(24/4/03– 12/6/03)

Discovering something of being a Dad.

I have one child, our son Tobias. We shared 7 weeks together before his body yielded to the problems that go with having an extra chromosome 18. But I am happy to count it as much more than that. He came as a wanted child, a welcome pregnancy of an older couple ensured he was much cared for well before his birth. We did not go looking for early signs of possible problems. A scan at eleven weeks showed us his heartbeat. We talked about names, be this child a boy or a girl.

The happiness of our anticipation received a rude shock from the morphology scan at 19 weeks, the day after Dad turned 50. Dr. Jenny Mitchell needed to talk with us. We thought the worst, and our thoughts were on track with what the scan showed. Physical observations from the scan were indicative of Trisomy 18. What were the chances? More tests. Some waiting for results. Finding the right people to support us. Suddenly it was important to know our child's sex. The child my wife was carrying needed to be given all the love we could find, and having a name is a door for receiving love. On hearing our child was male we called him by name: Tobias Patrick.

Our choice of a boy's name had been ready before his trisomy was apparent. The story of Tobias and the angel Raphael was one I had read to Denise. It is a story of faith, and being able to name our son was one of many acts of faith we took together as a family, for that is what we quickly discovered the three of us were.

Together we agonised over our ability to accept Tobias with his Trisomy. The three of us needed to celebrate life together, conscious as we were that if he was granted a live birth his life as our son would follow a different script. We learnt what we could about the kind of script that might be. Dr Ross Diplock opened his door to us, we looked at text books and articles on the net. Dare we hope for a live birth and a little time to love our baby Tobias?

Our prayers were answered, and Tobias came into the world showing his own special sense of humour (definitely inherited) arriving the wrong way around. There he was, pretty much an ordinary kid. Sure he was little, needed to be tube fed, and his ears, hands and feet had the characteristics of Trisomy 18. There he was, an answer to prayer, our son, ready to enjoy life with the help his Mum and me, his Dad. Yes, it had been the right thing to invest in a pram and a car seat!

Babies don't come with a user's manual. Tobias had his own script to follow, but we did not have it in advance. But it was a good one. Born early on Thursday morning he came home on Sunday morning - via church where he was baptised. His ideas about feeding imposed a 3 hourly routine on us for the seven weeks his strength allowed. Yes, a bit onerous, but I got the hang of tube feeding and we sang our own drinking song together "trickle, trickle, trickle ...›\.. down!" That hour of sharing after midnight was a precious time of male bonding.

The day Tobias had a sickie brought us down to earth. Eleven resuscitations, and he proved himself a dinkum Aussie battler. Simple medication gave him a further lease of life, and it was home with routine re-established, but now backed up with an oxygen bottle. Routine was about living, about going shopping, about meals with friends and a place for the pram in a restaurant. Grandma stayed longer than first planned. We were, and remain, a family who celebrate life.

So when Tobias at 7 weeks did not pull through his 14th resuscitation (at home) it was a big wrench. We needed time with him. We would honour him in death as in life. Our friends who shared with us as we grappled with his condition when we first learnt of it half way through the pregnancy, and who are his Godparents, gave us magnificent support that evening (they still do!). Thank you Ken & Jenny.

The mortal remans of Tobias are at rest in Perth. His memories continue to be a part of our family life. We celebrate his place with the saints and angels in the love of God. Thank you Tobias my son.

Keith Elvish, July 2003

A Lovely Baby
Gone to Rest

A lovely baby boy gone to rest.
He was just a treasure, in so many ways.

I just loved him from the first day I saw the little man.
Now he has gone away.

God has taken him to a far better place.
I know we will all miss him,
But the love he has left behind
no one can erase.

So dear little angel
Go and suffer no more.

We loved you so, no one can take your place.

God will take you in his arms
and hold your smiling face.

In honour of Tobias Patrick Elvish 24.4.2003 to 12.6.2003
© Dot Gleeson