Yesterday was incredibly stressful. Every health professional under the sun wanted to see us. The dietitian, physio, OT, speech and language, neurology consultant, as well as doctors needing blood samples from Stewart and I for genetic screening and a long conversation with the clinical director for paediatrics who is taking our concerns very seriously about what has happened to Woody.

On top of that, Robin did not cope at nursery. She couldn’t be comforted and we had to pick her up at midday. It must be so hard for her after 10 months of care from almost no-one but me and to suddenly be in a new environment with lots of other children. It’s a huge amount to adjust to (for me as well as her).

However, I have dropped her at nursery again this morning. Obviously there were tears but I put some familiar items in her bag to help her, along with a CD with some of her favourite nursery rhymes on it. Hope it helps a bit.

And now I’m sitting in Costa having a much needed cup of tea before going to the hospital. My mummy heart strings are pulling me back to just go and get her from nursery but that won’t do either of us any good in the long run. I’ve forced myself take an hour for me in between tears at the nursery door and hospital time. In amongst all the needs of everyone else, I’m trying to remember my own.

I’ve spent a lot of the last year and half thinking about what life has thrown my way and, on so many occasions, snatched very important moments that can’t ever be replicated. Forgive me if I get a bit self-pitiful for a while. I think I need to acknowledge these recurring losses, accept them and move forward.

The following examples are some episodes where I feel significant life moments have been lost forever…

• Being unable to conceive naturally
• Woody’s heart defect diagnosis – always hanging over us during pregnancy
• Woody being in the neonatal unit after birth – missing out on the normal experience of bringing a baby home
• Health concerns for Woody both before and after his heart surgery at six months old – my maternity leave was full of medical appointments and medication for Woody. I was drowning in anxiety.
• My mental health has never fully recovered. It has stolen a lot of joy that comes with being a parent.
• COVID meant that I went through most of my second pregnancy in lockdown. I missed people seeing my bump grow and all the excitement and fuss that goes with it.
• I had huge mental health struggles during the second pregnancy (related to Woody rather than the pregnancy) so I didn’t enjoy it at all.
• I had to attend scans and midwife appointments alone.
• I was alone with the baby for so much of my second (and final) maternity leave. It felt very isolating and exhausting.
• Woody had a nasty accident at nursery on my 40th birthday so I didn’t get to celebrate.
• Robin starting nursery became a necessity rather than a special milestone.
• I organised the end of my maternity leave to have a precious few weeks to myself as I knew I needed time to recover and heal. This can’t happen now, as Woody will need to be cared for.

I did warn you that this would be a bit of a pity party – sorry about that. But these are real examples of things that really matter to me and, if given the choice, would have been moments of happiness, excitement or joy. But that was taken from me, over and over again.

And sometimes I wonder if I’ll allow myself to look forward to anything or even expect a smooth-ish journey ever again. I can’t remember life being even vaguely uncomplicated. Don’t get me wrong, I know children turn your world upside down but I didn’t expect it to this degree. I can take the rough with the smooth. I just need more smooth.

So, what do I do with these losses? Acknowledge them for what they are and that I can’t recapture them. Allow myself to be sad about that.

But what I hope more than anything is that I will find a way to experience joy again and appreciate “normal life” whenever that decides to kick in. A bit like everyone felt after their first post-lockdown pint, perhaps being deprived of something seemingly small makes us all the more grateful for it when we get it back.

And then, I hope to make new family memories. Beautiful moments that will fill the void that the losses created. That’s the goal.

One of our greatest concerns for Woody right now is his vision. He hasn’t appeared to be able to see since he became seriously unwell almost three weeks ago. Obviously the senses can be affected when your brain sustains some sort of damage and the neurologist explained to me that sight is the sense that uses most of the brain, so it’s quite common for it to be affected.

Sight isn’t just about what you see, it’s about how you interpret what you see. Shapes, light and movement only make sense because we become familiar with the backdrop – our world around us. Woody’s brain may not be allowing him to see, or it may not be allowing him to access that backdrop to make sense of what his eyes can actually register.

Either way, it’s a huge concern and every day, we’re checking if he responds to lights or colourful books. At times, I think he can see things but then I wonder if I’m just seeing it because I so desperately want to.

That aside, Woody has done tremendously well today. He is physically stronger and his emotions seem a little more like his own. With Stewart’s support, he put his feet down to stand and took his own weight.

We used his chair to get him out to the playroom and the sensory room. And he got his cannula out of his arm, so that’s one less thing to irritate him.

It’s a daunting week ahead – Stewart is returning to work (at least for partial hours), Robin starts nursery properly, four full days a week. Woody will have an MRI scan again. I just feel really nervous about what the week will bring.

Until I had Robin, I’d forgotten how much you miss getting a good night’s sleep when you have a baby. And then the sleep deprivation is compounded by Woody becoming unwell and needing a long hospital stay. Sitting around in hospital is ridiculously exhausting, it saps your energy.

I’d somehow been getting by on very little sleep and a lot of anxious energy for the last three weeks but as of last night, I felt that I had hit a wall of exhaustion. I was so tired, I could hardly hold a thought in my head. I used hand soap to wash my face before bed last night and didn’t even realise until after I’d done it.

And Robin has a cold so was up loads in the night and when I finally brought her into bed with me, she did a huge poo and when I changed her, she weed on my bed.

Safe to say, it was not the night of good quality sleep that I needed. But Stewart had it even worse. Woody has been moved to the neurology ward. I’m so pleased he’s out of ICU but I thought he’d get a cubicle on the ward but he’s actually in a room with four bays. It’s cramped and noisy and Stewart didn’t really get any sleep by his side overnight.

We were both wrecks today but with a lot of help from family and friends, powered through the day. We got Woody into his OT chair and took him to the playroom on the ward which was good. He can’t do much in terms of moving his arms to play yet but we did a lot of music and sound so he could hear what we did. His sight hasn’t yet returned but praying that it does soon.

One thing is for sure – he is getting physically stronger every day. He keeps trying to engage his core to sit up and he can hold his head a lot better now.

And tonight he said “yeah” which is really his first proper word other than “mama”. The start of meaningful verbal communication which is amazing.

Through the fog and heaviness of sleep deprivation, we did have a better day and saw some progress. Just crossing my fingers that we all sleep better tonight. I’ve realised quite how much more bleak everything looks when I am in need of good sleep.

I just wish we were all together.

From the moment you have a baby, everyone talks about milestones in their growth or development. Their birth weight, weight gain, ability to fix and follow with their eyes, fine motor skills, gross motor skills, speech, walking, etc.

The entire journey is plotted out based on average data and every child is measured on that data.

In no way do I want to discredit what paediatricians and health visitors do, but when you have a child like Woody, milestones are an absolute kick in the teeth. His health has been complex from the moment of conception, yet these universal development markers are still used to see what Woody is or isn’t achieving.

And it DOES feel like a measure of achievement – can he do this? Can he do that? “No, no, no.” Or as the written questionnaires put it “not yet, not yet, not yet”.

And as a parent (especially with my first born), it has made me feel like a failure from day one. Even without the official milestones, every single day, I would see more evidence that my child was developing and learning more slowly than his peers. And of course, I started to wonder what I was doing wrong. Am I parenting wrong? Am I neglectful? Have I missed something that I’m meant to be doing? Am I being judged?

It’s clearly not his fault, so it must be mine.

One day, I remember the health visitor coming to the house. She didn’t say a word to Woody, sat on the sofa, got her paperwork out and said to me “he’s not walking yet. I’ll need to make a referral to the community paediatrician.” What she couldn’t see was how far Woody had come, he was crawling and pulling himself up. Yes, he was a year and a half but this was huge for him, and for me.

But there was no recognition of this progress, only of what he wasn’t yet doing. I walked into the kitchen and quietly cried at the kitchen sink.

I felt like yet again, I’d failed. Even though I could see how far Woody had come and how hard I had worked to support him. Still, we’re failing.

We don’t know why it’s taken longer for Woody to learn to walk, talk, etc and we’ll probably never know. He’s had open heart surgery, lots of ICU time, as well as many other health challenges. But these milestones are robbing me of the opportunity to celebrate when Woody does learn something new. They only focus on what he’s not doing and it’s heartbreaking.

My mental health has been pretty fragile from the moment Woody entered the world. But along with his dad, I have worked tirelessly to care for him and allow him to learn, grow and play. There is nothing we wouldn’t do for him.

Since having a second baby, it has become very clear that I didn’t in fact do anything wrong or miss something that has impeded Woody’s learning. I did everything right, because I’m doing it again and Robin is learning and developing well (by “well”, I mean, aligning to her milestones, of course).

Like all children, Woody will learn and he will do things in his own time. And we WILL celebrate what he can do. I just wish the whole milestone concept was dealt with a little more carefully, I think it would help with issues of maternal mental health. For children, who have encountered challenges early in life, they will always be classed as failing against this markers and that feels horribly unfair for both the children and their parents.

I did a lot of thinking and re-thinking overnight about some of the discussions we had with the ICU doctor yesterday. And I found myself with a lot of new questions to ask.

The consultant probably didn’t know what he’d done to deserve the interrogation I gave him this morning but if I don’t ask what I need to ask, I’ll always be confused and bewildered.

A lot of my questions were around what affects what when it comes to Woody. After all, he has a lot of different things going on with his health and there seems to be some reluctance from the doctors to consider any link between them.

I even came equipped with this little diagram to ask if Woody really is this unfortunate – that he has all of these conditions but they are not related.

As always, the questions are huge and complex and so are the possible answers. But I feel quite strongly that Woody isn’t just unlucky and there may be some link between all/some of these things, alongside significant developmental delay.

We really need a chance to talk to the neurology team as we haven’t had any input from them for a long time. We do know they want to do another MRI of his brain to see if there has been any change.

Overall, Woody is more well. He’s moving more and making more noises and did some good physio today to encourage his strength and movement. Hopefully he’ll be able to get out of ICU and onto a ward soon.

His overall plan is still being discussed with various teams in Edinburgh and in Birmingham but it looks likely that the Birmingham team will want to look at his heart and shunt to establish how they interact and what should be done and when.

As the consultant said “What do we fix first?”

A very good question.

I’ve started to really enjoy gardening. I know pretty much nothing about plants but I like sticking stuff in the ground and watching it grow.

Thanks to various people, I had a little bit of time to plant some flowers today, some that I’d bought but some that I’d been growing from seed and was anxious to get in the ground before they got too big.

I’ve talked quite a lot to my counsellor about why I find gardening so therapeutic. One of the things I found myself saying was that I like to put some effort in and then watch and wait for something beautiful to bloom. I find it very satisfying and it brings me joy.

You could say it’s the same with raising children. You care for them, nurture them, feed them and watch them bloom.

But here’s the bit that I struggle with.

Stewart and I give our children everything, we always have. And yet, with Woody, while we have watched him bloom, everything has been a struggle, a hurdle, a mountain. At every turn, we’ve had to scrape together our resources to get him to a milestone that shouldn’t be so difficult. (I’ll talk more about the problem with milestones in another post).

I’ve often looked around and thought “why are we having to work so much harder to get our boy to where he needs to be?”. I don’t have the answer to that, I’m not sure anyone does. But now that I have a second child, it’s very obvious to me that this is the case.

In the garden, I know if I provide a plant or a bulb or a seed with the right pot, compost, feed, light and water, I can make it grow. And I like how that feels.

My nurturing role as a mum is a lot more complicated.

The last few years have opened my whole world up. It used to be so small, so simple. And now it’s complicated and frightening and unpredictable. It’s full of appointments and medical jargon and worry.

I confess, my life up until the last five years was very protected. I had never spent a night in hospital before I gave birth (my mum will correct me if I’m wrong). I have been blessed with good health and my parents have done an amazing job of making my life safe, secure and happy.

Needing to go through IVF to conceive was a bit of a blip but I was cared for extremely well through this process and was successful on first attempt with both my children. I still felt blessed.

In many ways, I know I’m still blessed with what I have: family, friends, a loving husband, a job, a home, gorgeous children.

But I find myself feeling pretty self pitiful a lot of the time. There has been so much trauma, so many obstacles. I honestly can’t quite believe it when I think about it all. But I don’t want to wallow in self pity, it’s not helpful and it’s not how I usually am.

Looking at this differently, these years have been brutal but they have taught me so much that I didn’t understand before. I had no idea how desperate a parent feels when their child is unwell and they can’t fix them. I didn’t know how helpless that would feel and how you’d rip out your own heart to save theirs.

I didn’t know how stripped of energy you become when you juggle pregnancy or a small baby, together with an unwell toddler, with a very heavy dose of anxiety and lingering PTSD thrown in.

I didn’t know how the pain would claw at my relationship with my husband and try to tear it to shreds. We cling together and push each other away at multiple times every day. There is simply no time to sit together and stitch up the torn bits at the moment.

In short, my life has changed beyond recognition and I have too. I hope that ultimately, I become a better person but until the dust settles, I do not know.

As I sit in reception at ICU waiting to get in to see my boy this morning, I raise my plastic cup of cooled water to all the parents and carers out there giving every ounce of love, energy and devotion to their unwell children. I wish it on nobody but until you live it, I’m not sure you can really know.

Of course this isn’t the Father’s Day we had planned. Last year, we had a sunny picnic in the meadows. Woody ran around in the sun and Robin snuggled inside my womb.

It’s a world away from that here. But… Woody is seeming a bit more himself and certainly looks a bit better. As long as every day shows us some progress, then I’m happy. Just like every day, the sunflower keeps growing.

I want to take a moment to say – Stewart has been through it the last few years. He has been a tower of strength and reassurance during some very very dark times. Inside, he has crumbled but he has stood strong for his family.

We are so lucky to have him and even though it’s not the Father’s Day we could have ever imagined, at least Stewart got a cuddle with his favourite wee boy.

And three years ago…

Woody’s sister Robin (or Bobbie) is 10 months old. Over the last few weeks, she has spent hours going back and forth to the hospital or being looked after by friends and family. She isn’t allowed into ICU so hasn’t seen her brother in two and a half weeks – a long time for a baby.

She adores Woody and Woody adores her (although she drives him crazy too). I hate that they’re missing out on sibling time just now but I do know that they’ll reconnect beautifully when the time is right.

Thankfully Bobbie is a very sociable, confident little girl, in-spite of being born during covid. I made the difficult decision to start settling her at nursery earlier than planned so I can focus my attention on Woody. It was painful to even be at nursery and see Woody’s friends playing in his room – where he should be. I couldn’t hold the tears back at the unfairness of it all.

And yet again, life has snatched a moment from us. The moment where we drop our daughter off at nursery for the first time. You know – all of us together. Woody knowing that his sister is joining him at nursery. Me and Stewart taking family photos and marking the special milestone.

In reality, Woody was ill and comatose, Stewart was in the hospital and I was alone and distraught. A time I’d rather forget than treasure.

This morning didn’t start well. Woody was restless and agitated overnight. He’s finding it virtually impossible to sleep even though he is exhausted.

But partway through the night, he would drift off and then wake with a start and seem very scared and shaky. And that’s how he was when I arrived this morning. Needing desperately to sleep but as soon as he did, he jolted awake and was howling with fear/pain/distress. It was awful to watch.

We waited so long for doctors to see him (there was an emergency in another room) and I just had to sit there and comfort him as best as I could. I felt pretty useless though and so stressed.

Then, literally as the doctors came in, he changed. I was chatting to him and he seemed to respond a bit to what I was saying. Mostly I was talking about his favourite programmes and his favourite snacks and he started to listen and respond with smiles and enthusiastic noises. I think he actually said “mama” at one point too. My heart pretty much burst.

I still don’t think he can see much but I love that he’s responding to things – things that would normally excite him. It’s really encouraging. But as is always the case with Woody, I can’t get too excited just yet.