Some hiccups

This year has flown by, a mostly good year, a very busy one. My 17 year old son is now living with us and going to school down the road; our 5 year old is beyond excited having him here. We've settled into our new house, and had some people over for the inaugural feasting and drinking of wine. Heather's Mum came to stay with us for 4 months, sleeping with, playing with and hanging out with Jai, giving us a great break. She went home last week, so we now have a nanny a few days a week to try to fill the sizeable hole that she's left, and help us out when we're both at work. 

 

Jai's had a few more seizures in September, after being seizure free for the first 9 months of the year. Hopefully it's just him growing and us getting his medication dose right. And his occasional insomnia. It's time for us to get a bit more routine into his evenings, and hopefully he'll get used to some sleep time cues. 

The restart of seizures is playing on our minds. I feel a sadness and an echo of the difficult times last year, and a helplessness. We've upped Jai's medicine and trying to be as normal as possible, keeping smiling and playing with Jai, looking after the other kids, doing our work.. 

He seems otherwise his normal self though. Crawling faster, getting better at balancing, getting up onto his knees to reach across at things. He's loving getting out to the parks, seeing other kids and playing with the pine bark. Getting more used to the sounds and sights of the neigbourhood. 

The rain is steadily falling tonight, as it has done for some months, the wettest of winters stretching its fingers into spring. We've dug through the soil, myself and Uma, planted flower seeds and strawberries in the front, fertilised the citrus at the back. I'm enjoying the sweet sound of rain and imagining its energy spreading through our small square of land. 

 

 

 

Winter

May 3. Winter is starting in Melbourne, cold dark mornings give way to windy cloudy days, or sunny but still cool. The city gradually slows and fills with a determined torpor; meanwhile the hospital emergency gets predictably busier, greeting all of us workers with a symphony of breath and cough each day. 

Jai still wakes at his usual time, and now me and my wife cling to sleep and hope the other parent has more energy. Then roll out into darkness, pluck him from the cot, rewarded by the usual smiles and laughs. After some time at home, it's out into the streets, searching for coffee and for the first rays to warm us up. 

Jai's got a lot better at using both of his hands, we're concentrating on making him use the weak side. Getting his hips up off the ground too, but not pushing his chest up enough, and not coordinating it all well enough to crawl. Our physiotherapist, Jill, gave us some new exercises to try on a roller, which he seems to like, but tires out quickly. We're taking him swimming every week now, hoping it helps him to keep getting stronger. Uma's doing good, and seeing friends at school and outside. Making Melbourne her place. She is very gradually becoming less demanding of our attention, and allowing us to look after Jai without feeling so left out. Resilience building for 4 year olds: friends, playgrounds, garden, swimming, and dance classes.

We have decided to have a regular evening off to be a couple once a month. Jump on the tram to the city, to meet some friends or share a meal. Rejuvenate. Soon Heather's Mum will join us here for 3 months and lend a hand.

 

July 25. Winter proper now, cold windy and raining most days, like the Melbourne of my childhood. We've been busy moving house, any spare time spent organising things for the new house. Getting grumpy and exhausted. Heather's Mum has been great, waking up with Jai and doing a large part of the looking after of him. Uma's been taking my attention when I'm at home, but i try to grab some time with Jai as much as i can. He misses the outside world when it's too cold and windy, so i try to take him out each day and let him look around. Instant calm for when he gets cabin fever. He can sit up for a long time now, maybe 20 mins at a time. And today, he crawled! - commando style maybe, but definite crawling to get to the toy he wanted. Very proud of himself, as he should be! We're excited too!

Autumn

All going pretty well. Still no fits this year (touch wood). Jai's trying hard to crawl, and rolling furiously all over the living room. He manages to somehow get himself to most things which catch his eye. A long way from sitting up, but enjoying being held up more and more. No problems with eating which is a big big relief. And even babbling occasionally nowadays. 

All good news in other words... Like other bubs, I suppose, he takes a big step once in a while, then little change for a few weeks. At the moment , he's in one of those stages of consolidation. We need to be patient! 

Most of the time we try to stick to 2 or 3 routines.. wake up early, play on the floor for a while before a feed, sit Jai up, walk with him around the yard maybe, then a pram walk seeing the neighbourhood or the creek or some birdy parks, as Jai drifts off to sleep.. Then whoever's left behind looks after Uma, gets her ready for school, which unfortunately needs us to fire up the car (but this will change next year, when school will be closer). Then the rest of the day's routine starts a'swinging. Work, chores, house stuff, organising for our move. Weekends are precious breaks.

I find that weeks drift by, and i talk on the phone or email less and less. Life is good, enough social times for sure, but i often don't find the mental energy to start an email or to make contact with all the people i should. I'm Gen X slacker thru and thru, I'm afraid. A mediocre facebooker! But I'll reply to all my emails in time. Meanwhile, this blog will have to do. 

 

Acceptance

Well, i know it's a fluid state, but right at the moment, or for the past few weeks, I feel I've reached a state of acceptance, something which seemed a long way away just a few months ago. As I've alluded to, this is a time of life when Jai is mostly happy, and mostly not frustrated, so believe me, I'm not taking this state for granted. I'm sure there will be lots of times I'll rail at the universe and wish he had a fairer slice of the pie. But right now is pretty good, and  if i look back at the end of the year, it seemed like i would never get here, even for a short time.

I look forward to spending time with Jai, I miss him when he's away, i feel hope for his future. I love the times i've already spent with him. And don't dwell too much on "what if's". So.... things have changed, and quickly. So, I'm thankful. 

Jai will be part of our family, and a part to treasure. . We will make space for him, be proud of his strengths and accept his flaws. And let him grow and change and colour our family in his own ways.

Urban problems

Ear worms and other january irritations:

Having to listen to commercial radio, thanks to my wife, who might be getting me back for recent fights by torturing me with the likes of MMM and Kiss Fm. On one particularly painful day, she planted a Taylor Swift ear worm, which hung around for several hours next day! I'm hoping the upcoming Jesus and Mary Chain gig will make her see sense. 

Working 10 days out of 11 before finally having the weekend off. And then falling asleep on the couch cos I'm so exhausted. 

Having to visit my parents in the burbs, and then having to visit the shopping mall and make do with bland coffee and food court lunch. 

Having to trim my facial hair for work despite living a stones throw from Northcote, the beardiest suburb in Melbourne, and being surrounded by men with impressive bushranger hair. 

(What i mean by all this) is life has settled down into a new normality, with the normal hassles of life. I'm enjoying Jai and Uma most of the time, taking breaks when i need to (especially from Uma, who's my fiery and emotional girl, hard work, man!), and getting excited about new plans... i've ordered a mirrorless 4:3 camera with a pancake lens, and looking forward to taking some shots of the 'hood on dawn walks with Jai. It's important to find balance - work and play, family and friends and self - for myself, but for Jai and Uma too. Happy parents = happy family. At least i hope so. 

 

 

No news

Things steadying down with Jai finally. I'm almost scared to write "2 weeks without fits" on this blog, cos i know what that usually leads to. Lucky I'm not superstitious, touch wood.. His last seizure was after a 40 degree day on NYE. We made sure we had a portable aircon in his room for the next hot one! 

I'm working a lot at the moment. Jai smiles and laughs with recognition when i come home after early shifts, ready for some bouncing and bad singing. A very nice greeting to wash away the work day. He's got some new favourite things... fluffy toys, balloons, nose rubs (Maori style greetings).

In the meantime, he's started rolling from side to side and sometimes all the way over. (He's very proud of himself when he does this, looking at me with delight on his face). He's started shuffling around the cot too.  Slowly getting stronger. He enjoys spending time by himself on the playmat now, and working out how to get to toys just out of reach. Hopefully all this playing is improving his trunk strength. The holiday break is over, so early intervention is starting next week. Our case worker is a music therapist, so it's great that Jai loves songs so much. Then a physiotherapist will visit too.