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Its coming to an end.....

Updated: Jul 11, 2020

When I had my kids I expected to carry each of them on my hip for a few years. I assumed that even after they could walk I'd still pick them up now and again if they were hurt or sad or even to just see if I could still do it.

But what I didn't expect was that at just 3 weeks shy of her 9th Birthday, I would still carry my daughter on my hip every single day. Despite what you might think, this isn't so much because Alice needs to be carried, but probably more because I need to carry her.

There are some practical reasons for hoisting her onto my aging hips of course. Alice cant walk safely if she wakes in the night because her movement disorder goes crazy. Think of the videos you see of people with Parkinson's or Hungtington's, and how they shake and twitch violently, only for them to take their meds (or smoke a joint) and they slowly calm. Well, Alice on waking is the "before" in that video. We can also get random attacks like this for no apparent reason whatsoever. Movement Disorders are arseholes like that.

She still struggles with steps of any sort, she struggles with uneven ground, she finds it hard to walk and hold things in her hands at the same time, she can't get in and out of a car or the bath, she will slip after a shower if her feet are the tiniest bit wet and of course sometimes you just cant wait long enough for Alice to negotiate whatever obstacle it is, so in these situations, I often just pick her up.

But mainly we do it because we like it. I like it.

To give you a bit of background, I never really held Alice as a baby. Certainly not in any "normal" way. She was either seizing, projectile vomiting, screaming, had tubes up her nose, out of her stomach or IVs in her veins. She hated being held and would thrash and buck out of your arms and on the rare occasions her brain calmed sufficiently for her to be still enough to accept hugs, I was too damn scared to touch her for fear of it setting something off. Now don't get me wrong, I wasn't cold and distant with her, far from it. We always lay together on the floor, we slept next to each other always, she would love to play with my hair or have me blow raspberries on her tummy, but normal bog standard mummy/child hugging just didn't happen.

By her toddler years we were dealing with this weird phenomenon that a lot of kids like Alice experience, and that is that they have to throw their bodies backwards to slam into things. I'm told its a scensory feed back thing but I still find that an odd explanation. In short if you held Alice on your hip, you had to have one arm under her bum and the other between her shoulder blades really forcefully holding her against you. In fact I only carried out this move on rare occasions because if she did really want to throw back out my arms, even a two handed death grip wasn't enough to stop us both crashing to the floor.

By about age 3, Alice had begun to work out that you could hold on to a parent when being held and you could in fact reciprocate the hug. Until this point it was like holding a 3 year old newborn. So there was absolutely zero support or stability being instigated by Alice, her weight was 100% in your arms and she wouldn't even put her legs or arm around you. I'm not talking about holding, I mean even lay them on you, they'd sometimes just hang like a puppet with severed strings.

I can tell you first hand that the dead weight of a three year old is A LOT more than you think.

As the years passed, the tiniest of touches and squeezes began whenever she was in our carefully orchestrated two armed grip. It was so weak and gentle it literally felt like butterflies landing on your skin, but she was finally returning the hug and to this day I remember the first time I felt it. It was so gentle and delicate that it took a few times before I realised I wasn't imagining it. I had waited so fucking long for my daughter to hug me. Years, I had literally waited years for it and now I was getting the tiniest of butterfly touches when I held her.

It was about age 5 or 6 when Alice fully perfected her hugging and probably nearer 6 or 7 before she got really strong in her squeezing and initiated a full body hug. And of course not forgetting Alice was in a near constant state of meltdown and distress until age 7, so hugging simply wasn't on the agenda that often prior to this.

By this stage I still needed two hands, but this was due to the sheer weight of her and not to hold her in place. She'd now hug me like a baby Koala holding onto its mother and she'd firmly grip her legs round my waist, her arms around my neck and she'd constantly ask "peeeease carry me like a baby". So I did, a lot, and I still do. I love it and I can't get enough of it. It makes sod all difference that shes nearly 9 years old and shes up to my armpits in height or that shes 22kg in weight to my 50kg. She's still my baby and its like no amount of hugging will ever make up for what I missed.

So I carry Alice when she needs it, when shes feeling wobbly or unstable, when she can't get her legs to work as well as she'd like and when her damn Chorea is making it impossible for her to control her body. But mainly I do it because I just bloody well adore it and if I could, I would carry this girl on my hip forever. But I can't.

This realisation first started to invade my thoughts last year but now shes growing like a weed and doesn't even look like a young child anymore , its popping into my head almost daily. My back hurts to lift her, my arms cant support her for long, I have to thrust my hip so far to one side to support her that I'm looking very odd and crooked when I do it. Quite often I have to adapt things so that when I hoist her up onto my hip, I then sit on the sofa with her still glued to my side but its not the same. Soon it will be over and its not fair. I didn't get all this normal shit at the beginning and I had to wait over half a decade for it and I've maybe only had 2 years of really great perfectly executed hugs and already its nearly over.

Being denied this part of totally normal parenting, is perfectly demonstrated if I'm ever given the opportunity to hold a baby girl. In fact to all the friends whose baby daughters I've held for just that bit too long and too close and whose hair I've secretly sniffed and made endless daft comments about how "still" they are and how amazing it is that they arn't floppy, I apologize. I'm not sure I'll ever hold a baby girl without it being the weirdest feeling for me and I'm not sure how on earth I'm ever going to accept I can no longer carry my daughter.

But as with most things in my life, I now see things very differently to how I did pre Alice. There truly is always something to be grateful for and so here is the flip side to this rather pathetic Self Pity Party.

When Alice was a 12 weeks old baby at deaths door in Wellington General Hospital, there was a lady across the hall with a baby boy being treated for failure to thrive. He had several things wrong that no one cold quite put their finger on but just like me, his Mum just knew something wasn't right but she wasn't getting any answers.

As Alice lay dying and me and Greg were digesting her terminal diagnosis, the little boy called Sam was having a nasal tube fitted to help him gain weight and his Mum was apparently heartbroken hearing of the little girl dying from NKH across the hall. Her boy was sick and not thriving but he wasn't dying right? At least she wasn't like the poor woman with the baby with no hope of survival.

In the coming months myself and this lady became friends. Not because we met at the hospital but because I tracked her down a few months later. Turns out her son in fact had an aggressive and incurable brain cancer all along. Approximately 9 months later, Sam had died. Alice lived and Sam died. Life can be an absolute bitch like that.

I found out that Sams family lived very close to me and when I saw a story about them in the local papers, I reached out. At this stage I had no idea that she already knew who I was and had heard of us when we were both in the hospital.

I met this incredible woman for coffee as I was just so alone in those days and I hoped maybe if I could hug her, try to say something wise or helpful, maybe empathise in even the tiniest way, then maybe we'd both feel a bit better, and I'd have someone who understood what I was dealing with because at that time Alice still wasn't expected to make her first birthday.

As it turned out, Sams Mum fixed me in a way I really did not see coming. I wont go into what we discussed, in fact I cant even remember it specifically but the meeting had a profound way on how I started to view Alice and her apparently short expiration date.

From that day on if Alice grew physically in any way I thought of Sam. I'm not talking about physical gains and developments, but growing in size. Each time she needed new shoes, or bigger pants, or grew out of a wheelchair or walking frame, each time she stood taller or I had to bend less to kiss her head, when she went up in the size of coat hangers for her T shirts, when she graduated to a bigger kids toothbrush, to a real bed and so much more. All of these things made me think of Sam and still do. I get to see Alice grow and that tiny tiny thing is something Sams Mum never got to witness.

But because of Sam I really get to "see" Alice grow. So I'm sad and a tiny bit devastated that she wont be on my hip for much longer but the reason its coming to an end is because she grew. That's all she just grew.

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