Small joys

It is easy to see why so many relationships break up over a child with special needs. I can see how thin the line is between coping and not. And as i have said, we have it good.... lots of support from friends, a great city to live in, plenty of medical and allied health support, a generally happy baby. Yet, even for us, it is sometimes tough.  I think we need to allow ourselves and our partners to have flaws, and to sometimes be unable to cope, or to vent, or to put down tools and take a break sometimes. And to give ourselves and our partners credit for all the things we do. Maybe this will be a salutary tale, an exposition of mistakes. But hopefully not. So far, we are doing okay.

I realise that there are plenty of people in tougher places than me. Plenty whose relationships break down. Or whose children are mostly sad or angry or frustrated. Or who get treated badly in their worlds. Not much i can say to console, except that i think there is some pride and even joy from living well, from giving love to your child when its challenging, and from sharing the moments of happiness with him/her. Often this feels like small compensation, but maybe we have no choice but to allow these feelings of pride, these small joys to be enough. For all my fellow parents, I hope there will be many moments of joy for you  in the new year, and in the years ahead..

And more..

So, the spasms have come back last 2 days. Jai's grumpier than usual, though maybe this is his emerging teeth. Me and Heather are grumpier too, and not always playing nice. Grief doesn't flow like i've read in the texts. The stages are there all the time, just under the surface.. denial, anger, bargaining, depression waiting to burst forth. Acceptance may be a long time coming. Anger is one that I need to control. It is an inheritance from my Dad. I have controlled it well in the past, leashed and tied, like some animal I don't completely trust. But it takes plenty of willpower when I am mostly tired, and worried, and grieving. There's no good target for the anger; certainly not Jai. On bad days, my wife and I throw barbs at each other, testing our breaking points. But we know ourselves well enough to make some space, usually before the fireworks start. 

I've been sticking to the usual morning routine, waking up early with Jai, playing and singing to him for a while (for unclear reasons, he seems to love my off key renditions of Beatles or Doors songs). I sit him up for a while, do some tummy time, give him his morning medicine, take him for a walk in the stroller. We walk along birdy paths, different each time, hearing the cooing of pigeons or the calls of tree birds. There are never many people this early in the morning, but Jai often evokes a smile or a comment of "beautiful baby" when we see someone. Today, a shy old Italian lady peeked under the hood of the pram, and chuckled with delight at him. I know this time of babyhood, where everything appears normal and we get good wishes from strangers isn't going to last forever. I should be enjoying it. But today, i feel a weight in my chest. 

Summer, more of the same

Jai's spasms started again after a break of 3 and a half weeks. So we started vigabatrin last week. The feared side effect is irreversible loss of peripheral vision, but Prof. L tells us that this is most common in an older age group, and in those on high doses. So we're trusting him (we have little choice in reality, we cannot let Jai regress again like the first time he had spasms). So far, since the vigabatrin started, there have been no fits or spasms, and Jai's been his usual self, touch wood. 

We had a short holiday in a farmhouse on the coast for my Dad's 88th birthday, and were joined by my 16 year old son, Noah, who is much loved by my Dad, and who stays with us 8-10 weeks each year. We were worried about the long drive, but Jai did okay, and he enjoyed getting plenty of attention on the trip. I took him into the cool sea for the first time, which didn't impress him at all! But he loved being surrounded by chickens and forest birds, as did we all. 

I dreamt that i was looking at gems in a gemstore. I had three in my hands, all of which i wanted to take home. One of them was a ruby, and was cracked. I was examining this one closely, but loved it as much as the others... Not an obscure dream; I have three children.

The dream brought one of my favourite Leonard Cohen songs, Anthem, to mind:

"Ring the bells that still can ring,

Forget your perfect offering,

There is a crack, a crack in everything, 

That's how the light gets in."

The birds, they sang At the break of day Start again, I heard them say Don't dwell on what has passed away Or what is yet to be. Yeah, the wars They will be fought again The holy dove She will be caught again Bought and sold and bought again The dove is never free.