Dev and Miri

I found this draft from November 2014, and it’s still accurate eight months later. Miriam is 18 months old now, and walks and runs everywhere. Devin is coming up on 6, and doing quite well at school (though he still doesn’t talk). They love each other and have recently started playing quite well together, now that Miri is slightly less susceptible to putting absolutely everything in her mouth.

Let me tell you about Miriam. She is adorable. Unbelievably cute. She attracts gushing and cooing like a magnet of adulation, every time we leave the house. She is also unbelievably squirmy – she used to give me a good battering from inside, and just as I predicted, she’s been no different on the outside. Just always moving, not necessarily in a mobile way, but in a… slippery eel kind of way. She finally started crawling after the 10 month mark, but just like Devin at the same age, she crawls predominantly to get to things that she can pull herself up on and use as walking aids. (Often, our hands.) She would also happily crawl straight off the edges of things without a moment’s pause if we didn’t stop her.
She’s rough. My goodness, is she rough. Pinching, biting, scratching, pulling, whacking… Not maliciously, of course, but she doesn’t seem to have a soft mode. She’s either ‘off’ or ‘tough’.
Nappy changes are so difficult, she absolutely hates them. I’m sure most every parent can identify. I can’t even distract her these days, because even as she’s laughing at me blowing raspberries in her tummy, she’s trying to flip over and crawl away. And when she’s stopped, she yells. Not crying or shrieking; yelling. It’s a stark contrast to her very cute and lilting speaking voice. She cries when she’s hurt, or wakes up disoriented in bed, or when Daddy tells her sternly to stay away from something. She shrieks when she’s playing (hospital corridors are very good for playing with high-pitched echoes…) She yells when she’s grumpy.
She’s watched us use hand sanitiser so much that she only has to see the bottle to start rubbing her hands together. She waves goodbye, and sometimes will hold a hand out in front of her as we’re walking, palm up, in a ‘what’s going on?’ kind of gesture. She LOVES sparkling water, loves drinking with straws, loves trying whatever anyone is eating.
Her favourite person is Devin.

Let me tell you about Devin. Oh, man. Firstly, his hair attracts as much attention as Miriam does. I’ve got my own little travelling circus when I’m out with the two of them.
All that attention is kind of hard, because he doesn’t talk to anyone except me, Jene, Miriam, my mum and my two sisters. That’s it. Everyone else would be lucky to get a nod or a wave. I’m sure it has everything to do with his experiences over the last 18-ish months, and it does weigh on my mind. I have to speak for him, knowing he’s not going to (many long, awkward silences in the past), all the while feeling like I’m not actually helping him by doing that.
He can be clever, but he’s easily frustrated, and easily defeated. He stubbornly refuses to learn things. But, he will often try them when he’s alone. He’s yet to take that initiative with numbers and letters…
He loves Lego, and frequently surprises me with what he builds. He is, much to my disdain, rather obsessed with ‘gun shooters’ – if something isn’t a gun, chances are, he’ll make it one. Mind you, these ‘shooters’ usually fire jelly, or, I don’t know, sharks. And he also loves playing doctors, and superheroes, so..,
His most favourite show is probably SpongeBob. He loves a lot of shows and movies, though the one I find most unexpected is The Jetsons Movie, from 1990.
His favourite song is Outkast’s Hey Ya. His favourite food is pork ribs – he could probably eat more than Jene.
Most mornings, the first thing he asks me is, “does Grandma have work today?” He goes to her house on weekends, and gets the true beloved grandchild treatment.
Sometimes, he’s quite sensitive. Sometimes, he must feel like all he ever hears is “not right now, Devin” “I’m busy at the moment” “maybe later” “please find something to do yourself”… Or just outright, “no.”
Sometimes I go to bed feeling so guilty that I didn’t take the time for him that day. Sometimes I just want to hold him and tell him I’m so sorry that he knows more about hospital than he does about playing with other kids, and I’m so sorry his baby sister arrived and divided our attention at a time when he just wanted us.
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It’s been a while, I’m finding it difficult to write, but things are going relatively smoothly. I started this draft almost six months ago, so here’s my timid return…

Last year Devin was given the opportunity to make a wish, thanks to Starlight Children’s Foundation. It was actually a difficult concept to explain to him, and a lot of the popular wishes (holidays, computers, meeting favourite celebrities) kind of went over the top of his 4-year-old head.  Something he’d repeated regularly, though, from pretty much the time he could speak in sentences, was that he wanted a dog.
We’d been talking about it before he got sick, and despite our situation being considerably different, we eventually (about six months after Dev was approved for a wish) decided we were prepared to take on a puppy, if Devin so… wished.
He did, and after a few weeks of communication with our coordinator, Nicola, Devin was presented with a lovely little Cocker Spaniel puppy. Jene had thought of some name options, and Devin chose Remy. Our local Petbarn also donated a credit account to their store, as did Duncan McGinness Veterinary, which was a lovely surprise.

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He even got his own personalised name tag.

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Now, we weren’t expecting it to be easy, but in hindsight, having a puppy and a six-month-old baby at the same time was particularly ambitious. In fact, I think a puppy is harder work than a baby for those first few weeks. There was strain. Jene had majority responsibility of Remy, I had majority responsibility of Miriam… for a little while, I thought it was a mistake. But, of course, things got easier, and Devin and Remy love each other. Miriam and Remy are a little troublemaking team, which is as cute as it is frustrating.

The writing gears are rusty and I’m tired, so I will leave you here. If you haven’t already, please have a look at Starlight, they’re a fantastic organisation that does so many wonderful things for sick kids.

Two months in…

I’ve been wanting to write a long (loooong) post, but I’m just so exhausted by the end of the day. Growing a baby is tiring enough in normal circumstances… Here are some short updates.

  • Devin is doing generally well. The leukaemia he has is the most common, and most responsive to treatment, and for that I am very thankful. I know there are parents at the hospital who wish their children have what Devin has…
  • We’ve been in Sydney for two months now, without leave. Ten days in hospital, one week in a Leukaemia Foundation unit, and six weeks and counting at Ronald McDonald House. It is… difficult in the house. I’m struggling here. But that’s for another time.
  • The treatment schedule is quite variable and they don’t tell us what each stage involves and when it will happen until we have finished the one before it. We can’t plan for anything. At the moment, we’ve been set back two weeks because Devin’s blood counts have been too low for chemotherapy. And that’s the catch-22 with the treatment – chemo destroys the cancer so the bone marrow can produce normal blood cells again, but chemo also destroys other fast-growing cells like hair and… normal blood cells. Transfusions are a fact of life for patients, and never have I ever been more grateful for the people who donate their blood. I’ve only ever donated whole blood, but will make it my mission to donate platelets and plasma when I am able to again.
  • Steroids are the most awful and useful drugs.
  • Most of the medications in the treatment are given to counteract the ill-effects of other medications, and it starts to feel absurd.
  • We’ve been getting incredible support from lots of people, especially family and friends who are organising fundraising (and doing an overwhelmingly good job at it), and my online mother’s group. I ‘met’ those ladies over four years ago, and never did I think the group would become what it has. Very, very special.
  • I’m 21 weeks pregnant now, and we know that baby is a healthy little girl! I had absolutely no preference for a daughter or another son, but I did have a feeling she was a she. We are all excited… and maybe somewhat nervous.

Obviously this is just the very tip of an emotional few months, but since I’m now typing this with one hand while prostrate in bed, I’ll have to leave it there.

Remember December

Goodness, goodness me. I’m going to forge ahead as if I hadn’t just, once again, abandoned my blog for a few weeks.
I apologise for all phone pictures – Devin broke the on/off switch on my proper camera a month ago and I haven’t had it fixed yet.

Devin was not terribly interested in Christmas – when we put up the tree, he ran away and left me to put it together myself, and then when it came to decorating it, he sat underneath like this and played with the one light-up bauble that he has been enamoured with since he was four months old.

I made this felt tree to try to make things a little more interactive and exciting, but he didn’t play with it. At all.

We’ve had gross, suffocating heat over the past month. Very little rain, few breaks in the high temperatures. Before Christmas, I’d feel smug that we had entire sports fields to ourselves while everyone was busy shopping, but we’d all be dripping with sweat after ten minutes and would end up skulking back to the cool retreat of shopping centres, anyway. I stopped to take a group shot after one of our run arounds, and…

I don’t handle heat well. With temperatures in the high 30s and low 40s (Celsius), I’ve given up on the exercise routine I was doing so well with. I feel sick a lot, and my hair is driving. me. nuts. I have to put it up to get it off my neck, but wearing even the loosest ponytail gives me a pounding headache. I can’t afford a haircut at the moment, and I’m starting to contemplate just chopping it all off myself. I prefer my hair longer, but this is painful. (And that’s not purposeful ombre or balayage colouring – that’s just the remains of when my hair was red. Sigh.)

Speaking of hair, Jene’s is super long now. Longer than mine at its longest, I believe. We shaved it all off around January 2009, and it hasn’t seen a pair of scissors since.

I entered a competition on the lmnop magazine blog to win a nanoblock pack… and promptly forgot about it. A couple of weeks later, I received this package in the mail. Being close to Christmas, I wondered how I had accidentally ordered all these nanoblocks (and how on Earth I had afforded it). It took me about five minutes to realise where they’d come from. We gave the drum kit one to a local Christmas toy drive, along with some other things.

Devin finished his third term of music class, and held his record of never cracking a smile at anyone, ever.

I found a rather embarrassed Banana-sans-Pyjamas in the ravaged toy section of Big W.

Our Christmas gift to Devin was a doll (this one – it smells like vanilla and sweet things), a pram and some handmade doll nappies and blanket (made by a friend of Georgia of Documenting Delight). I asked Devin what he wanted to name the doll, he asked me for suggestions, and latched on to the very first name out of my mouth – Patrick. I regret it a little now, because although it was very nearly Devin’s middle name, I’ve come to associate it with Spongebob Squarepants. But, Patrick it is. I also made up the three little felt guys as a last minute addition.
My parents gave him a Slip n Slide and a trampoline (why yes, he is the first and only grandchild, how did you know…), both of which he was initially wary of. I had to show him how the Slip n Slide works, and then we resorted to just holding his hands and dragging him along it. The trampoline was still unassembled on Christmas Day – we showed him the picture on the box and said, “look, a trampoline!” and he responded with, “yeah, can I splash in the pond now?”

My sister gave me this sign, which is pretty much the perfect expression of how I feel about my life.

I managed to see the very last glows of sunlight on Christmas Eve.

And finally, on New Year’s Eve, I rediscovered a nursery that I’d forgotten about, and found that it had become a lovely, peaceful place to wander around, have a coffee and let Devin play.

Although Devin was not happy when Jene place him atop this stump.

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Devin is not and has never been very interested in arts and crafts, despite my continuing efforts. If he spends five minutes painting or drawing, I consider it a success. So when I say that he played with these for half an hour, you can understand my awe…

Micador Glass & Tub Silky Twistaz, will you marry me? I think I can even look past the silly spelling in your name…
Unsurprisingly, these let you draw on glass and porcelain surfaces. They are so smooooth to draw with, and it all wipes off easily with a wet cloth when you’re done. Awesome? Yes.
I dare say the main appeal of them for Devin is that he is allowed to draw on something that isn’t paper… We’ve only used them on windows so far, but I think he would also enjoy them on a mirror and in the bath. (I would!)

But the best part? He drew his first ever recognisable person with them. Check out that hair! Nice.
At $10 for a packet of five, they’d be a great ‘stocking stuffer’. I found them at our Big W, and they’re available from various online stores, too.

(I certainly wasn’t paid by anyone for this post, I just really like these markers.)

Ta-da

All right, the moment we’ve all been waiting for…

Are you ready? ‘Cause I wasn’t…

Holy MOLY.

It happened last Friday. Jene had been preparing Devin for it for a couple of weeks. I waited outside while the two boys went in – there were silent tears, until the hairdresser brought out an iPad. (Kids these days…)
When it was all done, we went, as promised, to pick a new toy. That strategy may have worked a little too well, because he’s already told us a couple of times that he needs another haircut…