Ellly

Edit: 

I didn’t realise today would be the day, so this is a terribly timed post. Oh Charlie. Fly high little guy, you’ve touched millions of hearts worldwide, you were well loved. You will be so missed.

x

——–

I’ve mostly kept my tongue about Charlie and his parents (apart from that one misguided and horrific sun piece, but even then I was throwing my support their way).

I’ve held my tongue because none of us can know what it’s like for them. Not even us, with Kai having spent so many weeks in intensive care, and in hospice on end of life care. With his seizure coma and on a ventilator being told he may die. Not even with our own horrid genetic and terminal disorder. We’ve lived through the horrific. Just in case you wondered what that time for us looked like…

We lived through the horrific. We continue to live through the horrific. And the worst is still to come. 

And yet, our story is not their story. Our lives are not theirs, and our decisions aren’t theirs either.

So many people have condemned Charlie Gard’s parents for doing what they do. I’ve seen comments about how they should always be at his bedside, or should have fought harder at court, or should have let Charlie go earlier. I’ve seen and heard comments that attack their characters, that talk about dignity and death in the same sentence. That talk about quality of life like they know what that means for Charlie. I’ve seen comments about the hospital, and their staff. I’ve seen a lot of judgemental and unnecessarily hateful comments.

Shame. Shame on anyone who thinks even for a second they know what Charlie’s parents should have done. Who thinks even for a second that this family deserve any kind of judgement, any kind of passing comment.

They’re just parents, hey. They’re just doing the best they can for their child they love.

Their best may be different to your best, but that’s okay.

Worse, the least empathetic comments I have seen have come from special needs parents. Parents who have spent time in intensive care. Who have faced end of life and hospice and saying goodbye.

Truth is, how we face those horrors is our own personal nightmare. None of us manage in the same way. None of us can truly know what it’s like for Charlie’s family. When we were in intensive care facing everyday was filled with shock and emotion and grief and hope. Nothing was straightforward, everything was hectic and crazy and we spent a lot of time trying to balance what we hoped with what we knew and what we were being told. I can’t for a second imagine what it’s been like for that small family. Add in the media and the court case and the judgy public, it has to have been 11 months of an insane emotional rollercoaster.

I also feel like we were given a sliver of their life. Just a tiny peek.

Enough to know that compassion and sympathy should be the first port of call, enough to recognise this family is on a very different path to the one everyone else is on. We don’t need to stand on our little soap boxes and point down at them, they’re already living with their decisions. They’re already in a world of grief and hardship.

Let’s not kick them when they’re down, hey. We should be better than that.

Recently, my Dad and Jane came to the UK for a wedding, and they bookended their time with us. I can’t even begin to explain how delighted I was that Dad was here. 

When he visited in January, we were in intensive care. Kai was in a seizure coma having a rough time of it. He hadn’t opened his eyes, he hadn’t cried, he was floppy like a rag doll.It was a tough time. We even had a ‘just in case’ baptism in our little intensive care bay. 

That visit was a world away from this one, where Kai was awake and vocal and a very very very different baby. And to see the two of them together? To watch my Dad tickle Kai’s feet and to hear Kai sqwak in response? Heartwarming. To watch Dad play with Kai, have cuddles and laugh with him and generally just delighting in Kai?

I loved it. Loved loved loved it.

We did a fantastic Kew Gardens visit. We hung out in our local park on the heatwave days London’s been having recently. We just spent time together. Nothing fancy, just passing the hours in the most simple, wonderful of ways.

All this perfect time with them highlighted how very far away New Zealand is. I hate that distance, that time with my NZ family is always measured in days. Not weeks or months or years, just a handful of days here and there.

If I was so excited they were here, I loathed saying goodbye. There were tears from all of us. It was tough. Goodbyes are always tough, and there’s always the question of will this be the last time? Or will we be granted more time, with all of us together?

While I’m grateful we had the chance to spend some time together, I’m so sad at that again there is so much distance. It’s rough. Even worse is that because we can’t travel with Kai, not the two long haul flights with a layover (if anything happened on the way, or in the stop over we would be completely and utterly stuck) we’ll never get to New Zealand with Kai. Not at this point. 

And I’m heartbroken at that idea. That Kai will never see where he came from. That he’ll never swim at the beaches I grew up on, or walk the streets of my hometown. He’ll never go to a school that teaches Maori, and never understand the kiwi colloquialisms. Heartbroken. Completely heartbroken.

Oh New Zealand, why are you so far away?

If someone could event a teleporter and set the price at affordable, that would be brilliant. 

Today when we woke, I found out three small little NKH bees have passed on. I’m heartbroken, I really am. NKH is taking one of our own every few months. MONTHS, hey. This is not okay, this is absolute rubbish. No one wants to say gbye to their babies. It’s so horrifically unfair. 

The shit thing is that I feel like we’re fighting against something as immovable as the tide with Kai – that one day we’ll have to say our own g’bye and just… I can’t even begin to talk about how heavy that makes my heart. How furious. I want to rage, I want to howl because it’s so horrifically horrifically unfair.  And then I think that there are three families right now who are hurting. Three lives that NKH has taken, three beautiful little children that should have grown up. That should have learnt to ride bikes and enjoyed the never ending summers and graduated and travelled and loved and LIVED. 

But they didn’t. Because NKH is horrific.

I hate NKH. I hate it with such a passion. 

I hate even more that the cure is being held back by something as stupid as money. That our children could be given futures if they’d been born to millionaires. That gene therapy could be an honest to goodness thing we could do to save our kids if there was enough funding for it. 

How horrifically unfair.

Today I’m hugging Kai a little closer. The truth is that the more kids pass on, the more anxious I get. The more I google the term ‘NKH life expectancy’, the more I look into the why’s and how’s (it looks like it’s almost always respiratory, womp). The more I feel like we’re waiting for our turn at that horrific day.

I’m fiercely hopeful an NKH cure will be found soon (c’mon Prof Nick Greene, were rooting for you). I throw myself more and more into fundraising, what else I can do, what other event could we throw?

Please donate, hey. Help us fund a cure. Children just like Kai are dying. They’re dying regularly. This is not an abstract someone else’s baby, hey. This is our children. With faces and names. And it’s heartbreaking.

Fly high Evelyn, Bradley & Boone. You three were well loved, and will missed fiercely by your NKH family xx

I’m exhausted. I’ve been up since 5am when I did the morning feed, and despite it going on 1am now, I’m finding it difficult to go to bed.

We have a night nurse. And she is lovely. A well experienced lady who sings wheels on the bus out of tune, and strokes Kai’s forehead and fusses over his blankets, making sure he is comfortable and settled. She is lovely, and completely competent. Over qualified, even. With the credentials at this hospital, in that intensive care, part of this other specialist community team. An a mum. She’s over over qualified.

And yet, I can’t help but hover, finding another job or something a rather to keep me in the same room with them. This is meant to be our down time – time for me and Sam to do things like shower and sleep and hang out – and I have no idea what it is that has my heart all in my throat at the thought of leaving Kai with his nurse. Trusting him with someone who is not Sam or me. 

It’s tough. I both want the space (and the sleep!) and I want to be there with Kai. I essentially want my cake and I want to eat it too. 

It’s hard, trusting Kai to other people. I know that I know Kai best. Because of that, his care is best when he’s with me. Trusting Kai to someone not Sam or I feels like leaving Kai to second best. 

I’m trying to trust that second best is still very very good. That second best will allow me some down time to be rested, to be better for Kai tomorrow. But I feel the all the guilt. This is only our second night with her, Kai doesn’t know her yet. And other Mums don’t get night nurses. Neuro typical babies don’t need night nurses.  

I remind myself that Kai is not neuro typical and other mums don’t have to do half the things I do with the meds and tubes and the seizures. But still, guilt. Eventually exhaustion wins out and I drag myself off to bed, and I’m all sad and sorry for myself. Accepting that I can’t do everything all the time is hard. Accepting help is hard.

Conveniently I’m also exhausted, so sleeping is not an issue and despite my brain running a million times an hour with all the sad and the guilt and missing Kai despite him being in the next room… I sleep. Exhaustion – that’s exactly why we have a night nurse. 

I’m sure it’ll get easier…. right? Our night nurse is back next week. I’ll try to be in bed a bit earlier than 1am. Baby steps.