Observing Woody over the last few days, especially when he has been at home during the day at the weekend, it’s easy to see his constant frustration. He is absolutely furious that he cannot do the things he wants to do and say the things he wants to say. I was washing up in the kitchen and could hear his loud whining noise in the other room. It’s a high pitched anxiety-inducing noise, often synonymous with toddlers. I heard this noise over and over and thought “what does this remind me of?”.

It takes me back to this time last year when we had endured several months of lockdown and Woody was absolutely desperate to be able to speak. He became really whiney and got angry every time someone else spoke, when they weren’t engaging with him. At the time, it was utterly intolerable but we observed later that, once his speech developed, this whining noise and anger subsided. He could finally say what he had been thinking, after such a long time. A happier, more playful Woody emerged towards the end of last summer (albeit with a smattering of jealousy as his wee sister entered our world).

And now, my poor boy has lost his words again – words that he had only just found. On top of that, he has lost the use of his fine motor skills and some of his eye sight. So of course, the frustration is back, tenfold. I believe that Woody’s cognition and intelligence is all there and what has misaligned is all the function that should go with that. (does anyone remember the chocolate game, where you had to eat chocolate with a knife and fork, whilst wearing oven mitts – so very frustrating!).

Thinking about Woody’s whole life so far, I think this has always been the case. His intelligence (especially emotional intelligence) has always been there but he’s not been able to put that into words and actions. I think he’s been trapped inside his own head for a very long time and my belief is that this very rare portosystemic shunt is the main contributor.

I have read more and more about these shunts and how they can affect children. I think it made his jaundice so bad, his cardiac wound infection so bad, his sepsis so bad. And I think it has massively impeded his overall development.

Today, when I collected Robin (11 months) from nursery, the staff were gushing about how she has mastered crawling and wants to talk, and eats so well. Robin has been lucky enough to understand her world and learn her skills in a “normal” way. She hasn’t had the obstacles Woody has had and quite honestly, we haven’t had to work nearly as hard to allow Robin’s skills to flourish. This comparison makes it clear to me that so many of Woody’s struggles have been down to something in his anatomy that we simply didn’t know was there, allowing toxins to circulate around his body and his brain ever since he was born.

Now that we know, I am ready to push with every fibre of my being to get Woody the intervention he needs – to close that shunt and allow him the chance to live and learn as everyone else does. Woody is a fighter, more so than anyone I know, but he deserves his time to just enjoy life, to not have to fight so hard, to bring all his intelligence, wit and spark to the surface, unchallenged. And Stewart and I will be the people to make that happen for him as soon as we possibly can. He has been through enough. And so have I.

I have spent the last three and a half years never being able to shake the feeling that I must have done something wrong as a parent, because Woody couldn’t do this, or that. Life was always about waiting for the next crisis, the next failed assessment and dealing with an angry, frustrated boy who I could not pacify. It’s been the hardest time of my life and, as a family, we all deserve a break from that. We all deserve some calm, happy family time and I will fight for Woody to get this shunt fixed so we can get there. I’m grateful that this defect was found but I will only rest properly when it’s been fixed.

A common theme of parenthood is constant guilt. The feeling that you aren’t doing enough for your child. Not enough attention, stimulation, outings, activities, etc. Parenthood is one of those jobs where there is no clear marker that tells you “you are enough”. Unlike in the working world, where there are sales targets, profit margins, customer satisfaction surveys, regular appraisals, the only appraisers in parenthood are your children and yourself.

I know if my children could appraise me, for the most part, they’d give positive feedback. Probably some complaints about a lack of snacks or my inability to cope when stressed, but overall, I know I’m doing my best.

But today, I’m finding that I’m a tough appraiser of myself. I feel my heart ache with guilt at the idea of leaving Robin at nursery, of leaving Woody at hospital, and of leaving Stewart to cover afternoons and evenings by himself. It’s crushing me that I feel inadequate at every single turn. I can’t care for my family and myself properly – that’s what it boils down to.

Woody has been in hospital for 7 weeks now and I don’t know how to stop feeling like this. I want my family to not suffer – that’s all I want. And I can’t seem to make that happen. Someone is always having to pick up the slack and we’re broken by exhaustion.

I don’t know when that’s going to get better. What if it never does?

When Woody was about 9 weeks old, he was admitted to hospital under the vague term “failure to thrive”. Quickly this became a cardiac issue as he started to have cyanotic spells (heart spasms with very low oxygen saturations) and his case became an emergency. I felt like I was living in a nightmare and, as I tend to do when deep in trauma, I felt sheer dissociation from my life – like it wasn’t really my life, it was all a bad dream.

I remember it being a Friday evening and walking back to the old children’s hospital through the resident Marchmont area of Edinburgh. I looked at the soft lighting in people’s living room windows and longed to be like them – at home watching a movie, waiting for a take away, heading out for a drink at the pub. I longed for normality and for this nightmare to be someone else’s.

Even now, after three years and more hospital admissions than I can count, after jaundice, spells, heart surgery, wound infections, croup, sepsis and now this encephalopathy – I still don’t really recognise this life as my own and spend my time fantasising about what it might be like to have a “normal life”.

I see the doctors and nurses finish their shifts and head off home. I imagine what that might look like – a happy, secure place. Somewhere to relax and to have fun, make plans for the weekend, settle down to watch a movie.

I’m ashamed to say, I resent everyone who gets to go home at the end of the day and not leave their loved ones in hospital. It’s irrational I know but I do feel bitterness, like they are somehow duplicitous for helping my child during the day and going home to their real life at night. It’s such an unfair thing to feel and comes from longing so desperately for a normal family life.

But there will be people who look at my life and feel the same – wishing their life was more like mine. I work for a terminal illness charity. How many supporters who have just lost someone dear to them have watched me walk away from their houses, wishing to have my life – not in the shadow of loss and sadness?

After all, my son is recovering and these professionals are all doing their jobs and doing them very well. It’s not really about them, it’s about me and what I yearn for.

The difficulty with waiting for a brain to recover is that you can’t see it heal in the same way you can with a broken bone on an X-ray. There is no MRI scan that can accurately depict how well Woody is recovering, nor give any kind of sign whether that recovery will ever be complete.

Each night, I go to sleep hoping that tomorrow will see a great improvement in Woody although I’m starting to realise that’s not really how this works. There are tiny signs of progress every day that are much more apparent to the nurses who have had a week of annual leave and comment on how far Woody has come.

For Stewart and I, it’s hard to see that progress. Or if we do see it, we wonder if it will stop short of where Woody was before. Does progress promise more progress, or does it suggest he’s getting close to a new normal? The latter really terrifies me.

Yesterday morning, Woody was really grumpy. I couldn’t do anything to make him happy and I was frustrated and fed up. He didn’t want to participate in his physio session at all and was just annoyed with the world.

Together with Opa (his grandpa), we took him outside and let him sit on the grass to enjoy some fresh air and snacks. Almost immediately, he got to his feet into a standing position, which he had only done a couple of times inside. Then, little by little, he started to walk. He was a little off balance and tripped a couple of times but he was walking and really enjoying moving around.

It felt like a bit of a miracle that he could go from refusing to put his feet down in a physio session, to walking around unsupported on the grass. He spotted two ambulances parked up and was desperately trying to walk to them. It baffles me how his brain and body can do this.

And yet, I’m left feeling uneasy and I can’t explain why. Part of me thinks “well, he can do this so he can do anything” and that should shower me in hope and optimism.

But the other part thinks “if he can now walk so capably, is his brain choosing to let go of speech, of sight, of fine motor skills and coordination?”. Will one achievement be at the expense of another? And no-one can answer that.

I’m desperate for him to be able to see everything properly again and for him to be able to play with his toys and have a drink from his cup (all his fluid intake is currently via NG tube). He’s visibly upset and frustrated that he can’t do these things. Today, while he was at home, he saw his sister playing with toys and he couldn’t do it. It broke my heart a little bit. Is this a reality he’s going to need to come to terms with? Or will the frustration fuel him to keep fighting?

So we carry on this relentless life, propped up by our friends and family, hoping that as each day passes, a little more of Woody is returning, bit by bit. I would rather it happened slowly than not at all but it is very hard to keep the faith that full recovery is possible when there is no way of predicting, nor measuring.

The sunflower that was once a tiny seed is now growing so tall, almost taller than me. I wish I could watch Woody’s neural pathways form and grow in the same way. I wish there was even some fixed precedent that could tell us “well, if he can do this in six weeks, then he’ll definitely get all his skills back”.

But that’s not possible. It quiet, constant faith. And time.

I wrote this post yesterday during the worst slump I’ve had. And even though I called the post “No filter”, I did filter it. I didn’t publish it, I just saved it in drafts. A bit like writing a long Facebook post and deleting it again (I also did that yesterday).

Why am I so much more reluctant to post on the really difficult days? Not every day can be a celebration but I only want to share the positive content and this doesn’t paint a very accurate picture of my life just now. The social media filter is alive and well.

So here it is, yesterday’s post. I’m not going to amend a word of it…

I’ve hit a real low. Like, really really low. I’m exhausted, frustrated, terrified and absolutely at crisis point. There is no point in sugar coating this or adding some social media sheen – I am struggling and I don’t know how to help myself. I don’t know how to give myself the care I need when I have to be at the hospital with Woody or at home with Robin all the time.

I’m spent – physically, emotionally, mentally. And I don’t know what to do.

Any reserves I can scrape together go to my children, not even to my struggling husband. There is nothing left for me.

The worst part is that we don’t know how long we have to endure this torturous life and what our normal will be, when it arrives.

I’m scared because I’m not coping anymore.

“Reaching out” has become a very popular term over the last few years. It gets used in business speak as a gentler version of “ask for”, “connect with” or “collaborate with”. But as I suspect The Four Tops had in mind, I see it as a hand stretched out looking to be held, to be pulled out of the rubble, to be guided to a safe place.

To me, reaching out is the need to be rescued, whether on a small or or large scale.

Over the last few years, I have become so much better at reaching out and asking for help. It’s not been an easy thing for me to learn as I’ve previously been pretty self sufficient and have been happy to give help, but not as comfortable with receiving it. But of course, things have changed and now I appreciate the importance of asking for help from those I trust, not only for sheer survival but to maintain some standard of wellbeing during the storm.

And here’s the thing – I’m lucky to be surrounded by people who care about me and who want to help. I keep repeating to myself that I am not a burden to them, I’m not an imposition. I’m a friend in desperate need, reaching out and always finding a hand to haul me back out of a dark place.

As well as getting the support I need, asking for help requires me to pull down any barriers (pride, privacy, etc) and open myself and my world up to those around me. That’s a good thing. That’s where real connections and relationships are formed. My next door neighbour has quickly become one of my dearest friends, primarily because a) she has been so wonderfully willing to help with anything I need and b) I can be completely open with her and she understands with no judgement. How bloody lucky am I?

This morning, I took the act of “reaching out” one step further. I dropped Robin at nursery (tears as usual) and as I came out, one of Woody’s pals was being dropped off by his mum. I watched them arrive as I was about to drive away and tears sprang to my eyes. I felt deep loss of not being able to drop Woody off, of knowing he’s not seeing his friends, of losing (hopefully temporarily) our normal life.

I sat for a minute and got back out of the car and went over to the mum to ask her a favour. I explained Woody’s situation and how much he loves his little friend and I asked if they might be able to put together a short video message or something similar.

Of course, this fellow mum was more than obliging, full of sympathy and willingness to help however she can, even though I’d never met her before. She also said that her son talks about Woody and she had no idea he wasn’t around. This was good to hear – good to know he’s not been forgotten, that he still belongs.

Even a few weeks ago, I don’t think I would have taken that step to ask for something like that. But, I’ve changed. I know Woody needs to remember his friends and how they make him feel. I don’t want him to feel forgotten and the more positive connections I can make for him, the better his brain will recover. I’m not too proud to make that happen, far from it.

I never know where the next dose of kindness will come from – whether it’s a “reaching out” rescue, or a surprise cup of tea and scone brought to me in ICU. But each and every one helps keep me afloat, like a puff of air re-inflating my sagging life jacket to keep my head just above the water, keep me breathing.

If you’re reading this and you know me – thank you for being there, for not letting me drown. Please stay nearby and keep a look out for me, there are more choppy waters to come.

I should be feeling good about today. Woody managed to eat something (albeit melty sticks, Pom Bears and chocolate buttons) and as suspected, he only wants to eat when he can feed himself.

But what I’m feeling is anger. I’ve felt dismissed by doctors today and made to feel like a nuisance. I’ve been spoken to rudely, I’ve been ignored. I’ve watched a doctor look at my husband and not at me when answering a question I asked.

I’ve had to suggest that standing by a door in an empty cubicle is no way to have a long sought after meeting with a doctor about my child’s condition.

I’ve had to keep my phone in my pocket that contains all the sensible and well researched questions I have because the doctor wouldn’t give me the chance to ask them.

Looking back on yesterday’s thoughts about gut instinct, under these circumstances, it wouldn’t take much for a mother to feel a very strong instinct about her child and have to swallow it down and try to forget about it because it’s just too damn hard to be heard. That makes me very angry.

On the plus side, Woody pulled off a great Skater Boy look for his EEG today.

There is a lot of chat when you first become a mum about listening to your instincts in terms of recognising the needs of your baby. Like many things when Woody was small, I found this practice difficult to apply as I was riddled with self doubt. From what to feed him to how to dress him, from playing, to his health. There were (and still are) so many medical professionals in his world that I always looked to them rather than myself for the answers.

I feel differently now. I feel more confident in my own observations and am more assertive to make sure I’m listened to and taken seriously.

Looking back, my instinct was always correct when it came to Woody’s health but I didn’t know how to vocalise it and in many ways, I think I let Woody down in this way.

Putting this latest puzzle together with Woody, I have a very strong sense about what has happened and why. I’m not medical and Woody’s doctors may find these hunches annoying and impeding. BUT I’m determined not to let Woody down anymore.

I’ve been doing a lot of research over the weekend about the portosystemic shunt and I now have many questions to be answered. My son deserves for his advocate to have all the information available so that he has the best chance of recovery and a full life going forward. I will stand my ground in front of a panel of professors if I have to, not to maintain that I know better than them, but to ensure that all possibilities are being properly considered.

I’ve been thinking about something a bit more abstract as well…

From the moment Woody was born, my mental health collapsed. And it has never fully recovered. What if, in a weird way, my head knew that something else was wrong with his health and in need of repair? Not just his heart? Is it possible for mama instincts to run that deep and keep me alert and vigilant because my son was always at risk of getting more sick than other children due to the shunt?

I’m aware that this all sounds a bit impalpable and unlikely but I can’t shake the feeling that this is what has happened to me. And I suppose this is why I’m so diligently researching and drawing on all my networks and resources to make the best care plan for Woody.

The last few days have been quite overwhelming. Woody is progressing really well. He’s particularly strong in his legs now and his arms and hands are slowly getting more coordination. He’s also trying to verbalise more. It’s all really slow progress and because it’s slow, it’s easy to miss how far he has already come. The doctors are really pleased with how he’s doing. They can’t make any guarantees about his recovery, of course, but so far so good.

What we have been told is that if Woody continues to respond so well to the therapies in the hospital, it means he’s more likely to be an inpatient for longer. It seems back-to-front but to give him the best chance of a full recovery, they would want to keep him close to the full suite of support, which makes sense. I’m desperate to get him home but not as much as I’m desperate for him to fully recover.

Woody’s repeat MRI shows some recovery in his brain which is what we would have expected. Although I think his physical progress is the better indicator anyway.

The neurologist told me today that music can be really good for rebuilding the brain so we are trying to play Woody lots of music. Over the last couple of days, volunteer musicians have been on the ward and Woody has really enjoyed listening to the music. They even played him “You got a friend in me” from Toy Story before they even knew his name!

We got a chair for Woody that can go outside so we’ve been on a few adventures in the hospital grounds. He’s definitely enjoying this, especially seeing the cars and buses go by. He got to see his little sister for the first time in a month today although he didn’t really seem to react much. I think maybe we expected him to be more excited and responsive than he was. That was quite sad but I know their relationship will rebuild. I have no fears at all about that.

And in terms of understanding what has happened to Woody over the last few weeks, the doctors are back to thinking that the portosystemic shunt has played a major role. Seemingly, paraflu along with steroids for croup and possible constipation and dehydration could have produced a lot of proteins in the body which then produce a lot of ammonia in the blood. It’s looking likely that Woody’s ammonia level rocketed during his first few days in hospital and that’s what made his brain very unwell. By the time they even considered that he may have this shunt and should get his ammonia levels checked, they had probably already come down quite a bit.

It’s all very complicated and technical but it does make a lot of sense to me. Both in terms of why he suddenly deteriorated after a bout of croup but also why he often gets so unwell and potentially even explaining his developmental delay.

I’m not sure we’ll ever know 100% that this is what happened but it does seem very likely. I’m constantly going over all the information and trying to figure out what could have caused what and what it all could mean. This resulted in another colour coded mind map to try to make sense of it all.

Really I just want to get Woody to a stage of good recovery and find out what plan there is for a possible repair for this shunt. I believe it’s been causing Woody problems for his whole life and I just want him to have an easier and safer life. He really deserves that.

We had another serious incident on the ward last night which I’m not going into here. We were very upset and angry and honestly, we just didn’t need any more stress. We don’t expect perfection but some standards have not been met. What I will say is that the hospital management are taking our concerns over some of Woody’s care very seriously.

So it’s been a bumpy few days. It’s a constant rollercoaster and we’re just having to ride the highs and the lows. Most of Woody’s recovery depends on nothing but time. So we have to sit tight, be there for him and let time do its thing.