amazing things, the last year alone has been testament to this. His achievements look different but they are still clear to see.

In theory the EHCP is a positive thing, the people who write and manage them need to understand what they really mean though.

While they continue to see them as a “cost” and a means to an end, while they continually fail to see the children behind these words and recommendations, they will not fulfil their purpose.

It shouldn’t be this hard for parents to navigate this system or to be heard. It certainly shouldn’t be so hard for the Child at the centre of these plans to have their needs seen and correctly supported.

So today I’m grateful to the people that listen, there are no words to express my gratitude, but I’m sad for all the times I am dismissed and made to feel I imagine his level of need. I’m sad to have been made to feel like a dramatic and needy parent.

So now I will continue to question and chase. I will remain nervous until his school is once again added as his placement. Due to previous experiences I am worried. Yesterday I paid his school milk bill for the year and then worried in case he wasn’t allowed to stay.

It shouldn’t be like this…

As a parent we know what is right and I’m proud that I will never give up fighting for Charlie’s needs to be correctly acknowledged.

The absolute truth is though, it shouldn’t be a fight…

Some things are worth the fight.

Today I want to share with you a story, it’s the story of families like ours. It’s the story of those of us that are living a life with a family member who has complex needs. Today I want to give you a peek behind the curtain so that, if you don’t live this life, you can maybe understand a little better.

Please know that every family like ours needs understanding, it can be a lonely road we walk. We often find comfort from the people that have similar experiences, but the truth is we frequently need it more from those who don’t. So if you have an employee, colleague, friend or family member living a life like ours there’s some things I think they’d like you to know.

They want you to know it’s hard, not hard like being a bit tired but hard like your very bones feel like lead. Often the appointments, letters and battles drain your soul in ways only a very efficient dementor can. They want you to know, and they’ve probably tried to say it before only to be met with “yeah I know my kids are a nightmare” or something similar and then they can’t carry on, they don’t have the words.

They want to tell you how scared they are, that they have faced losing their child and that the truth is they are likely to face that again and again and again. They want to tell you about the fear that creeps from the darkness when the lights go out, the memories that weave their way into their nightmares, the screams that pierce the silence of the night. They may tell you, it may sound blunt, and you may not take that seriously. Please know when you have to deal with things like they have to, you have to learn a certain amount of detachment. Holding onto the reality would make you sob and you don’t have time.

They want to tell you every phone call from school or nursery makes their heart race, they are always primed for the worst. It’s like a brace for impact moment. They need you to know that if they phone you in these moments, for any reason, that panic in their voice is real, they aren’t being dramatic.

They need you to know that health emergencies are just that, in fact for them most times it really is life and death. They need you to understand if this time it all turned out “ok” it doesn’t mean it wasn’t traumatic. They were still afraid, they could still feel their heart pounding in their chest and the wave of nausea hit as the knots in their stomach multiplied. They want to tell you the reason they respond this way is because at least once it wasn’t OK, at least once they may have handed their child over to a surgeon and it was terrifying. They need you to know they have sat in rooms being told the most heartbreaking news you can imagine, often repeatedly. They need you to know that just because this particular situation appears over it doesn’t mean it’s over for them, they are still emotional and scared and reliving all the times it wasn’t OK and worrying about all the ways it might go wrong next time.

They want to tell you all of these things, but they can’t find the words. They have probably tried and they’ve seen the look of shock on people’s faces, or even worse their worries were dismissed. They want to tell you, but they worry you’ll think them dramatic. They want to tell you, but they don’t have the strength left to explain. They are tired in ways you will never understand and fighting battles they hope you will never experience. So when you ask how they are, they will probably say “fine” because they think saying anything else won’t help.

So please help, please try to understand, please know the things they don’t have the words to tell you. Just a little empathy can really change a life.

#aboutaboyandhydrocephalus #hydrocephalus #hydrocephalusawareness #acquiredbraininjury #autism #hearingimpairment #specialneedsparenting #hearourwords #understanding

Follow our journey on Facebook and Instagram “About a Boy and Hydrocephalus”.

On Wednesday 15th June we did something wonderful. Myself, my husband and our son Charlie got the chance to attend Harry’s Hydrocephalus Awareness Trust’s first parliamentary reception hosted by Michael Gove at the House of Commons. It was an amazing event attended by MP’s, medical professionals, supporting professionals, hydrocephalus families and the US Hydrocephalus Association who came to talk about their work with Harry’s HAT to expand the hydro assist app to the UK (which will be brilliant for families like ours).


We love Harry’s Mummy, and all the Harry’s HAT team and think they are so inspirational, it was lovely to finally meet them in person. We were thrilled when they approached us to be part of the “Hydrocephalus, what I wish I’d known” book. We were even more honoured they asked us to speak at the event.

It’s strange because when the mistakes around Charlie’s head growth occurred I remember being so upset and angry, I went on a mission. It was a mission to get the errors recognised. We informed the local health visiting service of our concerns and a serious clinical incident investigation was undertaken and the findings showed failings. We registered a complaint with the NHS and one response, one meeting where I ripped that response to pieces and a second (more appropriate response) and a promise to review training for GP’s and we felt we had some progress. It also didn’t feel enough, we started to realise in the Hydrocephalus groups we joined on social media that so many people had similar heart breaking stories, so similar to ours. We started to realise that while Charlie had been failed he most certainly wasn’t alone and we worried for those that came next. I remember saying “this has to change” but I had no idea how.

At the reception I was given the opportunity to tell Charlie’s story, to lay bare the mistakes and to show how it could have been so different. I was able to tell a huge room of strangers how my baby’s life was torn apart by the lack of process and professional guidance. I was able to tell people what a difference head measurements, and not just head measurements but knowing what to do with those measurements, would have made to his life. It was a very emotional thing to do. I cried, I didn’t want to but I did expect it may happen. I did give a five minute warning of the possibility of tears so I believe that exempts me somewhat.

I’m so proud I got the opportunity to tell his story. I said “please remember Charlie” the little boy who spent the entire event on the terrace his hurt brain unable to understand and cope with the hustle and bustle inside. Remember Charlie, remember how different it could have been and that a robust head measurement process would literally change lives.

Four years ago I said “no more” and at the Reception I got to say that loudly to people who could make a difference to the lives of children like Charlie. That’s a pretty amazing thing to do and I hope one day Charlie is able to understand that he matters, so much, we can’t change what happened to him but we can try to ensure it doesn’t happen to others.

When asked about the Reception, Harry’s HAT Founder Caroline Coates said “it was an inspirational day which has raised awareness of a relatively common, yet often misunderstood, condition which affects so many children including my own son Harry. The event has also helped us to highlight why head measurement in babies is so critical in helping those born with hydrocephalus to have the best chance in life”
of our speech she said “It was such a privilege to have you there. Telling Charlie’s story had such an impact on everyone in the room. You were amazing! They say you should never meet your heroes- well we met ours and you guys are even more amazing in real life!” 💙🧡

Michael Gove said ‘I was absolutely delighted and honoured to host the parliamentary reception for Harry’s Hat at the House of Commons earlier this week. Harry’s Hat is a hugely important charity, which is providing vital support for children and their families who are affected by Hydrocephalus. It was so wonderful to see Caroline Coates again, the Founder of Harry’s Hat, and to meet some of the other brilliant people working to raise awareness of this condition and the importance of head circumference measurement in infants. I was also very pleased to see so many people there showing their support for these brave children and their parents, and it was great to see a number of other MPs attend too, as well as ministers from the Department of Health & Social Care.’

It was the most memorable day and we were so proud to have been part of it. We hope the small part we played helps the next generation of hydrocephalus sufferers secure a quicker diagnosis

On Friday the 4th of March in Oxford an amazing thing happened, we won a Child Brain Injury Trust Diamond Award. We won the “outstanding family award” and we are so humbled to have been chosen. Our son Charlie has a condition called Hydrocephalus which means his body cannot naturally drain the cerebrospinal fluid (CSF) around his brain, this build up of fluid caused an acquired brain injury when Charlie was a baby. Charlie underwent brain surgery at seven months old to fit something called a shunt, this essentially drains the fluid from his brain into his tummy because he can’t do it himself.

The damage to Charlie’s brain has affected every aspect of his development and life is often hard, added to that his shunt could fail at any time and shunt failure can cause outcomes so terrible it makes you sob just to think of it. Every suspected shunt failure is anxiety inducing and it can happen at any time so it’s a very emotional path we’re on. We have faced many obstacles since his surgery and Charlie is truly inspirational in how he approaches life and the challenges around him. We have been supported since he was small by the Child Brain Injury Trust and we have been so grateful for their care and support. A journey like ours is often very lonely and very misunderstood, without the right help you can slowly find yourself drowning. Due to our experiences we decided to raise awareness of his condition and provide support to other families on similar journeys. We set up social media and worked with charities to share Charlie’s journey. We have been lucky to work with “Harry’s Hydrocephalus Awareness Trust” on a book which includes Charlie’s story, this is now given to parents on every paediatric neurosurgery ward and it is also distributed across the world. We are about to be a part of a national poster campaign raising awareness of the importance of head measurements in infants. Due to the work we have done we won the “Outstanding Family Award” at the ceremony on Friday, we were so proud that the Child Brain Injury Trust felt we were helping others.

A note from the judges:

“The judges were deeply moved by this family’s story, their courage in sharing their journey has been a lifeline for many families, not just here in the UK but across the World. Their strength and resilience is truly inspiring, the award goes to the Pilling Family.”

Winning the award was super emotional, I had been emotional all day. We were so proud to win the award and thrilled people felt we were making a difference. What we do is a direct result of the support Cbit has shown us, they were our light in the darkness and they often still are. They showed us the way when we were lost and we want to share some of that care and compassion with others. We wanted to “pay it forward” and we hope we can continue to help and make a difference for years to come.

We met some truly inspirational people on the night and felt honoured to be amongst them. The Child Brain Injury Trust is special, it is human, they care. The impact they have is indescribable, they make the worst times of your life manageable, they say “we’re here” and they really mean it. At the most lonely and isolated points in your life that means more than you can ever fully express.

Thank you Cbit, for all the support, for the award and more importantly for making us so welcome at your celebration. We had an amazing night and Charlie felt like a total rockstar! As I said to Matthew the morning after we have never been anywhere when we have felt so completely accepted and that was such a special thing.

For more information on our journey please visit “About a Boy and Hydrocephalus” on Facebook, Instagram and TikTok

 

 

 

Recently we have recently been nominated for an award at the Child Brain Injury Trust Diamond Awards, the nomination is for the “outstanding family award” and we have been nominated by our ABI  co-ordinator because of the obstacles we have faced since our little boys brain surgery, how we have pulled together and the steps we have taken to raise awareness of Hydrocephalus (the condition that caused his brain injury) and the support we have given to charities and families like ours.

Our little boy Charlie has acquired, communicating hydrocephalus. In short Charlie can no longer drain the fluid around his brain (CSF) naturally.

Charlie was diagnosed at seven and a half months and his shunt was fitted two days after the diagnosis of hydrocephalus. His diagnosis was delayed and it was this delay that caused significant damage to his brain.

Until the days preceding Charlie’s surgery I can honestly say we had never heard of hydrocephalus, I often reflect on how strange it is that something which we did not even know the name of has changed our lives completely. We attended what we believed would be a routine paediatric appointment on a Monday and by Wednesday he was in theatre undergoing brain surgery. We heard words we had never heard, like hydrocephalus, sunsetting, VP shunt. The shunt they fitted now keeps him alive, it could fail at any time and that is terrifying, the thought of it is the dark cloud in the corner of every day.

It took time to understand our new situation, we found the Child Brain Injury Trust and they helped us to understand, to accept and in a strange way to grieve. Life would never be the same again and that is a hard thing to comprehend. They have listened when we cried, supported us when we were lost and they are one of the most “human” charities I have encountered.

The brain injury he suffered caused global developmental delays and it takes numerous professionals to support him both medically and developmentally. We currently work with 13 professionals, he has constant appointments and therapies, it’s a lot of plates to spin. He is mainly non verbal which is one of the hardest things, he cannot tell you if he’s in pain or what hurts. In other ways you get really good at understanding him without words, thank you Justin AKA Mr Tumble!

On our journey we have felt isolated, it is impossible to explain to people what we are facing. Very few people have heard of Hydrocephalus, this makes things so much harder. How could things be so serious if people have never heard of the illness. We were largely alone in this strange new world, just the three of us trying to find a new path. At times we have been broken and utterly lost and in the middle of this we started a blog “about a boy and hydrocephalus” firstly on wordpress, then Facebook and then Instagram. Initially it felt like therapy and if a few new people heard the word Hydrocephalus and understood a little more then even better. Our content is now recommended by charities, our posts shared world wide and it’s helping people and that’s amazing. For every child that is spared Charlie’s suffering because they are diagnosed sooner this is life changing. More importantly families like ours are connected, they feel less alone and that is one of the reasons we were nominated for the award. The messages we receive from families often bring tears, we had no idea that sharing our crazy, chaotic life with others would have such impact. One comment read “I’m not one to comment but I just had to thank you for being that little beam of light on some of my dark days” and it’s quite overwhelming to think we have had such an impact, as a family that found themselves in that darkness the knowledge we are helping others and they are thankful for us is so very special.

The nomination is a wonderful thing, we’re still a little in shock, the judges will now decide upon a winner. The thing is every single family facing challenges like ours are inspirational, I can’t even begin to explain how inspirational, and I’m so pleased and proud that we can help them just as the Child Brain Injury Trust helped us. Win, lose or draw the knowledge that we have helped will always be the greatest prize and on the days that we feel battered we remember just how far we have come.

If you would like to know more about life with Hydrocephalus and childhood acquired brain injury please find us on Facebook and Instagram About a Boy and Hydrocephalus.

The awards ceremony is on Friday 4^th March 2022

Here’s a link to make donations to the Child Brain Injury Trust –  Make a Donation – Child Brain Injury Trust

The world is very strange at the moment, there is no denying it. Social distancing, masks and being in and out of lockdowns makes for a complicated existence, it certainly changed Christmas as we know it. That being said Christmas with Charlie has always been different, the current covid restrictions only served to add to that. Due to Charlie’s Hydrocephalus and resulting brain injury he becomes overwhelmed easily and Christmas is all about big, noisy and overwhelming. It can very quickly become to much for him and we have to be able to recognise that and try and help where we can. That being said we do also need to keep socialising him and exposing him to busy, bright and loud experiences to help him to learn how to cope. It’s a delicate balancing act and I think it’s safe to say we learn something new every Christmas. There is no rule book for what to expect, brain injury is as unique as a finger print and no two people will have the same pattern of damage. Our first “post hydrocephalus” Christmas was very strange, we were told to expect he may be overwhelmed but we didn’t realise what that would look like. It’s safe to say we probably did a lot of things wrong. We took him to various Christmas parties and Santa experiences and in the main that was OK, he was subdued but not noticeably unhappy. He was actually really calm and happy while high fiving Rudolph on the Santa express and sitting on Santa’s knee in a grotto. All was going relatively well and no real sign of problems until Christmas day. We had moved several of his toys to make a little space for his presents thinking this wouldn’t be a problem. He didn’t understand the presents, that was fine he was young. He didn’t want to rip the paper, even with help or encouragement, he was looking for his toys and was increasingly emotional that he couldn’t find them. He was only recently mobile but he tried to get away from the excitement of Christmas. We quickly tried to regain some normality for him but he was quiet and withdrawn for some time. The following year we had some experience, we tried to use what we learnt the year before. There were some difficult moments, one particular visit to an elf workshop reduced me to tears. Parents judging him as he sobbed was frustrating and hurtful. He has self regulation techniques and in this environment he was unable to use any of them, all we could do was support him and hold him and let him know he was safe. I often struggled to find the words to explain that he is non verbal and that was often hard for Santa as well as us, as Christmas wore on I grew in confidence when having these conversations. I still don’t know why but I often find I get a bit tearful when trying to explain Charlie’s story to people. Christmas day was again overwhelming but we took things more slowly, he had breaks between presents and although he did get overwhelmed he did have space to “reset” and calm himself. We took three days to slowly open gifts and he enjoyed time to “get to know” his new toys before moving to the next present.

This year was our third post hydrocephalus Christmas and along with the covid situation it has been very different. Once again we tried to book as many Christmas experiences for him, we booked a tots Christmas fantasy holiday, Santa visits, tea with Santa on Christmas Eve and one by we saw these cancelled. We were disappointed but for different reasons than just a lack of festive spirit, we were worried that if Charlie didn’t at least see Santa this year he would struggle to understand what was happening next year. A lot of these worries derived from the difficulties we have had between lockdowns reintroducing activities that he was previously comfortable with such as trips to aquariums and hair cuts. Familiarity is important to him and we are manically trying to reduce any lasting negative effects that lockdown may have on him. We were lucky to find two “socially distanced” Santa experiences. One was at a local garden centre that we had visited the year before. The stress of securing tickets was akin to buying to tickets for a Green Day concert some years ago, it was intense! Eventually I achieved my goal and we secured tickets, it took three hours and lots of frustration and expletives but I did it! Charlie struggled with the queue but he did sing wind a bobbin with an elf so it wasn’t all bad. He tried to escape Santa’s grotto at one point but he did then manage to sit on Daddy’s knee and look at Santa, still a little awkward to explain in a couple of minutes why Daddy is answering for him but ultimately it was a positive visit. We also booked a Santa experience at a farm we visit, he was confused at times and we had a few meltdowns but he waved at Santa , saw his favourite meerkats and Mooed at a cow. Let’s be honest how does life get better! We have tried really hard to give him positive experiences despite the pandemic and I think sometimes you can only do your best and accept somethings you cannot control.

This year we experienced a new complication. Charlie is developing his own interests, likes and dislikes. He is making his own decisions and it’s lovely to see his personality continue to develop. As he is non verbal he can’t tell us what he wants for Christmas we have to observe him and try to decide what would make him happy. Some things like Frozen, Olaf and Lightning McQueen are relatively easy to see and so you know presents based around these things will be well received. A few weeks before Christmas, when I was feeling quite smug that my Christmas prep was going really well, I noticed he was engrossed in something new on his tablet. I vaguely registered it singing songs and that he would giggle and become excited watching whatever it was. It transpired the bringer of joy was something called Cocomelon. Pleased with my detective skills I thought, ah we can buy him some Cocomelon toys for Christmas. Little did I know the toys of Cocomelon are rarer than diamonds. Unscrupulous people were bulk buying and overcharging for the toys it was quite the Christmas crisis. I now know what my mum went through to secure a cabbage patch kids one year in the early 80’s I’ll be honest I felt some serious stress at trying to secure these items but I managed it and I tell you now it was worth it! Never did I think I would feel such satisfaction at securing a singing bus and doll, how times change. The thing with a non verbal child is just because they can’t speak and express their opinion it doesn’t they don’t have one . Charlie has opinions and thoughts and can feel desire and disappointment just like us, my greatest fear is not reading his signals correctly and making him unhappy. We are continually trying to aid his communication through speech therapy, signing and physical cues but at times it is really hard and there is nothing more heart-breaking than seeing his frustration and tears if we don’t understand him.

I will be completely honest that I love Christmas and as a child felt such excitement at Christmas. I suppose when I was looking forward to being a Mummy one of the experiences I was looking forward to was a family Christmas and watching my little one excitedly wait for Santa and wake early to open presents. This Christmas Charlie fell asleep before his Christmas Eve box was opened and turned his back on his presents on Christmas morning to read a book. There is a little twinge of sadness for that expectation I had but then, as with a lot of things, I have to reframe it and look to the positives. He didn’t turn his back on the gifts because he didn’t want them or because he is ungrateful, he did it because it’s all just too different for him to take in. He doesn’t understand wrapping paper or the desire to open it but once you help him or open the gift for him it’s lovely to see his reaction. He doesn’t rush anything, if he likes a gift he may play with it all day and that may be the only gift he opens but that’s not bad, at least it shows you picked the right gift! This year we opened our last gifts on New Years Day, some days we only opened one gift but he was calm and happy. He took time to settle himself and it was nice for him to have the opportunity to see two of his grandparents on Christmas Day, although it did take him some time to reacquaint himself with his surroundings. It’s different but it’s not bad, I’ve learnt time and again on this journey that I have to change my expectations but once I do there is often a lot of joy to be found.

Next year we’ll probably change things a bit again, we’ve done some more learning this year and we’ll take that knowledge and try and make next Christmas even better if we can. Come back to me in ten years and I’ll let you know if we ever actually get it perfect but to be fair I’m unsure there is ever true perfection in life. Life is chaotic and ever changing and the best you can hope for is to meet that head on and emerge smiling. Learn lessons but don’t forget to enjoy the moment and embrace the memories you make, good or bad they are all chapters in our story.

“I can’t change the direction of the wind, but I can adjust my sails to always reach my destination.” – Jimmy Dean

I think recent events have been so unexpected and strange it’s taken a while to actually understand what has happened and how it has affected us. I’m pretty sure a pandemic of such proportions,that has effectively shut down large sections of the world, was the last thing the average person on the street saw coming. It all seemed to escalate very rapidly, one minute coronavirus was a meme on Facebook and the next minute we were effectively prisoners in our homes. Everything we knew, our way of life was taken from us with not even time to adjust to the situation. To say it’s been surreal would be understating the situation. To try and navigate this unbelievable situation with a two year old is hard, they don’t call it the terrible twos for no reason. To try and navigate it with a child with an acquired brain injury is exhausting. It’s difficult, if not impossible, to explain to people what it means to have a toddler who is dealing with the “extra” that an acquired brain injury brings. There is a lot to consider, he has certain behaviours that are exacerbated in times of stress. He is a complicated little package, he has some behaviours which would be considered autistic traits but he is not thought to be autistic, it is a result of the pressure in the brain and the resulting damage. He thrives on routine and can be heavily emotionally distressed when this is removed, the removal of nursery and everything he has known since nine months old was very hard for him. Add into the mix that Charlie has never had to compete for attention in his life due to the fact that his condition demands constant supervision and two parents trying to work from home in very busy jobs has been hard. We work in very reactive roles and we have been unable to create any kind of formal timetable and that that has been intolerable for him. The day when he sobbed inconsolably because Daddy’s phone rang really broke my heart. I am sure so many parents would agree trying to wear both your professional and parent hats at the same time is impossible and the guilt levels that grow from not being able to work miracles is gut wrenching. I have felt guilt that there are times I have left Disney + to parent my child but equally we have to work to provide for him and you just can’t win. I have been terrified of the lasting damage being at home, without the level of  activity he is surrounded by at nursery, will do to his recovery and long term outlook. I have been in tears at the thought that professionals have stated he needs 100% 1-1 supervision in any setting and as a parent I was not fulfilling these needs. I have  felt like I was failing, I have sat and cried numerous times feeling like I was not doing enough. I do like to have an element of control over things, it’s how I cope. I am a problem solver, I make plans. Lockdown does not allow for planning and that has been hard. The longer the lockdown continued the harder I felt it, there was no plan, no light at the end of the tunnel at times. I think it made us realise just how much we value nursery and the support that brings. Taking him out of nursery has been one of the hardest parts of this, he has delayed social skills and taking him away from other children could really impact on his ability to develop these skills, he is a very sociable little boy and he cannot understand that he cannot approach other children when out on his walks. We got progressively more tired, frustrated and emotional. I felt absolutely drained at one point and there was absolutely nothing we could do to make things any better for any of us and that realisation can feel soul destroying. I have felt panic, I have felt trapped, I’ve screamed “I can’t do this” while realising I have no other option. I know it has been a struggle for everyone, it’s a truly appalling situation that nobody had a plan to deal with. I am always mindful that I don’t want to paint a picture of us having things so much harder than others as I know in some ways we are lucky and we try to cling to that. The thing is there are difficulties that we cannot get people to understand, I think he looks so “normal” that it can be hard to understand all the things that we have to deal with. He suffers severe leg cramps where his legs lock and twist, he gets very hot and sometimes needs holding for hours at a time as he presses his head to yours. His lack of communication skills mean that he can’t understand us and equally he has no way to explain to us what he is feeling, not even the basics of expressing his needs and desires. We have to try and  anticipate and guess what he needs. We try as hard as we can to read him and his “communication” we pray it’s enough.

We have been through lockdown birthdays, Charlie’s was hard as he normally spends it with the friends he’s had for most of his life. Strangely that lack of an update photo of them together was quite poignant. Luckily he managed a party in grandma and grandads garden in between the ebb and flow of lockdowns and restrictions. We have crammed a lot into the brief periods of relative freedom. We have been to the zoo, aquariums, owl parks, theme parks and his first circus. Some of these trips are therapy in themselves, he has to learn to be around busy crowds again. He has to deal with the sensory overload that brings and somewhere in the middle we need to maintain social distance, which he does not understand. He went back to nursery in June and that helped to anchor him again. He had his people back and the way they planned for his return was amazing. He feels calm at nursery and his happiness at being back was clear.

We’ve had three holidays cancelled, he likely won’t see Santa this year and as small as that seems in the grand scheme of things it means a lot. He has to have these experiences to learn how to process and deal with them, it’s all part of the process. So as we near the end of another lockdown and the start of new restrictions we do what we can to shelter him from the storm. We are trying to make things special for him, differently special but still special. Hopefully we will come through the other side sigh and say “it was horrible but we made it through”. He is the light at the end of our tunnel and we will follow his light to the end of the earth.

There are rare people who will show up at the right time, help you through the hard times and stay into your best times…Those are the keepers – Nausicaa Twila

In June Charlie returned to nursery, his return took meticulous planning and one of the decisions made was to move him into the preschool room early. It was a gamble, he would move to a new room with older children and there was a risk he could be overwhelmed. Most certainly his delays would be more apparent than ever but there were definite positives to trying. Charlie’s key person was still furloughed and the other people he had close bonds with were in the preschool room. It was worth a try and so we trusted the judgement of the nursery staff and gave it a go. It was a leap of faith, but we did know he would be with people he trusted and who knew him completely so that reduced the fear somewhat.

My main concern for him was that he would feel isolated from the other children. He has physical, emotional and communication delays and my worry was he would be alone or excluded from activities by his lack of ability. Various professional reports had highlighted that he “tolerated other children” and that he did not know how to approach other children and play with them. He has some little friends he has had since babyhood but he doesn’t fully understand how to interact with them and that can sadden me sometimes. As a mother the thought of your child “on the outside” is so saddening. He has such a joy for life and I never want to see that spark extinguished. It turns out I didn’t need to worry as the most magical thing started to happen, Charlie made a friend. As the days went by we were told about a friendship that was developing between him and an older little boy, Thomas, we were told how wonderful they were together and how happy it made staff to see them play. With his mum’s permission we started to receive pictures and videos of them and I actually cried with happiness watching them. The kindness and understanding that Thomas showed Charlie was amazing. Just small actions that showed he understood Charlie’s difference and embraced it. He would give Charlie quite a long head start when playing “tig” and Charlie loved every minute of thinking he’d got away. He would pick Charlie up when he fell and hug him to make him feel better. The video that made me sob most showed Charlie go to him for a hug he then took Thomas’ hand and guided him to another part of the room. It was wonderful, he followed without question and Charlie did not doubt he would. Without words he understood him completely and Charlie felt heard. There are no words that can explain how I felt in that moment, to know that one beautiful and thoughtful little boy had given Charlie a voice. That he made Charlie feel included, that he made him feel happy, that he made him feel safe. Children like Thomas are special, their heart shines so brightly and their acceptance and understanding knows no limits. Seeing them playing together, so utterly happy in each others company, was one of the best things I have seen.

It transpired that Thomas would start school this September and leave Charlie’s preschool class, it was sad to think he would lose his friend so soon but then another wonderful thing happened and his mum left her number with the nursery and I thought that was one of the most lovely things to do. We started exchanging messages, planning to eventually get the boys back together. In the middle of these messages Charlie fell ill and ended up in hospital and it was then I realised that Charlie’s illness would be completely unknown to his friends mum. I then had a bit of a wobble worrying about how to tell her without freaking her out and worrying she may no longer want to meet up. Wise advice from a friend was to be truthful and just explain he is differently abled and she was sure it would all be OK but it’s not always easy to start that message and I won’t deny I held my breath a little bit as I pressed send! I didn’t need to worry she was every bit as wonderful and understanding as her little boy and I can now say I have had the pleasure of meeting her and her beautiful boy in the flesh. Watching the boys play together is magical, Thomas gives Charlie confidence and it is beyond amazing to see Charlie just being a little boy. To watch them giggle, play and enjoy each others company is heart warming. The speed at which Thomas runs to Charlie if he stumbles brushing him down, hugging him and checking he’s ok just makes my heart so happy. Sometimes someone just “gets you” and it seems Thomas is Charlie’s “person”, sometimes communication and understanding is so much more than words. Sometimes you just need someone to be there, not to fix it but to just sit beside you letting you know it’s ok I’m here. He is completely oblivious to Charlie’s differences and it is refreshing, their friendship goes deeper than that and I guess we could all learn a thing or two from that unquestioning acceptance of each other. A very wise bear named Winnie the Pooh once said “A friend is one of the nicest things you can have and one of the best things you can be” and you know he’s completely right, friends make the world a bit brighter.

Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born – Anais Nin

So he’s three, how did that happen???? It’s a strange one really as sometimes it feels like two minutes since he was a little baby and in the same moment it feels like he’s been here forever. Life BC (before Charlie) seems like another lifetime, I am most certainly a different person to the one who waited for that pregnancy test result one Monday in December. It’s been quite the rollercoaster, strangely my anxiety levels seemed higher when I was pregnant and things “could” go wrong rather than now they have if that makes any sense. I have heard it said that you can cope with anything as long as you know what you’re dealing with, the unknown is what induces the fear. Prior to my pregnancy with Charlie I suffered a missed miscarriage of twins, this is when your body does not miscarry naturally. In my particular case it was identified at a routine scan, no warning, no heartbeats. I think that sudden and dramatic change of fortune is difficult. You didn’t see it coming, even your own body seemingly missed the signs. There are no answers, nothing to look out for next time so no way to know if the worst has happened. That fear gripped me throughout my pregnancy, the fear of not knowing. I was terrified before every scan and every midwife appointment. I counted the days until my due date, I couldn’t enjoy the pregnancy at all, I just wanted my baby with me safe and sound. It transpired Charlie was as keen to meet me as I was to meet him and precisely four weeks early he was delivered. I had a very brief time to enjoy his arrival due to complications of my own and as I was wheeled, somewhat confused, from the delivery room my main thought as I drifted in and out of consciousness was that I had waited so long to meet my baby I didn’t want to leave him now. I guess I was pretty clear on that point as I returned to my family later that day. He had a bit of a bumpy start with multiple hospitalisations for jaundice and each time we had to return to hospital I sobbed, fearful we would lose him, fearful something would go wrong. Finally we made it through and he came home to us to start our life as a family. I was completely in love and awe of him. I did the typically annoying parent thing (I still do) of filling my social media with him and tales of our love for him. He was to be my one and only and all I could think was what a perfectly wonderful one and only he was. His personality developed and he was clearly a Daddy’s boy, lighting up whenever he entered the room, that has never changed they remain to this day the most perfect double act I have ever seen! We joined baby groups, we made friends and those early months were magical. We took family holidays, went on day trips and started planning for his first Christmas. So far so normal and then in December things were changing. My anxiety was rising, unfortunately this time it was justified. Strangely in the middle of the events surrounding Charlie’s Hydrocephalus  diagnosis and brain surgery I don’t recall being as scared as I imagine I should have been. I think the speed of events and the limited information available to me at the time limited that fear or maybe I was in shock. I’m still amazed at how I wasn’t sat in a corner rocking and sobbing but I’m also so proud that I wasn’t.

Two and a half years later and we are a little family trying to live and enjoy life as much as we can. Lockdown has been a challenge but luckily nursery reopened in June and Charlie was able to return to being with some of his favourite people and to continue his recovery and development in their wonderful care. To say I could not imagine the journey we are on is an understatement. Anxiety and what if’s never included this. I have had to learn so much but as he grows Charlie shows such strength and determination it cannot fail to drive you on, even in your lowest moments. There are times I feel a little sad and sorry for myself, I feel a bit cheated of the new mum experience. I only got one shot at this and I had planned out in my head, as most mothers do, what it would be like. When I feel like this I have to remind myself of the blessings we have, he is our wonderful boy and we get to love and enjoy him everyday. The anxiety of loss in my pregnancy did not become reality, he is here and he is beautiful. Sometimes there is anger that things could have been different if his condition had been found earlier, but I have no way of knowing if that reality would be better. The worst feeling that washes over me at times, when the world is quiet it sneaks into my thoughts, I feel guilt. I feel I should have known something wasn’t right, the thought of him in pain and me not knowing stabs me in the heart and I fight back tears. I try to listen as my husband tells me over and over I didn’t know, he didn’t know, it’s not my fault. Maybe one day when life is calmer and we know what his future will hold I will let go of that guilt.

He has crammed a lot into the last three years, I have tried to grasp the positives and turn the negatives on their head. It isn’t always easy but it definitely helps. I have a bit of a wicked sense of humour and that has sometimes saved me. Developmental delays are rubbish but they are all we have known and there are the occasional positives, for example you can run to the toilet with a developmentally delayed baby and they are exactly where you left them when you come back! I know it doesn’t seem like a big thing but, for a period of time, it really helps. Like I said when you are in the middle of negativity you look for any positive you can! I have kept my baby as a baby for a bit longer (albeit under stressful circumstances) and I cherish my time with him. I do not take anything for granted and although we have done some milestones twice the joy is, if anything, more sweet the second time around. We have waited longer for those special moments and they have been different to the experiences of others but the joy is indescribable. First steps with a kaye walker are very different but so amazing and most definitely worth the wait. He still has significant delays, especially in communication and this is hard. He is often violent due to his inability to communicate his wants and needs. He cannot communicate pain and equally does not seem to experience pain in the same way as others which is a constant worry. He doesn’t say Mummy or Daddy and I cannot fully express how much I want to hear him call for me and I worry that maybe he won’t and that hurts. Every sound he makes or word he forms fills us with joy, although he doesn’t seem to be following an atypical language acquisition path, but he has never been on the routine development journey so it’s hardly shocking. He learns the names for things he likes rather than functional words, he can name an owl, la la (teletubby) and Olaf but not Mummy and Daddy. We just have to have faith it will develop in time. He struggles in unfamiliar environments and lockdown has massively impacted on him in this way and we are now trying to reintroduce busy and unfamiliar places, sometimes this is hard but we keep going knowing that in the middle of the emotion we will see him smile and we know it it is worth it. His meltdowns are heartbreaking and the judgement in the eyes of others is even worse. We watch as his body twists with cramps daily and feel powerless to help, eventually he will fall asleep and his muscles will relax but until this point he breathes heavily through the pain and grimaces and as parents your heart breaks for how useless you feel. You always know in the back of your mind that the shunt is there, I sometimes feel it’s like hearing a bomb tick. So far we’ve been lucky but the stress every time he is sick or seemingly in pain or emotional is unbelieveable. I have a genuine fear of making the wrong decision and the massive implications of further brain damage or, unthinkably death that wrong decision could bring. Some days the fear grips me so tightly I can’t breathe and other days I almost forget the shunt and just take time to enjoy him. It’s a bit of a mixed bag really, some days are good and some are terrible but I think, although I have no first hand experience, that parenthood is a bit like this anyway.

Over the last two and a half years I have changed a lot, I try and live in the moment more. I have had to realise that all the worrying about the what ifs was blinding me to enjoying him and his achievements now. He will only be this age once and he is a joy to know and be around, his giggle fills my heart with happiness and if I don’t take that time to appreciate it these moments will pass unnoticed. I was described in a meeting as a “medical mum” which I felt a bit derogatory as in truth I am just a mum trying to be the best mum I can in challenging circumstances. I don’t think labels help, just the acceptance that everyone’s journey is different is enough. Charlie is a ball of contradictions and complexities. I often can’t, or don’t, explain to people what is wrong. I find tears prickle the back of my eyes when I try to explain that he cannot speak or that he has a brain injury and then I feel foolish or overdramatic. We try to live as normal a life as we can, I hope Charlie feels happy and secure in the life we have created. He recently made his first real nursery friend and I actually cried watching videos of them together and how his friend allowed Charlie to guide him by the hand and seemed to innately understand him and how happy they were together. I was always afraid of him being on the outside, comments made in professional assessments for his EHC seemed to support this fear. Phrases like “tolerates his peers” made me sad, his new found friendship gave me hope he would not always be alone. In fairness even if he doesn’t always understand them all the other children seem to embrace his differences and want to be around him. The first three years have definitely been eventful and I don’t imagine the next three will be any calmer but they have been in the main good, really good, and although it isn’t the kind of parenting journey you visualise it isn’t all bad. Yes I’d happily live without the shadow of the shunt but nothing is perfect and anyone who claims otherwise is a liar. If anything I have learnt to appreciate the small things and I guess that’s a good trick to learn. A wise man named Ferris Bueller once said “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it” I’ve always thought he had an excellent point it’s just taken me a few years to take his advice! Charlie is our rainbow and as everyone knows no good rainbow can ever come into being without a storm or two.

Two years ago, this week, our world changed forever. We were plunged into uncertainty and took our first steps into the crazy world of Hydrocephalus. Today it is two years since we attended what we thought would be a routine hospital appointment to check Charlie’s head growth, if there was one thing it wasn’t it was routine. Looking at Facebook memories around this time is hard and the post relating back to that day seems so calm considering what was unfolding, in response to someone’s question as to what was wrong, I said he had “excess fluid on his brain”. I still didn’t know the word hydrocephalus, nobody had told me. It’s very strange looking back that there was a time I didn’t know the name of the illness that has changed our lives so very much.
Two years later and things are different, very different, to how we had expected our lives to be. The thing is though different is not bad, it’s just different. Yes, there is worry, yes there is sadness but there are those things in everyone’s parenting experience. We have also seen our child achieve amazing things, from learning to roll again to mastering his walking frame, it’s been quite a journey. I have had to change, I have had to learn new things, I have had to drive his recovery. It’s tiring and emotional but it’s also rewarding. I have discovered I am stronger than I ever imagined, that I have skills I never really utilised to their full potential. I have learnt we can’t do this alone, we simply don’t have the knowledge and skills. Charlie needs much more than paediatric and neuroscience support, this illness is not just about the fluid, the ventricle sizes or even the shunt. He has an acquired brain injury, the pressure from the build up of fluid has caused this. The brain powers EVERYTHING, hurt it and it needs help to recover in the best way it can. The beauty of a child’s brain is it’s still developing, still building, still learning. Charlie lost a lot of skills he had learnt in the first few months of life and that is so sad, watching him try to relearn those skills can be heart-breaking, but he is so determined. We have found ourselves surrounded by people who help and support him in reaching his goals. It hasn’t been easy, in some cases we have been lucky and in other cases it has taken drive, persistence, google and a lot of phone calls. There was no instruction manual, we’ve had to learn on the job. I was determined to get him help and to get him help quickly. I knew it couldn’t wait, I just needed other people to agree with me. I had to challenge the established ideas that Babies could wait, that it was best to watch and wait. In the immediate period following his surgery I naively thought he would be fine; the shunt had been fitted and I thought he would just catch back up. I didn’t realise that he couldn’t catch up without a lot of help, that realisation would gradually dawn on us. We had chosen a nursery before we ever heard the word Hydrocephalus, it was a lovely place and when we visited it felt like the right fit for our baby. I was returning to work less than two months after his surgery, he would be there full time. The call I made to discuss the change in situation was terrifying, I worried what would happen if they felt Brain surgery was just too big a thing, we couldn’t afford for me to give up work and we had nobody else to care for him. I think I recall just bluntly blurting out that he was registered to start in April but he had recently had brain surgery and would that change anything, I held my breath bracing for the worst and was shocked by the calm response of the owner “ok, come in and sit with the staff. Tell them what his condition means, what they need to know and what they have to do to care for him and we’ll go from there”. It was so simple and yet it was a massive leap of faith on their part, a child with a shunt and global developmental delays is a massive responsibility but they never hesitated in saying he’s welcome here, we’ll take care of him. Whenever I think of how they accepted him without question I well up, there are no words to describe what it means to us and I genuinely think it is a very special place. Since his first visit he has loved the nursery, such an amazing place and an amazing group of people, they genuinely care. When he couldn’t move, they moved him to different areas of the room, they sat with him, they sang to him, they made sure he did not feel alone and afraid. We learnt together, I am lucky to also have some lovely friends who understand special educational needs and they offered advice and guidance on how best to support his development. The nursery could have told me I didn’t know what I was talking about, they could have felt I was overstepping but they didn’t. They moved him onto a SEND plan, they started a new tracker which both highlighted his delays but also highlighted his progress and how best to help him. They invited the professionals in, they helped us to apply for help. A lovely lady called Anna at the Rainbow Child Development Service made many referrals, she listened, she didn’t make us wait, she believed us when we said he needed help. Our first meeting with physio made me cry, at almost one he couldn’t sit independently, couldn’t roll, couldn’t crawl. The physio was so positive, she told me about neuro plasticity that although his brain was damaged it was young enough to find “new paths”. She said it was like setting off on a journey and hitting a road block, you would remap to reach your journey, and this is what his brain was capable of we just had to help him find a new route. That was the first time someone had said it could get better, given us hope and it made me cry tears of relief. It was like I’d been holding my breath and her calm certainty that things could get better made me feel like I could breathe. I had a choice, I could either allow the enormity of this to overwhelm me or I could fight. I could focus on “fixing” the damage, focus on getting him help. There have been times I’ve felt hopeless, there’s been times I’ve felt lost but the people around us have been our strength. I have cried on them at times and I have shared great moments of joy with them also. It has helped me to cope, knowing I could help him stopped me feeling so sad. I had to focus on things getting better rather than on what had gone so wrong.
The journey continues and we are constantly learning but we have achieved so much in the last two years. We know so much more and we want to share this with others. I passionately believe that the early intervention that Charlie has received has been invaluable. The nursery and their passion meant he was receiving help and support when he was still on formal support waiting lists. They opened their doors to physio’s, therapists and support services and worked so hard with Charlie. Their hard work is reflected in how far he has come. With the help of portage and other professionals we recently secured his Education and Health Care plan which was a massive relief and will help him so much in his education. He is now two and a half and he is happy, the nursery allows him to be a little boy and that makes my heart sing. When he struggles, they talk to people like the Child Brain Injury Trust and Shine and try their best to find the best ways to help him cope. Charlie is complicated, there is no instruction manual, but they make him feel safe and they let him find his way in the world. All the people involved with his recovery have been amazing and it is difficult to imagine how different things could have been. He still has difficulties and some days are harder than others, but he has come a long way. Sometimes when I think of how far he has come it is overwhelming but a lot of it came from that phone call when the nursery said they wanted him. They saved his life every bit as much as the surgeon, they gave him back his identity and his independence, they let him be a child, every day they make him smile. They are every bit as proud of him as we are and that is a special thing.
The road we travel is not simple, there are highs and lows, but we have seen such wonderful things. The pride I feel for my son and how he approaches the difficulties in his life is overwhelming. He has such drive and determination, he is inspirational in his resilience. The shunt is a dark shadow but so far, we have been lucky that we have been issue free since the day of his surgery and I pray every single day for that to continue. I used to think strength came from dealing with your problems and not needing help, I know now I was wrong. Hugh Grant said in About a Boy “every man is an island. And I stand by that. But clearly, some men are part of island chains. Below the surface of the ocean they’re actually connected”. We are an Island chain and through Charlie we have connected with some wonderful and special people and that is something to be truly grateful for.

This week it’s Hydrocephalus awareness week in the UK and it’s the perfect opportunity to give a bit of background to our story. An opportunity to try and explain what this illness is and help to spread a little awareness of our own. I know from personal experience just how much this life changing condition is unknown to so many. We had no knowledge of this illness until it literally ripped our world apart, how is it that possible for an illness which is said to affect up to 1 in 1000 babies born every year to be so unknown? An illness which is just as common as Down’s Syndrome and more prevalent than Spina Bifida or brain tumours. Hydrocephalus is the most common reason for brain surgery in children so how is it I knew nothing of it until my baby was being prepped for surgery? Sadly, the lack of knowledge of the illness is not just limited to parents like us it is unfortunately very misunderstood by professionals too. Before our little boys’ surgery, I had no idea what a “hydrocephalus baby” looked like, I now look back at pictures of our baby roughly two years ago and realise with hindsight and knowledge the signs of hydrocephalus were there to see but sadly I didn’t have that knowledge then. So how did we get here?

There are two forms of hydrocephalus in children, congenital and acquired. Congenital hydrocephalus is when a baby is born with the condition as it has developed in the womb. Acquired is when it develops at some point after birth. In our case Charlie’s condition was acquired post birth but we may never know the reason why. Charlie was born at 36 weeks with a head measuring on the 50th centile, he had no development issues in the early months of life and that can sometimes be a source of great sadness, it is unbelievably hard to see your child develop skills only to lose them and have to work so hard to get them back. On reflection it was stated to us that issues with Charlie’s head growth should have been spotted at around eight weeks, unfortunately for us that was not the case. At roughly five months we started to notice he would outgrow hats; his head was large for his age and he couldn’t sit independently. Questions were asked and some of the responses included “big head big brains” and “does his dad have a large head?” in some cases we were reassured that his development may have been affected by his slight prematurity, this was certainly the case when it came to his digestive issues and the fact he was sick quite regularly but only small amounts. As Christmas approached the novelty hats were everywhere but the age appropriate hats didn’t seem to fit. We tried a first Christmas Santa hat that was intended for 6 to 12 months, one week it fitted very snugly and only a couple of weeks later Christmas Day it would no longer fit, no way no how, it was centimetres too small. At the time we marvelled at the size of his head and asked ourselves just how big was it? Underneath the light-hearted comments we were concerned and measured his head and discovered it was 54 CM, it was so large we could not even chart it on the baby growth chart. His fontanelle was huge, like a letter box and he still was unable to sit without support in fact he even struggled in highchairs. We were worried, this couldn’t be right so we went to see a doctor and told him our concerns but unfortunately he had limited knowledge of Hydrocephalus and stated he was a big boy and he was not overly concerned, he calmly stated that he would book an appointment at the hospital, the earliest available was in four weeks which he said was quite a quick turnaround. He didn’t seem bothered, said he couldn’t see any negative markers and said to bring him back if he deteriorated. He didn’t explain what deteriorate meant. Unfortunately for Charlie he was teething and the Calpol was in some ways masking the pain from the pressure in his head and we didn’t know what we were looking for, he was happy, he was smiling, and the doctor wasn’t worried. When he stopped holding his bottle, we thought it was a phase, we had never heard of sunsetting so didn’t realise he had a downward gaze, and nobody told us to watch for it. It breaks my heart I was so clueless, I feel I failed him and the thought of the pain he must have felt and smiled through makes me sob. I sometimes look back to that visit to the doctor and I’m angry I was so naïve, I should have fought harder, I should have insisted he was seen quicker but the truth is I didn’t know and I trusted someone who should have known, someone who should not have left him to suffer.
Fast forward four weeks and we entered the paediatrician’s office for what we thought was a routine appointment, it was the moment everything changed. The paediatrician immediately saw what the GP had not, and he saw the situation was serious. Looking back, he stayed so calm, I think mainly to keep me as calm as possible. He said that he needed to see why his head was so large, it was just routine, but he wanted to check. He said it could wait but as we were there he might as well see if someone could look at it now, he called a friend, he asked for a favour. He stated that his fontanelle was “wide open” and could they ultrasound his head to see if they could see the cause of the growth, he told us to go straight over. He said after the scan to go home and he would call us after clinic with the outcome. Charlie’s head was scanned, and the doctor said simply she could see a blockage and could we take a seat while she called the paediatrician, at this point I felt fear I started to cry. She came back and told us to return straight to the paediatric clinic, I asked if Charlie was ok. She explained briefly that something was stopping fluid from draining and they needed to find out why still nobody said hydrocephalus. Randomly I recall us stopping for coffee on the way back to the clinic, but I was scared and when we got to the waiting room I couldn’t stop the tears from falling. A lovely nurse called Emma took us into a room away from the main waiting area and tried to keep me calm while we waited to see the doctor. When he had finished with his patient we went back in and he told us the fluid around Charlie’s brain was not draining properly and they needed to do some tests to find out why, he told me not to worry and this was routine (I know now that is completely untrue) he said it would be quicker to carry out the tests as an inpatient and with this in mind could we pack a bag and go straight to the children’s ward in Halifax where a bed was waiting. It all seemed very surreal, we got the bag we went to the hospital. They asked questions about him, his behaviour and why we thought there was a problem. A nurse called Heather was so lovely as I struggled to grasp what was happening, I knew something was wrong, but nobody really said what. I asked a doctor if he would be ok and she said, “we can only hope”, that one phrase was terrifying nobody would tell me what was wrong and equally it was obviously so serious they couldn’t reassure me it would be ok. They said they needed to do an MRI and if we were happy to take him home for the night we could and bring him back at 6am, again mixed signals as surely they wouldn’t allow him home if he was seriously ill. We went home, we did normal family things, we watched the Gruffalo. Early the next morning we returned to the hospital, it was snowing and Charlie’s first snow experience it’s funny the things you remember. A cot was waiting and Heather, the nurse from the previous day, had switched wards to stay with us. It was explained they would give Charlie light sedation and then take him to be scanned and Leeds were awaiting the results, the ward sister took one look at him and said “bless look he’s sunsetting” that was the first time I had heard that and had no clue what she meant. They gave Charlie his sedative and he was placed on my lap on a wheelchair and wheeled to the scanner, they then took him from me, and he looked so small. We waited, hearing the loud clicks and buzzing of the scanners. I felt sick at the thought of my little boy alone in the scanner and it felt like a lifetime until they brought him back. What followed was a blur, travelling down the M62 at 80 miles an hour in an ambulance with Charlie in my arms, feeling dizzy and sick. We arrived in Leeds with me looking worse than Charlie, stripped off despite the cold weather and being sick into a paper hat. I was in shock I just didn’t know that at the time. I can honestly say everything happened so quickly I didn’t have time to think, a surgeon told us that he needed a shunt, that he had hydrocephalus, that they didn’t know why but they would operate first and look for reasons later. There was no time to waste, the situation was critical. We were handed a thin leaflet and in this flimsy document was an attempt to explain what hydrocephalus is, what a shunt does, what happens if it fails and things to avoid. I remember my husband being saddened to read heading a football was a no go, I recall him saying that he was a boy he would want to play football. At the time we didn’t understand the massiveness of the situation, what impact it would have on all our lives and that we had much bigger issues to face than heading a football, or not as the case may be. We handed our seven month old baby over for brain surgery, I was not at all brave and it was Daddy who held him as he fell asleep. We waited patiently, we had lunch, we went for a walk. Then we returned to find our baby with bandages around his head, having him back in my arms was accompanied by the biggest feeling of relief. The nursing staff handed us a small sample tube of hair, the surgeon had requested it be kept as it was his first haircut. It was such a small act of kindness and it meant so much, in the craziness we hadn’t even considered something so “normal” as a lock of hair. The snow came down heavily outside and that was a blessing as it meant my husband could stay with us through the night. I was terrified of the beep of the machines, the sight of him with his bandages, how pale and helpless he looked. Night finally became day, he was clearly in some discomfort but seemed happy, we watched Lilo and Stitch, Daddy read Room on the Broom. A further MRI took place and no abnormalities were found with his spine, we later discovered that due to the extent of his hydrocephalus they feared a spinal abnormality was stopping the cerebrospinal fluid (CSF) from draining down the spine as it normally would. Once a spinal issue was discounted the surgeon said they could see some evidence of a bleed and they believed this or a low grade infection at some point in the first days or weeks of his life had caused the blockage. It is beyond hard to not know what caused this and I don’t think I will ever be at peace with that level of ambiguity about something so serious, so life changing. We were told he would never be able to drain the CSF without the shunt and would need it for the rest of his life. The surgeon was happy with his recovery and suggested that due to the weather we may want to go home as a family. So that’s what we did, we wrapped our baby up against the cold, took note of the times of when the next doses of painkillers were due, when we could remove the bandages and left for home. We took our thin leaflet and our scant understanding of what had happened and took the first steps into the next chapter of our story. We knew very little, we didn’t know that the illness would affect every element of Charlie’s life, we thought he was fixed, we naively thought that’s what the shunt did. The following day we went to music class with him, we were thinking things would go back to normal now. He would catch back up and this would be a blip. Hydrocephalus is not a blip, it is all consuming, it changes everything. Sadly, we had to find our way without directions and for a little while we were lost in the dark with no torch. We stumbled, we got lost, but along the way we found some amazing people who either helped us to understand or who learnt with us and helped to rebuild Charlie’s life. It’s a rollercoaster, I am sad that I didn’t know the signs, I am sad that others didn’t see the problem until it was nearly too late, but I have also been enriched by the people we have met and the beauty in my child and his resilience. We have suffered difficulty, but we have also been blessed to meet people that believe in our boy and want to help him in any way they can. I want everyone to know what this illness is, to know the signs and symptoms but also to understand the fallout of this illness and its lasting impact. For the sake of our amazing little boy we strive to make change and hope we can make a difference. The handbook needs to be bigger, the directions for help clearer. Together we will move mountains.

It’s taken a while to write the next installment of our story, so much to say but no idea where to start. In honesty I don’t think we have fully understood what has happened ourselves, we have been carried along on a wave of activity without stopping or thinking. It’s been hard, at times it’s been a fight but it kept us busy. Charlie is wonderful and his achievements bring joy the like of which I have never known before, but I feel drained. I have felt I should cope better, in fact I end a lot of statements with “he’s fine, I’m coping”, that’s not strictly true. He is wonderful but he is not fine, he still has a long way to go and I may be coping (just) but I seem to wake and go to sleep with a constant headache. I feel tears are unnecessary and feel ashamed to cry, like I’m being a bit of a drama queen. I’m spinning so many plates I could be in a circus and the fear of them falling is terrifying, just one mistake and it all topples down. I recently had an unexpected bit of clarity, it all stemmed from a conversation which started as most others had, I had planned in my head to explain to someone I was aware I was anxious but I was managing it and it was fine. It seemed simple, so easy to say in your head but what came out was very different. I felt my voice break and no matter how I fought it my eyes filled with tears, I couldn’t speak, I couldn’t stop the tears, I sobbed. I sat and explained to this stranger my inner fears, that my baby was ill, that he would always be ill and that I was petrified to lose him. I explained this and the delays and the constant worry that I would again miss something leading to devastating outcomes. I explained the pain I felt at the struggles he faces and the absolute joy he brings. When I finished I apologised, repeatedly, for my dramatic outpourings and she said something new “you need to be kinder to yourself”. So simple were the words and I must have looked confused, I was not the one suffering why should I deserve kindness? She asked me to imagine another mother telling me of her child’s brain surgery and the impact of that on their life, would I think it strange that she should cry? Then I realised, what has happened isn’t just a bump in the road it is life changing and some days my heart breaks for the situations he finds himself in, other days I burst with pride and other days I watch him like he is a ticking bomb. My emotions are heightened at all times. It’s hard, I think I now realise it’s ok to say that. It’s hard to see him struggle with sensory overload, we do what we can to manage this and help him but it’s not always easy for him. It’s even worse to see the people around him judge or pity. A very busy elves workshop on Christmas eve led to a very emotional little boy, he cried, he wanted to run away and there was nowhere to go. Daddy held him, he sobbed and fought his embrace, it was heartbreaking but what was worse was the row of mums behind nudging each other and looking on as he struggled. I wanted to cry with him (I did later) I wanted them to know how hard he worked, how wonderful he was, I wanted to scream “he’s had brain surgery”. I know you can’t see his scars and I can’t give out a short chronology of his past to everyone (nor would I want to, brain surgery sounds awfully dramatic when just dropped into conversation) but I hope if their children are ever afraid or upset that there is someone kinder around them. People judge or worse look with eyes of pity, that look of “thank goodness it isn’t me”. I hate to read the various professional reports or acknowledge his massive developmental delays, it kills me he can’t tell me when he’s in pain. I can’t expect people to understand, he looks “ok” so how could things be bad. I can’t explain the cloud that always follows us, the fear of shunt failure. I can’t describe the terror when I see him fall (as any toddler does) or when the nursery calls to say he’s bumped his head. I can’t describe the fear that grips so tightly I cannot breathe, I sob inconsolably and I cannot physically breathe. It’s hard, it’s horrible and it breaks my heart but in the middle of this mess is a beautiful, wonderful little boy. A little boy with a smile (that he uses frequently) that lights up a room, blue eyes that sparkle and a giggle that makes my heart sing. He has drive and passion that is truly inspirational and I am so proud to be his Mummy, I will fight every day to get him the help and support he needs and I will always know nobody could have fought longer or harder for him. A small part of me may never forgive those who caused him suffering through their actions (or lack of) but I can’t let this consume me or I will be blinded to the true joy he brings. It is not shameful to admit it’s hard, say it, shout it if you need to and then get up, brush yourself off and carry on. I am allowed to be sad, I am allowed to be angry but if I don’t talk, if I hold it in it will damage me and I will forget to focus on the little boy in the middle of the hurricane. He is my rainbow and we will weather the storm together.
Be kinder, either to yourself if you’re struggling or to that child or parent you see struggling out and about. Don’t judge, don’t put unrealistic expectations on yourself or others. Accept life is far from perfect and there is beauty in imperfection. Be Kind, always, you never know the battles others are fighting.

Thanks for joining me!

I suppose it’s important to give a bit of background as to why I’m doing this. Short answer, I’m not entirely sure yet! I know that seems like a pointless answer but so much has happened in such a short space of time I’m hoping that writing it down makes some sense of it. Maybe somewhere in the middle of sharing our story we can help others making the same journey. Getting a diagnosis of lifelong illness for your child is shattering, scary and life changing. It’s not what you would plan, it’s a journey you didn’t intend to take that doesn’t have satnav directions. Initially it’s like finding your way in a dark room, there are barriers and obstacles that you can’t see and have no idea where you will hit them. It’s the great unknown and sometimes in the short term it becomes more scary the more you know and then strangely it starts to become the norm. I’ll be honest at times I’ve been sad, not with what I’ve got but with what I lost if that makes sense. When you have a baby you make plans, you don’t ever question your expectations you make plans about their future. As a new mum you join baby groups and a constant cycle of comparison begins, did your baby smile yet, coo, roll over, sit up? You think you know the path you will follow, you’ve bought the pack of milestone cards to mark each momentous occasion, then things seem to go a bit off course. Your baby did roll but isn’t doing it any more, he can’t sit up. You start to feel a little bit out of step with the other mums and you feel the first bite of panic but you tell yourself it’s ok, your baby will get there, it will just take time. You wait, you watch, you encourage, you do everything you think you should and things aren’t getting better and there is a twinge of sadness watching his friends learning new skills and developing in the way you had imagined your own precious baby would. You ask questions, you are reassured it’s all ok so when you finally sit in a room with someone who tells you that your beautiful boy needs brain surgery all your plans are gone you just don’t necessarily fully grasp it at that moment. You are swept up in a whirlwind that moves so quickly you can barely breathe, they operate and in a naïve way you think “ok they’ve fixed him”. They send him home with a small booklet of what to look for if his shunt they have fitted fails and at that moment that seems to be the only issue, what if it fails. There is no real discussion of what it will mean to him and his development, just an understanding that he shouldn’t play rugby, head footballs or go scuba diving. You know his head is big but in the words of the surgeon “as long as the surgery was a success the growth will stop and he’ll grow into it”. So it’s ok, they’ve sent him home it all seems very casual so now things can return to following the plan right? Nope entirely wrong! “Growing into your head” and recovering from acquired brain injury is very much more complex than you thought when they sent your baby home after surgery. It is hard, it takes help, it takes fight. We are lucky that during this journey we have met some amazing people who have helped us to deal with and understand what we are dealing with, they are the maps where the satnav failed us. These people saved Charlie’s life every bit as much as the surgeon, their devotion and hard work gave him back what he lost and every day I am thankful for their place in our lives and I hope to talk more about this in my blog going forward. I recall slowly realising that things weren’t “fixed” just because he had the shunt and deciding I had to “fix him”. I know that sounds awful as he’s absolutely wonderful but I remember saying on one of many phonecalls that he was born perfect and they broke him and that someone had to help me fix him, I was screaming for help, I was lost, I’m actually crying writing those words as I don’t think I realised just how lost I was at the time. I know I’ve kind of wandered off track a little but that is the thing about this journey, it does that and you kind of have to roll with it. So to be honest I’ve come to realise it’s ok to be sad sometimes, I lost something the day we walked into that paediatricians office and it’s not something I’ll ever get back. I also know that having Charlie in my life and all those who support and help him has enriched my experience as a parent a million times over. His determination and will to succeed is captivating and I burst with pride daily and feel blessed to be his mummy. The label disabled was a hard one to accept but as a wise friend said “don’t focus on that word, use differently abled and remember he won’t make you any less proud, in fact you will be so proud because he will work so hard to reach his goals” and she was one hundred percent right (although in fairness in nearly thirty years I’ve never known her to be wrong). Maybe one day someone will see Charlie’s story and be helped by the journey we take. I hope my first attempt at blogging makes some sense and maybe next time I’ll start at the beginning because in the words of Julie Andrews “it’s a very good place to start”…………………..

Good company in a journey makes the way seem shorter. — Izaak Walton