I could never stick to writing a diary. Not because I didn’t know what to write but because I didn’t know what not to write. I could scribble down my thoughts and reflections all day long and I’d never run out of words (this won’t surprise my family or friends).
But with this blog, I think I’ve got to a point where I could keep posting more and more about my life, Woody, family, everything that has happened and everything that might happen. But that wasn’t the purpose of this blog. I wanted to keep people updated and keep my own thoughts organised during a truly awful time.
Thank goodness, the worst is behind us (for now) so I think it’s time to stop writing and accept that I may come back to it when we hit our next hurdle (it’s a when, not an if).
Ever since that time in early June when Woody became so dangerously ill and no-one knew why, I’ve gone to sleep hugging one of his sleep-suits from when he was a newborn. Every night for over six months.
It was our favourite one and we called him “Alpine Woody” when he wore it.
Night after night, I went to sleep without my little boy and I clung to this sleep-suit to feel close to him.
My boy is back – he’s sleeping safely in his bed. He still has many challenges but he has recovered so well so far. I think it’s time to put the sleep suit away and focus on the now and the future.
Thank you for reading and for caring. You may see me back here at some point.
When struggles weigh you down, when you lack sleep and life feels like a constant battle, it’s impossible to see the positives shining through the shadows.
Last night, I was gifted the ultimate dream for a mum – nope, not Ryan Gosling – but a night on my own in a hotel room. Just me, the TV, dinner in my room and no children clambering on me and making demands.
It’s given me a little bit of space to think and a bit of time to write – again, it’s been about a month since I posted anything. Sorry about that.
I’m not going to play things down – life is still really, really hard. Both children need so much from us all the time and they often see each other as a threat to our attention. We are constantly tending to one or both children or trying our best toddler level diplomacy skills to explain why mummy can’t hold a shreddie, a bottle of juice, a fruit pouch, the remote control, while feeding a one year old and cuddling a three year old all at once.
A brief moment when no-one was touching me
It is non stop.
Except for this morning when I have quiet and calm and my body is left alone.
Perhaps our expectations were too great but Stewart and I are still desperately exhausted. And that’s with Woody now back to his usual hours at nursery. We are both working full time and trying to do nice family things at the weekends. Our relationship has borne the brunt of this relentlessness. We recognise it but haven’t found a proper way to fix it yet.
However – we have started to feel gratitude for the good things and that sometimes recharges us enough to persevere.
Woody is enjoying nursery so much. He has progressed a lot since going back in terms of relationships, emotional regulation, ability to play, speech and physical coordination.
Clambering up to look out of the nursery windowSplashing in muddy puddles
He still has a tendency to clench up and grit teeth when he’s overly frustrated or excited and sometimes this results in him pinching or pulling hair, etc. He doesn’t mean it, he just hasn’t got the ability to regulate the surge of feeling at that time. However, we have to be careful when he’s feeling like that around Bobbie as he often pulls her hair in these instances. Interestingly, he doesn’t do this at nursery, as far as we know. So there is a distinction with his behaviour at home and at nursery, showing a degree of awareness of social rules.
Bobbie is just about walking now and keen to explore and climb everywhere. She is a very helpful reminder for us that the difference in learning between her and her brother are nothing to do with what we have or haven’t done. We now know so much about Woody’s body and brain and it explains so much.
Bobbie having a browse through my fundraising magazine
But, the joy in watching them both learn (or re-learn) is lovely. Woody now has his NG tube out and we have started taking him swimming again. After six months out of the pool, we expected him to be a bit fearful but he couldn’t wait to get in, splash about, go underwater, blow bubbles, etc. He couldn’t get enough and it was a pleasure to see him so happy and unbelievably confident. He’s really surprised us.
Even just seeing his face without the NG tube, no more syringes and PH strips – as these things fall away, we are closer to “normal” life.
We’re starting to accept that we will always have to consider Woody’s specific needs and abilities when it comes to what he can do. I don’t even know what I mean by this yet but I imagine, he may always be a bit different to his peers. But as he rediscovers the things that make him happy and confident, he again becomes the boy that he has always been – but who we were worried might be lost forever.
Thank goodness, he is still there. The exact same boy.
Gratitude is a very powerful thing. I’m grateful for many things including:
My husband
My children
Our families
Our friends
Secure jobs
Woody’s slow but clear recovery
An excellent nursery
A wonderful childminder
A lovely home
Excellent medical care
The ability to advocate for our children
Something else that powers my gratitude is my job. I see exhausted families come and go all the time at Ronald McDonald House. They put on a brave face when they see us – I recognise it because I used to use it. But underneath, they are traumatised, desperately worried, far from home, tired, hungry, confused and lost.
Every day at work is a reminder that right now, that isn’t me. It makes me grateful and also motivates me to do whatever I can to make life even a tiny bit easier for these families.
As time passes, it’s easy to forget quite how awful hospital life is when your child is unwell. So I re-read earlier posts in this blog the other day and it all came back to me. The absolute anguish of every minute. I felt it in my heart and all the way to my fingertips. I don’t want to forget the severity of that feeling because I don’t want to lose sight of how much better life is now.
I haven’t written a post for almost a month. I’ve been getting stuck into my new job which I really enjoy but is full-on, whilst still juggling a complicated home and family life. Woody has been increasing his hours at nursery and is doing very well, although he does seem tired by the end of the day. I’m really proud of how he is doing. He is trying to vocalise more and his confidence in moving around is much better. The use of his right hand is still pretty minimal but we hope that more time will help this return.
Overall, things have been going in the right direction but we still have no definite plan for the defect (the portosystemic shunt) that they found. Woody’s assessment in Birmingham showed that if they were to close the shunt, the pressures to his liver would be dangerously high. There is the possibility of a partial closure but that would still carry high risk and they would need to weigh this up against the potential benefits.
I’ve been contacting a few people who specialise in this defect and we have a call coming up with a doctor in Switzerland who has dealt with a case similar to Woody. I just want to gather as much information and evidence as possible before any decision is finalised. Because this shunt is rare and each case seems to be so unique, it’s very difficult to apply any previous case histories to Woody.
And how are the Zollinger family? Stewart and I are exhausted. We haven’t stopped reeling from everything and we certainly haven’t recovered from the trauma and upset of it all. We have been struggling as a couple to understand each other and be there for one another. Sometimes it’s like we exist on two very different planes and only come together for the children. It feels like we’re in a constant spin of hectic daily life, full time jobs, medical appointments and information, never-ending worry and very, very little sleep. We’re shattered and a bit lost beneath everything.
Woody is getting along well and surprising everyone with how well he is coping at nursery. He has re-formed some of his friendships and it is obvious he feels safe and happy while he is there. However, he struggles on many counts with daily life. He can’t put into words what he is thinking and feeling. He can’t coordinate both hands together, nor can he really use his right hand at all. He can’t regulate his big emotions very well, which means he can lash out at us or his sister when he is frustrated or irritated. Life is not easy for him. It never has been, but he’s had such a significant setback.
He still has his NG tube in but we’ve been trying to see if he can drink more himself if we stop/reduce the water we give him via the tube. Some days, he drinks really well and we’re confident that the tube can come out soon. But some days, he’s very unwilling to drink and then we feel like we’re getting nowhere.
Essentially, everything is a fight. And fighting is tiring. It’s a fight to get Woody to drink, to eat, to speak, to be gentle with his sister, to play, etc etc. Nothing comes easily and quite honestly, with Woody, it never has.
And this is where Robin plays a huge part. Robin has been lucky enough to follow a much more straightforward path in terms of health, growth and development. We watch her learn to move, to walk, to talk, to socialise and to problem solve with such ease. We never experienced that with Woody. Everything he learned took a long time and a huge amount of effort from him and from us. Robin’s ability to learn so much with less effort is a huge eye-opener for us. We can now see what this part of parenthood “should” feel like – what it would have been like for Woody had it not been for all his health complexities.
What it shows me is how hard Stewart and I are working with Woody all the time and why we have so often wondered why we appear to be struggling more than other families.
Today, I have also reflected about the future. I have to stop fighting to get Woody levelled up with his peers. That’s something I’ve been fighting for almost since the moment he was born but he’s always been “behind”. The difference now is that we know more about Woody’s body and why his development has been slower.
We don’t know what Woody’s future is going to look like. How much more will his brain and body recover? Will he have another one these brain insults at some point? Will they intervene with the shunt at all? We don’t know if he’ll cope with school, if he’ll be able to learn and play like the other children, if he’ll be able to control his emotions or even express in words how he’s feeling.
So maybe it’s time to stop fighting, to call a truce and allow ourselves to enjoy watching Woody grow and learn at whatever pace he can. We don’t fight for Robin in the same way which means we tend to enjoy her little achievements a bit more (she took a couple of wobbly steps on her own today!).
I need to accept that Woody is far from “neuro-normal” and that may always be the case to some degree. We will have to adapt to his needs as they arise. But I don’t want to lose the fun and the joy of his childhood because we’re so hellbent on a complete recovery. Even if Woody could recover fully from the last few months, he still had significant developmental delay. The only difference is that we now have a good idea as to why that is.
Through my job, I see families in crisis. I see them distraught, terrified and exhausted when their child is unwell, not knowing if they’ll ever take them home. I also see them buzzing with joy and relief when their child opens their eyes, or moves a finger.
We are lucky enough to be at home with our children. We can hold them and make them laugh. We can teach them and show them things to make their world even better. We can watch them grow and learn in whatever way works for them. Life has not taken us on a path that we expected but we can either follow that path vigilant, angry and ready to fight. Or we can all hold hands and take a stroll at our own pace, skip, sing, eat snacks and take in the scenery.
There are times when it’s hard to see the bigger picture. I know I should be grateful for many things – for Woody’s incredible recovery so far, for our excellent NHS, for the wonderful support from our friends and family.
I AM grateful for all these things but they don’t stop me finding myself in some pretty miserable slumps.
This weekend has been hard. We thought it would be a nice idea to go to the zoo yesterday. We’d kindly been given tickets from the play worker on the neurology ward to use when Woody was well enough. The sun was shining and it seemed like a good plan.
Very very quickly, reality hit. Woody was unhappy and complaining throughout. He wouldn’t walk anywhere, he was whining and screaming. He showed no interest in the animals and only brightened up when he a) got a piece of chocolate and b) saw a digger.
I know I should chalk this one up to one of those shit parenting experiences – one that we’ll shrug and laugh about in days to come. But it was a lot more than that.
I looked around at all the other families at the zoo and became acutely aware of how difficult life is for Woody – and why it is that he is constantly frustrated and moaning. (Incidentally, he is a lot less like this when he’s not with Stewart or I).
Woody’s brain has been impeded from developing since day one. Yes, of course it has developed but slowly and with a lot more effort from him and from us. Right from the newborn days, he was the unsettled baby at baby group, the one who wouldn’t do the activity in sensory class, the one who wouldn’t sit still for a story at Book Bug. He was very rarely content if required to focus and now I have a better understanding as to why that was. Even when small, he was frustrated and age-appropriate activities were not appropriate for him.
Especially after this recent illness, he can’t do even the simplest of tasks with his hands or communicate his needs. And he doesn’t understand why that is.
I feel a very confusing mix of annoyance, exasperation, sympathy and guilt when we have hard days. I get so fed up of having to give up on promising days out (we only lasted about two hours at the zoo, and Woody was unhappy for most of that). I want us to spend time doing fun things as a family without all the battles and the stress. What they call “making memories”.
Yesterday really got to me. Most three year olds would be thrilled to go to the zoo, have some yummy lunch and run around looking for animals. Our experience was nothing like this and I’m not sure it ever will be. Woody’s attention span is virtually zero and combined with all the things he can’t do independently, we just can’t expect him to appreciate experiences like other kids his age.
It makes me feel sad for what he’s missing out on, and what we’re all missing. I think sometimes Stewart and I will have to split up and take Bobbie somewhere and Woody somewhere else. Not exactly family together time.
The only happy photo of yesterday (at the station, not the zoo)
We have no idea if or when Woody will move beyond this period of frustration and it’s breaking my heart to imagine that he may not get to experience things that his peers do. Why should he miss out? Why should we?
But yesterday proved to me that if we just push him, he will push back and that ends with everyone in tears.
I’m not looking for picture perfection. But I long for a bit more light and joy pushing through the shadows. That still feels like a long way away.
I haven’t written a post for almost two weeks and I’ve really missed being able to get my thoughts out in writing. These two weeks have been so overwhelming. Life is changing dramatically – almost beyond recognition. Mostly in good ways, but it’s still so much for me to adjust to.
Woody has started settling back at nursery, now in the pre-school room with his peers. It’s going better than I had hoped. The staff are being tremendously supportive and want to make sure he is eased back in so he feels safe and comfortable. Currently, he’s reluctant to use the outdoor space but he is getting more confident indoors, moving around the room, interacting with his peers, having meals with them. He has even started to take a few sips of water (with help to hold the bottle) and I have no doubt that this is because he is encouraged by watching his peers.
My little hero
He hasn’t done more than a half day at a time so far but hopefully time will build up and he will be able to attend as normal when he is ready. At home, we have a temporary nanny looking after Woody when he isn’t at nursery and she will also look after both kids (heaven help her) on a Wednesday when they’re not at nursery.
And I’m now three days into my new job. Like Woody, I’m easing back in with part time hours for the first few weeks but should be up and running full time before long. So far, the job is going well. There is so much to do and many opportunities but the first few weeks are so full of setting up and inductions so I just need to get the basics under my belt before I really get cracking. It’s very exciting though and my own expereince of having stayed at the house when Woody was ill is such a motivational driver for me.
But consider that I haven’t been anywhere for the last 18 months and my life has been small and isolated, revolving entirely around the family, house and hospital. Right now, I’m on my own, on a train to Birmingham for a big team meeting and it feels so very strange.
Every single one of these changes is a positive one for me and my family, I just didn’t expect them all to happen at once! I think it will take my brain a good few weeks to catch up. And then hopefully our life will find its new rhythm and settle down a bit. We still don’t know what the plan is for Woody reagrding his liver defect, so I can’t expect to settle too much yet, but that’s more of a watiing game now.
Life has taken so much agency from me over the last year and a half and now I can see ways to claim some of it back. Ultimately this will be good for me and my family but I need to ease in gently.
I’m still so numb. I know I should be feeling more – more sadness, anger, despair but I’ve been purely operational for so long that I don’t know how to kick start the emotional side of my brain.
I started working with a trauma therapist yesterday who has helped me in the past. She’s not at all surprised that I can’t feel anything properly and that I’m not crying very much. As she said, when you’re in fight or flight mode, you have no room for feelings. If the house was on fire, I wouldn’t be sitting and crying about it, would I? I’d be fighting that fire or running away from it.
I am still in fight or flight mode because that’s what trauma does – it leaves your brain believing that you’re still under threat when you’re not because it can’t file away the traumatic experience properly. Essentially, I need to process what has happened in order to move forward.
Having said that, today, I did have a massive cry. I mean, loads of loud tears in the privacy of my room. It’s the most I’ve cried in months and I just let it happen because I know it’s part of the process to recover – feeling is healing.
Woody has been at the children’s hospital in Birmingham this week. He had a procedure to check on the pressures of his blood going through the shunt to see if they can close it – effectively repairing the defect. Sadly, the pressures they measured are too high so a simple closure seems unlikely. If they did close it, the pressures going to the liver would be dangerously high.
Woody back on the ward after the procedure.
So we need to wait and let all the specialists talk. Woody’s case will also be discussed at the international forum in early October so I hope there are some other options for him. I cannot bear the idea that he would have to live with such high levels of toxins in his blood, it terrifies me.
I feel so strongly that this defect is trapping my boy – not letting him learn and develop as he should be. I just want him freed from it – I want him to be able to thrive and to connect with everyone and everything around him. This defect is holding him back so much, I want to uncover his full wonderful self and watch him reach his potential. I hope there’s something they can do for him.
I’ve been working hard with several health professionals to get Woody back to nursery and there is consensus that he is ready to return but it will need to be a phased and gradual return. The nursery have been so supportive but ultimately, they need to make sure he is safe, well and happy when he is there. I really hope he enjoys being back there, with his friends around him. I think he’ll learn a lot from being amongst his peers.
And me? Well, today, I finished working for Marie Curie, a job I had for seven years. I’ve just taken up a role (again, as a Community Fundraiser) for Ronald McDonald House Charities. I’ll be covering fundraising in Scotland but based in the Edinburgh house, where we had family accommodation while Woody was in hospital. Obviously, it’s a cause that’s very close to my heart and in a way, I feel it’s meant to be, but I am quite daunted. I haven’t worked for about 18 months now, it’s going to be a big change. I am also worried that I’m a bit too fragile for this sort of change. But it’s also a chance to get a bit of me back. I’ve been buried under pregnancy, newborn baby, COVID, Woody’s health, etc, etc. At every step, more of me has either fallen away or been restricted. I’m hoping this new role will give me some identity, some new motivation and a sense of satisfaction that I so desperately need.
I don’t respond very well to uncertainty but I’m going to have to find a way to manage it over the next few weeks, until the dust settles. Until Woody is back in nursery. Until I’m in my new job. Until we have a plan for his healthcare. Until we have some sort of routine and control over our lives once more. I haven’t felt like I have had any control in my life for a very long time.
In the meantime, my goal is to work through my trauma and allow myself to feel, to process and to file away the last few awful months in a proper place. I don’t want to forget it, but I don’t want to live it forever. I’m so tired.
I harvested the seeds from my beautiful sunflower the other day and I hope to grow even more of them next year. Magnificent towers of strength to inspire me.
So, I think there will be a lot more tears and heartache over the coming weeks. A lot of emotional ups and downs but I’d rather feel these things than remain numb and distant. It’s time to feel things again.
When a pan of water starts to boil, small bubbles form at the bottom of the pan, and slowly they rise to the top, one by one. Then more and more, as the pan starts to simmer and eventually the water boils furiously under intense heat.
My emotions are just starting to form into bubbles at the bottom of the pan. A few have made their way to the surface and been exposed to the air, but I know it’s only the beginning.
Over the last few days, I have become more and more fragile and sensitive. I feel like a very fine glass vessel, likely to shatter under the slightest pressure. It’s not a case of “if” but “when” and that’s making life extremely unpredictable.
A few weeks ago, a friend from school died – a very close friend of 29 years. Yesterday it was her funeral. My heart ached that I had not been by her side during her final few weeks, that I had not provided her with the care and comfort that I should have, and shown her the love that she deserved and gave out so willingly. The funeral was a perfect remembrance of the incredible person she was but it was also a clear indication to me of how disconnected I am from my emotions. Most of these bubbles haven’t even begun forming yet, never mind, making their way to the surface.
I’m in a limbo state – the water is neither still, nor boiling. And the problem is, my emotions appear at the surface at random times. There are triggers all over the place that send me into an almost paralytic state of anxiety. My children crying, being physically “messed with”, loud noises, early mornings – they all shake me and make me wonder when exactly my glass shell is going to shatter. I’m fearful of that day.
I decided today to increase my dose of Sertraline – medication for anxiety. I’m too fragile and we have a tough few weeks coming up. In short, I need all the help I can get to try to be stable and maybe strengthen that glass shell, at least for a while.
So, if I’m up and down, present then absent, seemingly capable and then woefully inept, just bear with me. I know this is something I have to walk through, rather than skirt around, in order to recover. But I also know it won’t be easy. I have finally shed some tears but not enough… there are a lot more to come when the bubbles rise some more.
It feels like forever since I wrote here. A lot has happened.
Woody continues to amaze us with his progress. He is looking for a lot of affection from Stewart and I, and is also becoming so lovely and gentle with Robin.
As per my last post, I have been working hard to try to slow everything down – from undertaking tasks to breathing. And I do think it is helping – but I find it so hard to do. I spend a long time having to convince myself that it’s ok for me to lie down, that mowing the lawn can wait, or I can do the tidying later. I feel like I need to justify every little thing I do for myself but I’m hoping as I make self care more of a habit, this internal conflict will fade.
I spent Friday morning with a lovely lady called Anna from Wander Women. I had explained to her about my need to slow down and look inwards, and I knew that I needed someone else to be in charge of me doing this. That’s the only way to stop my internal voice chattering on about washing or nursery or Woody’s next appointment. I also find such peace in the outdoors and I so rarely get to spend any time for me outside, so this was something I was really looking forward to.
So I met Anna on Friday morning and spent time walking in silence amongst trees, leaning against a favourite tree, staring at the sky and the leaves and branches. We did some mindful breathing, I relaxed in a hammock in my own peaceful cocoon. We drank tea, we walked, we looked and listened.
We then headed to Portobello and Anna took me for a short swim in the sea. It was a beautiful sunny day and the sea was so inviting. It wasn’t nearly as cold as I expected (apparently, this is the time of year when the sea is at its warmest – I was lucky!) and I took a lot of joy in walking myself into the sea and feeling the waves roll around me. I felt at peace, strong and capable.
Anna and I talked quite a lot about how easy it is to disengage with the most natural activities and feelings – to feel the cold of the sea against your skin, to allow sand in between your toes, to feel the bark of a tree against your back. I love the outdoors and I think I’ve become quite detached from it, perhaps because of Covid but more so, because the busyness of life and parenthood has just swallowed up a lot of opportunities to be amongst nature – not for the kids, but for me.
Anyway, it felt amazing to spend a morning in this way and it has definitely proved to me that I need to spend more time on me, especially outside. When I explained what I’d been doing to Stewart in the evening and how wonderful it was, he said “You’re a bit of a hippie, aren’t you?” and it’s true, I am. I like to keep things simple, get back to nature, relax, breathe and wonder at the small things life has to offer. But I’ve drifted quite far from being this person and I need to bring some of it back.
Yesterday, as a family, we went to the beach, and while I didn’t swim in the sea, we did all go for a paddle and there was a summery magic about it for a short time – until everyone got sand everywhere and all hell broke loose.
One thing I have noticed is that my anxiety and fragility are coming to the surface. By slowing down the automatic frantic mode, these feelings can finally creep in. Perhaps that’s why I wasn’t allowing myself to slow down – because I knew if I did, I would start to feel things that are difficult. I’ve been feeling vulnerable, overwhelmed and a bit sad. And it’s a relief to feel these things, rather than the hard shell of franticness and anger that were keeping these softer emotions below the surface. I need to feel them and hopefully get beyond them, as I start to heal and feel like me again.
As for Woody, he finally has an initial assessment date in Birmingham – just a couple of weeks away. This is just the first step – for them to see if fully or partially closing his shunt is safe to do. It could cause high blood pressures going to the liver which would be exceptionally dangerous so this assessment is really important. Stewart will take Woody and I will stay at home with Robin. It simply isn’t practical to take a baby when she wouldn’t be allowed in the hospital anyway and they will need to be there for at least three days.
We know we’ll have to wait a while to find out what (if anything) happens next because the results of this assessment get presented at an international forum and they collectively decide what can or cannot happen. This defect is so rare that it does require international consultation, which is reassuring in a way but also drags the process out a bit. I just want my boy safe from any more harm. He’s been through enough.
We’re having lots of discussions with Woody’s therapists and the nursery about whether he can return to nursery and if so, which room, which hours and what additional needs he would have. It’s a daunting prospect but he really does need to be around his peers again – it’s been three months. Today at the park, he made a beeline for a group of kids and obviously wants more peer interaction.
So, we have a significant couple of weeks ahead of us, but it’s all moving in the right direction. I just need to maintain some space for me to feel as a person, not just a mum.
Woody is no longer at hospital, but he has not completely recovered. He is quite well just now but is waiting for a date to be seen in Birmingham He doesn’t need a hospital setting but isn’t quite ready for a nursery setting. I’m no longer on maternity leave but not yet back at work.
Everything feels like a temporary state and the waiting game is really getting me down. Things haven’t progressed one inch in terms of Woody’s referral to Birmingham – if anything, we’re more confused about the next steps. It seems that without me pushing and interfering, Woody would have fallen down the gap between Edinburgh and Birmingham (somewhere in the Lake District maybe??) – the doctors in Edinburgh thought Birmingham were taking the next step to set up an appointment and the doctors in Birmingham thought Edinburgh was setting up a meeting. So both were waiting for the other and, as far as I know, this remains unresolved.
I can feel my frustration and anger so close to the surface at all times. It comes across in how I behave – how I am with my husband and children, how I am behind the wheel of the car, what I dream about, how I approach a task, everything.
As well as frustration, I also find myself absolutely unable to slow down. My default setting is to rush, to stress, to clock watch and to multitask. I’m always doing ten things at once, and thinking of what the next ten things will be. I am programmed to believe that if I don’t live like this, something will be missed and that will be catastrophic. I’m essentially the opposite of mindfulness and it’s doing me no good. It’s adding to my state of anxiety and alertness. I fidget, my heart beats fast and I breathe quickly all the time. I’m not allowing myself to relax. I need to slow down.
With this in mind, i have decided to embark on a bit of a quest of selfishness. It’s not an easy or natural thing for me to do but I can feel myself pushing me from behind because I know I need it. Over the next few weeks, I have booked a massage, a session of forestbathing/meditation/sea swimming and a spa day with a friend. I have also sought out some trauma related therapy that has helped me in the past.
I find it quite difficult to set time aside just for me, especially as the last year and a half has really conditioned me against this. But I do know it will help me AND I will enjoy it. I nearly forgot that I’m allowed to organise things for enjoyment. Oops.
We now have some childcare for Woody at home which is a real blessing. It means I can get tasks done around the house (which I find very good for my soul!) and commit to proper self care, as described above. My body and brain need to understand that everything is ok, and I don’t need to run around frantically anymore.
Reorganising all the kids’ books. I actually enjoy this sort of thing.
This afternoon I went to the cinema. I came home not knowing the name of the film I’d seen and I felt pretty ambivalent about it – but the experience of being at the cinema on my own was very good for me. I sat alone in the dark with snacks and plenty of space and I let an OKish film wash over me. It made me focus on just one thing and not check the time or attempt to multi-task. All I had to do was sit there and watch the film. I could feel my brain starting to wander and panic that there was something else I was supposed to be doing, but hopefully more times like that will allow me to slow down and just be.
There were only three of us in the whole screen. Three women – all on our own. I was so tempted to ask their stories but I didn’t. I think we silently all understood our need to be left alone.
First cinema trip in a very long time.
Trauma gets trapped in your nervous system and I can feel it there every single second. I’m desperate to be able to relax again – it’s more than just knowing that everything is ok. I have to repave all my pathways that are currently coated thickly with trauma – I have to go through a lot of processing to replace it with feelings of safety, calm and peace.
It’s been a while since I posted and I don’t really know where to start. Everything has felt like a whirlwind with very little time to breathe.
Woody is continuing to progress at home – I still see tiny improvements every day which is good. He even managed to take a little drink out of a cup (a Scotrail cup, which added some brand incentive!). “That’s what the train drivers drink their juice out of!”
But the levels of frustration from Woody are really tough. He whines and screams so much and as much as it’s highly irritating, it also makes me feel really sorry for him. He can’t understand why he can’t do what he could before. All we can do is continue to encourage him.
The transition from hospital to home has been pretty appalling. There has been minimal communication between all the staff and specialisms involved and we’ve had to navigate much of what we need for ourselves. It seems that a lot of the key players involved in this transition were on annual leave when Woody was discharged but it’s baffling to me how there is no-one else to pick this work up. Seriously – never get discharged from hospital in August.
Slowly, we’re starting to piece things together and Woody will get therapy sessions at home. We’ve also organised some childcare at home for him so I can get a bit of a break and Stewart can get on with his work. The thing is, we’re paying for this care because no-one is able to advise us about what we should be entitled to. What happens to families who can’t pay for this care? It feels like we’re the first people in this position (which is clearly not the case) and it’s all a bit confusing and very frustrating.
On the bright side, we were able to celebrate Robin’s 1st birthday together as a family. I was determined not to lose out on yet another important family moment and it was a lovely day.
Birthday girl
The sibling bond between Woody and Robin is growing and that is gorgeous to watch. Woody can be a bit heavy handed because his coordination is currently compromised but we can see him trying to be gentle and affectionate (much more gentle than he is with me or Stewart) and Robin simply adores him. I can’t wait to see that relationship continue to blossom.
Zollinger time at the station
And other things have been going on. Very sad things, very significant things – nothing I can go into just now. The waters continue to be very rocky but I feel like I can just about see dry land in the distance – which might just offer some calm, quiet, uneventful time for me and my family. Somewhere we can just lie in the sun. We long for it, for some old fashioned simple times, the chance to appreciate the small things. I know it is coming.
When We Wake Up 