Sunday, October 24, 2010

coming to terms with the past

I have done some editing of this post because after posting it and then sleeping on it I felt uncomfortable with the original words I had used.

Owen is meant to have just turned 18 months old, -he was due the 27th of April arrived the 21st of March 2009). Its been a wild 19 and a half months. I am not sure whether to write that I have found peace with the 47th chromosome but I am in a good place at the moment. But until very recently I was still struggling with it.

For me the grieving process has been interuptted and complicated by Owens health (jaundice, cardiac failure, sleep apnea, cardiac surgery, hypothyroidism, and respiratory viruses, hearing loss (still WAITING for him to be well enough to have ear tubes in) and his newest health issue asthma. Each time he got sick it was like we hit another speed hump on the road of acceptance. We went on to survival mode and would do what we had to, to get him better. But then he would get well again and instead of feeling joy I often just felt exhausted and deflated and sad about Down Syndrome. Because, I would think we wouldn't be going through any of this if it wasn't for that extra chromosome. (which I know is not really true).

One of my biggest issues is the fact that we are THAT family, you know that family with the kid with Down Syndrome - at playgroup, at school, at soccer, at music. And I wondered why did that bother me so much but in a moment of clarity I have realised that this is about me.

As a child I grew up in a small town (just 300 people) our family was hardly "normal" with my Dad having a mental illness that he self medicated and everyone in town knew it and I think was afraid of him. I grew up with a great deal of shame, powerlessness and anger, we where That Family.

As soon as I could, at just turned 17, I left that town and started my own life and it was going to be "normal".

And it was .......until Down Syndrome and now I feel right back where I started out, now I feel like we are That Family again, ironic isn't it. So anyway realising this deep connection with my past and my childhood desire just be normal has been such a release for me, I realise it has what has kept me "in grief", I acknowledge that wanting to be "normal" will probably be a the thorn in my side, my weak point. But in that moment of realisation and since then, I have felt lighter, felt much more at peace with Owen having Down Syndrome, because it just is and yes it is who we are, we are - That Family - the one that loves, adores their kid with Down Syndrome.

So, back to grieving and acceptance, now I realise that this process is determined by the experiences of my past, my family relationships and my childs health and possibly a thousand other variables no wonder it is taking some time.

Wednesday, October 20, 2010

Three little pigs

Meal times are never just about eating !

Sunday, October 17, 2010

Beach Photos

So good to be back home, we had a great week at the beach.


We all just loved the sunshine and seeing trees in full leaf again!


We took Owen and Cy's little car down the beach it was a big hit with both of them.


These perfect little spheres of sand are made by crabs at low tide and cover the beach.



Owen LOVES to eat sand I had to distract him with other things to play with the whole time we were on the beach or else he was shovelling it in by the fistful.


We went to the butterfly house - it was very humid and very warm inside, Owen looks ready to pass out.


We stopped at the markets in Bellingen and met John (who runs the curry stall there) he recognized Owen (well his 47th chromosome actually) right away and quickly ran to get his son Anun who is 9 and who also has that something extra. It was fantastic to have that instant connection again ! Owen wasn't sure about the beard ! you can check out John and his family in this documentary taken for ABC last year.



When in Coffs Harbour everyone gets their photo taken at the Big Banana - Australia is littered with Big Icons they are pretty wild but everyone always get their photo taken beside them its just what you do.

We had a great time the weather was kind to us and I feel ready to take on this (very busy term), and Christmas is looming.......eek

Saturday, October 9, 2010

beach break

So we are off to the beach 7 days of sand and surf - can't say sunshine because it is forecast to rain nearly the whole time we are there! I can't wait to see each of the boys reactions to the beach. We live about 2.5 hours from the coast but havent been since last November, I love that we have a whole week to enjoy it "see you " when we get back

Tuesday, October 5, 2010

Car Track

We have this little ride on push car at home and I sat Owen on it but he couldn't get it to go, then remembering our crawling track and how the slope helped Owen to learn to crawl I took the little car out to our (overgrown) front path which has a gentle slope down to our frontdoor, and look what happened.


At the beginning did you see him sign "GO" ? (we use AUSLAN - Australian sign language) it is his new sign. Sorry the video goes a bit longer than it needed to and Cyrus pushing the car back over Owens toes ! - I don't know how to edit videos on our camera).