Happy Birthday Thomas

It's Thomas' 3rd Birthday today

I would like to have a little boy at home, who just turned three right now. It is an age that I enjoy, three year old's are chatty and they have excitement for the world, they love to be busy and they have independent moments. I love that their imaginations are are on overdrive, even if that causes them to be just a little bit naughty.

I know that Thomas wouldn't have been the usual 3 year old. He had challenges, I know that. He may have just mastered the art of sitting up by now, he would have had significant developmental delay.

We may have spent most of his short 3 years in the hospital. We would have spent many thousands of dollars on medications, equipment and aids.

We would have held our breath whenever he de-saturated because of a hypertensive event and was dangerously close to death, we would have sighed with relief every time he pulled through. And we would have thanked God that he lived every single day, thanked God for one of the best Children's Hospitals in the world being almost on our doorstep, and prayed that He would get us out of there as fast as he could.

But that didn't happen. It doesn't matter how much we wanted him to live. His little body stopped working and that's just what happened. Nothing changes that.

So, we went to the Queen Victoria Market in Melbourne to "do" something on his birthday. It's a place that we went to quite often during the season of Thomas' life. There are lots of memories there. It was handy (sort of) to the hospital, we only had to get on one tram and it went from out the front of Ronald McDonald house to the west side of the market. The food stalls and delicatessens are all on the east side so it was still a bit of a walk from the tram, an easy walk if you didn't have anything to carry or if it wasn't a very hot day.

Today, on Thomas' third birthday this is what we did at the Market, we found hard rock lollies that had Happy Birthday written inside them. I managed to save 2 little pieces so I could take a photo of them.

And at 2 small cafes side by side we bought Pizza slices, Chicken Burrito and Omelet for lunch.

We bought the Omelet because it was called Omellet a Lo Thomas, and because we like omelet.

We had cake from the cake shop. We bought some Turkish delight too. Lucky we are all big people or we might have had a sugar rush tantrum brewing up by now.

We bought some little wooden toys from the stall that Thomas' other wooden toys came from, and we bought a bone carving from a Tongan man. There were buskers and even an art installation (made from vegetable boxes and chalk writing on the footpath) made by some university students to highlight sustainability. Then we came home.

It was a good day. It was good to do something different, to use Thomas' birthday as a reason to go and do something together and to speak his name.

Angie at stilllife365 posted my poem today in memory of Thomas. Thanks Angie. It would be great if you went over there and read it.

Thanks to everyone for your messages today.

Treasures from a Golden Box

There is a sparkly golden box in the corner of my bedroom. It carries inside a few small keepsakes. Never to be used again and still almost brand new, these little wooden toys with happy faces, and brightly colored rattles that make a hushed sound have a very important job. To keep my memories in place, so they don't get lost.

I like the randomness and foggyness of how this picture turned out. I made it with the scanner. These are finger puppets that we bought to amuse Thomas on his good days. There is the King and Queen and Prince and Princess and Jester. There is also some of the ladybirds and bees from a little mobile that he loved looking at. A couple of springy bungee critters and a castinet that we hushed with a piece of sticking plaster, a christmas bear that turned up on his cot one night and some quiet rattles are in my collection.

The other treasures include a copy of the poem that Dean wrote and photo that we gave to the people who came to Thomas' funeral. Also one of the nurses (Laura Taylor) took an ink footprint without us knowing and she made it into a beautiful keepsake so she could give us a secret Christmas present from Thomas.

Nurses don't get enough recognition so I will say thank-you for thinking of us Laura. It's one of my treasures now.

Wedding Anniversary

It's our wedding anniversary tomorrow

We have been married 4 years

Our first wedding anniversary was 10 days before Thomas was born. We went to a friends place for a meal but we weren't really up for celebrating. The Doctors had already found worrying signs of Thomas' condition. The scans had shown up a high S/D ratio (blood pressure) in the umbilical cord of 5, it was supposed to be around 2 or 3. Also I had a very large amount of amniotic fluid, its a condition called Polyhydramnios, we were being monitored with the fetal heart monitor every couple of days and they were trying to get Thomas to 38 weeks before delivering. We got him to 37 weeks and 5 days. I wondered (after) if the high S/D ratio was an indicator of his extreme pulmonary hypertension, but I am told that it probably wasn't. The over abundance of amniotic fluid is an indicator of his unconventional digestive arrangement, but it can indicate other things too. No one informed me about this, I did a very long internet research shift to find some information that gave me a whisper of things to come. Then I was too scared to ask.

The second year I don't even remember, except, I know we were trying to coordinate a bathroom renovation that dragged on for 12 weeks. I have thought about it and I don't have any recollection of any kind of event to mark the day. We were so sad. And the house was such a huge disaster. Everyone kept on saying to us, "you must be so happy/pleased to finally get it done", "is the bathroom great/are you enjoying picking out the fittings?", "it will be great when it's done". I felt like screaming at them, " I would rather have my son living here with me, a renovated bathroom does not fix my grief, no I don't love my new bathroom, its a big pain in the ass to not shower in your own home for 12 weeks, I hate everyone who wants to force the good side or bright side of any situation out of me" I didn't understand why people couldn't allow me to grieve, I think that they made it worse by trying to be bright and not allowing me to talk about things. My family has a history of not talking about things.

Last year was a different kind of sad with a fair bit of angry mixed in, we survived last year by prayer and a fairly big measure of stubbornness. A wedding anniversary was more of a joke than a celebration. I was very angry last year.

This year is year 4, it has been our best year yet and we are actually going to celebrate. My Husband has bought Theatre tickets, so we are going out. He has taken a day off work. And he has sourced the tickets from the internet, we are going to see Milkwood. We have the Melbourne Fringe Festival on at the moment, Milkwood is part of that festival. I better find something nice to wear, and put on some makeup.

This is a nice picture of us taken last week when we visited Marysville Vic to see how the town has recovered after the devastating Black Saturday fires. This is what 4 years of weathering devastation looks like on our faces, older with a little bit of hope for the future.