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Lyla Mae

Lyla Mae Rich 17thDecember 2010 – 2nd August 2017

In August 2017 the NKH family lost a dear dear girl to this shit of a condition.Now every one of these children, young or old, makes me sad when they die and each one of them takes the air from my lungs for that moment when I see the Facebook post or get the e mail to say they are gone. But some hit me harder than others. Some I can tell myself were much younger or older than Alice, they were much more affected, I knew the parents but we didn’t talk regularly or even the child wasn’t a girl. Anything to remove the shock and grief to that of the parents who are bereaved but not see it as anything that could possibly be like my situation or anything we will face. But this weeks loss really is a personal one to my world and my journey so far with NKH. And when I say “journey” I mean “fucking awful road trip that I never asked to go and the weather is shit and the scenery is bleak”.

Way back at the cold hard start of all this I found a lady in the UK who had an NKH baby just six months older than Alice. The Mum was called Michaela and her baby girl was Lyla. We spoke via e mail (holy shit I wasn’t alone!) and she put me onto the support groups on Facebook and gave me some contacts. Now at the time I was living in New Zealand and Lyla was in the UK but that didn’t matter, we have social media and the internet nowadays so Lyla was the girl to follow from across the oceans. Alice came just after Lyla so if we could follow her path and if Lyla stayed alive then surely, we would be fine. Odd way to think I know but all thinking post NKH diagnosis is odd to a “Normal” so I don’t even bother trying to explain the rationale behind half of my thoughts anymore.

As the months passed it became apparent that Alice was less affected than Lyla, less affected than most in fact, but still regardless of our girls differences, Lyla was the rabbit and we were the greyhound.

Over the next 6 years Lyla has done amazing things, grown so beautiful, started school and from what I’m told developed a massive personality, but also she has had so many serious health issues and some of those resulting in some pretty scary near misses. Her condition has taken her to the edge on more than one occasion and yet each time this Wonder Women, Warrior Girl, this Teflon coated chubby wonder with the shiniest hair has pulled it back and me and so many others have been able to exhale until the next time. We don’t just breath relief for Lyla but of course for her family. After all, there is no good time for a child to die but “now” is always the worst time.

On the 2ndAugust it was Lylas “now”.

At this point I just want to swear a lot, a real lot. Tourettes type random swear words that just come one after another. I know this is not my grief and not my story and Lylas family may even be at peace with the time she chose to go. I know it wasn’t sudden and unexpected and that the family were able to provide palliative care at home and spend so much time just being in Lylas presence, so for them it may not be anything like what I imagine I would/will feel when Alice goes, but Im angry, fucking angry. I hate NKH and what it does, I hate that these beautiful kids go through so much shit and pain and suffering. I hate what it does to the parents regardless of whether their child lives or dies, whether they lose them at 9 days or 9 years. It brings so much divorce, so many families members just walk away or are so fucking ignorant that you have no choice but to cut them out your lives, parents become alcoholics, half of us are on medications ourselves just to deal with it, friends fall away (although to be fair, not the good ones), we become angry and bitter and we get judged by everyone (trust me when I say even the silent non spoken judgement does not go unnoticed) and normal situations are often too much for us to even be around. I could go on and on but I may just save that for another post.

I don’t know if Im angry that Lyla has gone or that she had NKH in the first place. If Im honest I think it’s the fact that she had this damn condition. If shes gone, Im just gonna trust that’s what she wanted and it was her time and she was all good with the fact that her work here was done. Im gonna trust that she was happy and content and but tired and wanted to rest.

So to Lylas family, Im so so sorry for your loss but Im so happy that she dive bombed into your lives and into everyone elses too. Please know that she sent ripples around the world, her mere existence gave me immense hope when I needed it like a drowning person needs a life raft.

You have lost your beautiful courageous girl. Me and Alice have lost our rabbit.

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