Our first weekend home, we hit a series of milestones. Sam’s Mum has been with us this first week to help ease us in, and she’s been amazing. Small things, just being helpful and making sure we’re fed and clean and have everything we need. I love watching her love on Kai – medical people aside, she’s the person beside us to have spent the most time with Kai and he responds so well with her.

When we had to say goodbye, we felt a bit uncertain about how things were going to go. Sam and I managed – we knew we would – but it wasn’t smooth sailing. In saying that, this weekend was the first time in forever that it was just us three. Just our little family, and oh. I can’t even begin to explain how amazing that was. No medical people checking in, just time for us three. It was shakey, but so so freeing, and so so needed. I revelled in the joy that was the just-us time. I wonder if this is what it’s like for other new families all the time?

Kai didn’t make it easy for us though. There was a lot of vomit. So so so much vomit. And he pulled his NG tube out. I love seeing his cheeks free of tubes, and I love his determination to yank it out but the necessity and putting it back in is heartbreaking.

I’m glad Sam had the training, because it was on him to put the NG tube back in. We called a friend of ours who lives around the corner just to watch, just in case. She’s a paediatrician, and spent some time in Africa developing an infant help program (very familiar with ng tubes). And with a swaddled squawking baby Sam inserted the NG tube like a pro. It was a bit nerve wracking for me, but I’m glad Sam was able to step up for Kai. 

While Kai was squawking – we noticed his first tooth come through. I was unprepared for that little toothy peg, but there it was. Small little baby tooth, right there in his mouth. It blows my mind, because I forget that he’s growing. I feel like we only just managed to get home, that we’ve only just got our feet under us before Kai is changing it up again. 

Still. Loving being home. Loving being here with him. Fingers crossed we’re here for the long haul, hey. 

I can’t even begin to tell you guys about the outpouring of love we get every day. With every post or update there are emails, facebook messages, whatsapp messages, comments and texts. So so so much love. We’re so grateful, we really are, that there are so many people in our corner. So many people thinking about us, and following our story.

But sometimes, some of the messages, while good intentioned,  aren’t as helpful as one might think.

I read a thing today, an article by Tim J Lawerence about how things don’t happen for a reason.

It’s a good article. I’ve struggled with the words ‘everything happens for a reason’. People say it all the time, but I’m not a fan. That Kai having a life of pain and hardship ‘had to happen’ for something better to occur? For some kind of improvement to happen? For us to raise money so a cure can be found? So we could discover what kind people we are or friends that we have?

Tim says it better in his post than I could:

Kai’s disorder can’t be fixed. I have hope in NKH research, which is why I bang on about fundraising and how if you really want to help us, fundraise for NKH. But right now, the dreams we had for Kai, the experience of raising a typical baby, the imaginary life we thought we were going to get, we can’t fix them. We grieve them. We grieve Kai’s future, and the pain he’s in, and the future we thought we were going to have.

Which is also why the phrase ‘I can’t imagine’ isn’t helpful for us. Because we can’t imagine living this life either. Because when someone says it, it’s impossible not to silently add ‘and I’m glad it’s not happening to us’ on the end of it.

Here is what is helpful for us to hear:

“We have donated. We are organising a fundraiser. We are raising money for NKH. We are doing something.”

I know this is a difficult one. I know it means work and effort and it’s harder than sending an email telling us you’re thinking of us. But this is the single greatest thing that can have meaning for us, this is one that is most important – the doing that says we believe a future is possible, and we’re helping you get there.

Research is so significant for us, because it is the sole ray of hope we have for Kai’s future. So many of our doctors and consultants are doom and gloom, who say that because we can’t treat the underlying disorder, we should be concerned with keeping Kai comfortable (silent addage: and wait for him to pass on). We hear this at every visit, every doctors appointment they reference his death and how hopeless treating anything would be.  What keeps us going is the hope. Hope that a treatment will be found through research. Raising money for that research, that is significant for us. As one of the other NKH mums says, in regards to research, hope is on the horizon.

It’s also helpful to hear: “You can do this. We hear it’s hard, we hear that you are struggling and we hear that times are difficult. But you’ve got this. You can do this, you can face the scary hard unknown, and you don’t need to do this alone. We are here, and here is an actionable thing we will do with you.”

That last bit? The actionable thing? Better than ‘if you need anything, just ask.’ Or even “just letting you know we’re thinking of you.”  The actionable thing that would be most helpful would be if you had ten minutes, half an hour, an hour to google some NKH stuff for me.

About what seizures are and what supplements can help him recover (Taurine? Tyrosine? Omega 3? Alpha lipoic acid?). About how a type of medication works. About how to teach a kid that can’t swallow how to swallow. What a keto diet is and can you do it while breastfeeding? Is the keto diet good for glycine? Is it better or worse than the low glycine diet for NKH? When should we introduce solids? How do we do solids with no swallow? When we can get a g-tube and what kind of solids can we do with that? What physio/OT things should we be doing? What benefits can we claim? What research programmes should we be a part of? Should we be getting a tumble form? Is there a grant we can apply for for things like bath equipment, extra physio or osteo sessions? When do we start worrying about scoliosis? What things should we be worrying about that we don’t know yet?

My list is exhaustive and goes on and on and on.

Or the actionable thing could be something from the help list. Or it could be you just showing up. “I’m coming to visit next week so we can gossip and you can experience some normality. What day is good?”

I don’t mean to complain, or ask for anything. No one owes us anything, and we’re so so so grateful for the love, and the immense waves of support. Just, please no more ‘everything happens for a reason’ or ‘I can’t imagine’s. Also, if people could stop using the word ‘retard’ as an insult, that would be good too.

Since we’ve been home we haven’t really left the flat. Not really. Small walks around the park, trips to the tiny corner supermarket.

Mostly we’ve hunkered in, part of it was trying to find our routine and a sense of normality. Trying to reclaim a sense of us after two months in hospital and hospice.

Part of it is fear. I’m very very aware of what it’s like to be outside the safety of the hospice. The looks at Kai’s NG tube and the look away, with side eyes after (just look for goodness sake. Acknowledge him and all his tubey glory. Look and smile like you would any other baby with ridiculously chubby cheeks).

There are a kajillion Mums and babies out during the day. Mostly I smile and my gaze kind of washes over them, I don’t look too closely. I don’t want to compare my baby with theirs, I don’t want to investigate how my little guy is doing developmentally. I know he’s behind. I know he’s not holding up his head or putting his fingers in his mouth, but what he is doing is more than enough. I’m so attuned to Kai as he is, I’m scared to know what typical development looks like.

It’s the fear, I know. We’ve spent so long dealing with the intellectual side of Kai’s disorder, and getting on with everything that we haven’t really dealt with the emotional side. To be honest, we went into hospice on end of life care, so that we managed to make it home again was joyous enough. I didn’t know this was a thing I needed to deal with. Not until small typically developing babies were everywhere.

In the end it happened at the pub. Our very first pub lunch with Kai and Sam’s folks. Friends of ours from NCT stopped to say hey, and how pleased they were to see us out of hospice. I was so so glad to see them, but was completely unprepared for how my emotions dropped out when I greeted their gorgeous little girl. She’s beautiful, hey. The most beautiful amazing little child you ever did see.

The difference developmentally between her and Kai was like night and day. She was born a week before Kai and oh my days. She’s so present and alert. Able to focus and hold a gaze, to recognise a face and smile in response, so social. Her movements smooth, and arms crossing her midline in delight.

I smiled and held it together, because grief is a private thing and I try not to process in public. Besides, despite the emotional turmoil that I was experiencing knowing just how developmentally delayed my guy is, she truly was beautiful and amazing. I was so pleased for our NCT friends (and I say that genuinely). They seemed well, and happy.

We said our goodbyes, and it wasn’t until Kai needed a nappy change that I cried it out in the privacy of the bathroom.

Every day I grieve the alternative to NKH. Everyday  I grieve what it might have been like, the future Kai might have had, the future our family might have had. I love Kai and Sam more than anything, and it’s hard to let go of the what ifs. The alternate reality without NKH.

I often remind myself that one what if was that Kai could have died and we’re so lucky to have him with us. But still, I would be remiss if I didn’t acknowledge the extreme sadness I have that we don’t walk the typical path. I think this is something all special needs parents go through, right? This is the still longing for Italy, when you’re bang smack in the middle of Holland. I mean, Holland is nice and all but it’s not Italy. No offence, Holland.

Sigh. I do my best to acknowledge the craziness of this whole situation, and then we move forward. Nappy, feed, meds. Another day down. We’ll get through.

Some days I’m okay. On some days I feel like I have things under control – Kai’s clean and in a dry nappy, the washing is happening and the sterilising is done and Kai’s feeds and meds are happening when they need to. I’ve showered and eaten and brushed my teeth, and the flat looks somewhat normal. On those days, I feel capable. More often are the days I feel like I’m barely holding it together with sellotape. On those days if Kai is fed, had his meds and his nappy is not too stinky, I’ll hold fort until Sam (thankfully!) gets home. I feel like I’m juggling all the things, and just barely making it work.

It’s so easy to miss things, to drop one of the balls and mess up. Like I did with Kai’s phenobarb dose.

We give Kai’s medication through the tube in syringes, so everything is measured out in mls. Because everything is at different strengths, the scripts are written in mgs, and we work out the mls from the strength. As an example, Kai takes Sodium Benzoate. The script says 500mg/kg/day which we split into four. Kai’s working weight is 6.88kg, so the total for the day is 3440mg, which split into four is 860mg per dose. At a med strength of 500mg/5ml that works out to 8.6ml per dose, and that’s what we draw up in the syringe and give to Kai.

Fine for Sodium Benzoate,  but there is a lot of working out and thinking and rechecking that happens. And Kai’s on 9 different medications each day. So it’s not a small undertaking every time we get a dose change or a new stash from the pharmacy.

My fuck up happened with phenobarb. Phenobarbitone is an anti-epileptic. We’ve been trying to wean it since before we left hospice. It’s horrid, it makes Kai vomit and it’s just, blurgh. We’re trying to increase zonisamide (another anti epileptic) as we wean phenobarb. Phenobarb takes forever to come out of your system, and it takes forever to load up. (Note: forever = 3/4 days).

We’d been home not even a week and I was freaking out. After a particularly unsettled day – when I was checking my calculations I thought I was meant to be giving Kai 7ml, but had been drawing up only 2.1ml – that’s an extreme wean. What happens on an extreme wean? Seizures and vomiting – tick and tick. Poor Kai. I rang our hospice symptom team all in a panic, we went through all the doses and decided on a part way (3ml) doses to help ease the drop.

Here’s the thing though, seizures and vomiting can be caused by a trillion things.

So, while we were in hospice, the strength of the phenobarb was 15mg/5ml. Once home, we had a new bottle with a strength of 50mg/5ml. And for a hot moment, I’d mixed them. Two days after freaking out I sat down with the bottles and redid all the calculations. The bottle said 50mg. The 2.1ml dose was the correct one all along.

I felt like such a wally. Horrified that I could have made such a mistake that effects Kai’s care and well being so drastically. The guilt at my best not being good enough, the fear of hurting Kai and the anger at myself for messing up took a few days to dissipate. I know Kai’s med schedule the best. I know him the best. I still can’t believe I fucked it up, but there you go.

After talking to our symptom care nurse, we reduced the dose to a lower 2.4ml. She came and did a visit (and when she did, she looked at the bottle to make sure I’d worked it out correctly) and we restarted the weaning schedule.

The enormity of my responsibility for Kai feels overwhelming sometimes. Honestly, sometimes I wonder what it would be like to have a ‘typical’ baby. Walk in the park by comparison. But then I think again, about people I know and just how some of them would be completely rubbish at being special needs parents (not you, FYI. I don’t socialise those people anymore so probably not you) and I go back to ‘thank fuck he came to us’ – even despite my small mess ups, and despite bad days being held together with sellotape, we’ve got this. We’re capable. His best shot is with us. And then I feel much better.

So they say that bumblebee’s aren’t designed to fly, that their bodies are too heavy for their little wings – wings that aren’t meant to enable flight according to the rules of aerodynamics. And yet, they fly. They don’t know they’re not meant to fly, they just keep on keeping on.

Because of this, the NKH community has adopted the bumble bee as one of their own, a little reminder to keep on keeping on. Every NKH parent is told their babies aren’t meant to live, and yet they do. I talked before about how Kai could go either way: Kai doesn’t know his brain is broken, he doesn’t know that he’s got a little glycine problem messing about with his brain development. He doesn’t know that his disorder is terminal. 

Today one of our NKH kids passed away. A beautiful little four year old who deserves to be remembered. He deserved more time, more life. He deserved so much more than NKH allowed him.

This beautiful little guy is the first NKH kid to pass since Kai was born, and I won’t lie, I’m devastated. I didn’t know him personally. I don’t know his parents. I can’t even imagine their grief.

But I do know it could easily have been Kai, and one day I’m sure it will be. I’m so angry – I feel like the research is SO CLOSE. I feel like we just need to hold out, protect his brain as much as we can. That hope is on the horizon. 

When an NKH kids passes, one of the phrases we say use is ‘Fly high.’  It’s all so heartbreaking, and today I’m loving on Kai a bit more than usual.

And just like that, we’re home. We haven’t  been home since before Christmas. Sam put away the tree on one visit earlier in the year,  but we still have all these unopened gifts sitting in the lounge.

It felt weird to leave the hospice, we said our gbyes quickly, and when we were finally out of the building, we packed up the car so quick! As it’s as if we were afraid we were going to be called back.

Being at home… it feels so good and so odd. We don’t have a routine at home yet, and all the added pressures of things like cooking and shopping and remembering to take the rubbish down have me a bit off balance.

Still, I’ll take it – sleeping in a proper bed again is so so amazing. Wearing pjs all day and not worrying about what your hair looks like. The sense of privacy, no nurses sticking their heads in to see how we are! All the things we have! I’d forgotten how much stuff we just have. How much stuff Kai has (he’s outgrown almost all the clothes we have for him!)

It’s amazing how much we take for granted, but I’m truly grateful that after a month in hospital, a week in intensive care and another month in hospice on end of life care, Kai basically said fuck it and got well enough to come home. I love him.

One of the worries about being home is what happens when Kai pulls out the tube. We won’t have nurses in our living room, so we can’t just pad down the hall and have someone put another back in.

They asked if I’d want to learn how to put it in, and the truth is: no. No I don’t. When I have to hold Kai’s head still, and he’s screaming and there are a kajillion hands over his face putting tubes down his face I want to cry with him. I hate it, I positively absolutely loathe that this is a necessity.

Put in perspective, it’s not the worst tube. It’s not a cannula into a vein, or a vent to help him breathe. It’s a small little one, and by far not the worst tube.

That doesn’t mean I don’t hate it, because I do. I hate that it messes up his face, and that we need to mitten his hands to keep it in. I hate that when he screams you can see it running down the back of his throat. I hate that Kai clearly doesn’t like it, and wants it gone.

So when we’re putting a new tube in, I feel all the things. And I’m crooning platitudes and trying to comfort my child as I forcibly restrain his head and just… it’s rubbish.

Once we’re home we will have community nurses available to us during daylight hours, who can come out and put a tube down if we need.

At night? At night Sam stepped up and said he’d learn. To be fair though, he stuck a tube down his own nose at the prompting of a nurse the other day, so yeah.

He’s spent some time hanging out with Adam. Adam is the creepy child mannequin where you can learn all the things (NG, trachie, g-tube button among a dozen other things. Poor creepy Adam has it rough).

Still, Sam has been signed off by two nurses, and has been given the thumbs up to put an NG tube in for Kai if need be.

Honestly, I was so blissfully unaware of what special needs parents learn to do in The Before. I guess this is just one thing of many that we’ll learn to take care of.

We’re gearing up to go home. I’ve taken on the meds and bulk of the care. Kai sleeps with us now, instead of under the watchful eye of the nurses, which is nice. I feel a bit like I’m getting my baby ‘back’. The nurses pop their heads in to see if we’re fine, and if we are they leave us to it. It’s pretty refreshing, actually, to be the main carer for Kai, like I’m meant to be.

In saying that, it’s not a walk in the park and I’m grateful the nurses are close by if we need them. Kai’s horribly difficult to aspirate. Horribly horribl difficult. It’s frustrating for everyone, Kai especially. I hate it, trying to pull up something from his belly to make sure the ng is still in the right place. If he’s sleeping and we can’t get one, we reposition him or do mouth care, often waking him. He is not a fan of the NG either. He’s always trying to pull it out. The nurses say he’ll ‘get used to it’ but I suspect he’ll get used to it in the same way you would if you had a thorn in your ankle, and you didn’t know it wasn’t meant to hurt.

We have to mitten his hands to keep him from pulling the tube out if we’re not hovering over him. It’s so frustrating, and I worry we’re impeding his development, I’m pretty sure he’s meant to exploring things with his mouth, and would if he knew he could reach his mouth with his hands. He’s already showing signs of shoving his gloved fist into his mouth. 

I’m also anxious to get the referrals sorted. We’re waiting to see a gastric surgeon for a g-tube, so we won’t have put meds down his nose (instead we can put them directly into his belly). And we’re waiting to see a speech and language therapist about his suck. And a dietician. It’s taking forever to sort and is so frustrating. While I’m grateful for the NHS, it’s so slow moving.

Kai’s also having a hard time keeping meds down, especially the phenobarbitone and sodium benzoate, medication used to keep his seizures at bay and the glycine in his blood down. You know, just the important ones. We do a big song and dance around giving them. They must be diluted. They must be given on a full stomach. They must be given slowly (0.1ml/ten seconds. SB is 8.4ml, so takes a good quarter of an hour). Once in, we don’t move Kai, we don’t touch him, we love him with our voices. We make sure his nappy is fresh before we start so we don’t need to do it later. We stagger the meds too, some at the beginning, some mid feed, some at the end, just in case it s a volume issue. Sometimes it works, sometimes he vomits no matter what we do.

This whole medication tube business is rough. We do it, because there is no choice in the matter – Kai needs it. His brain needs it. So we do it, but the now is rough, and we’re not even home yet.

Still, worth it. For every single day we get with him. Worth it.