I'm sorry I haven't blogged for such a long time for all those of you who have been wondering about little Oscar. He is a big 3 year old now and full of mischief. I have been feeling disheartened about writing on the blog for various reasons. I am thinking of ways to change what I write here, to find a different approach that fits the different place we are at on this long journey but I haven't quite reached it yet.
The important thing is its about Oscar and I want to continue it as a record for him. So, today was a huge day. Hospital wait time was long and then they discovered they hadn't taken enough blood and we had to start all over again. Oscar's entire approach to Clinic has changed now he is a bigger boy (as he keeps telling me) and he likes to take control of as much of the process as possible. So, having to break it to him that he would need a second blood test today wasn't ideal, especially as it was midday and his bedtime, but he stepped up and did what had to be done as he always does (although not without telling the nurse very definately - "But you already done blood test. But, you did it. BUT, YOU DID IT ALREADY. OSCAR ALL DONE in very load screams). I just love his ability to stand up for himself.
Auden was an angel and trooped along colouring in, playing with trains and cheering Oscar up when he was sad. Not one whinge or complaint. Its a lot to ask waiting most of the day in hospital but he just knows how to help out when it matters most.
We met up with another mum in clinic who I haven't seen for a while. I am in awe of her. She has two boys 11 months apart who sit quietly eating fruit and drawing for hours without any chaos or harm being inflicted upon each other or anyone else. I have always thought they are twins but they are just 5 and just 4 years old. The most well mannered, quiet, patient little boys you could meet. When we used to see them on hospital stays they would both be sitting up in the hospital bed quietly reading books. No restlessness, no load yelling, no fighting. I always thought to myself, 'How does she do it?'. Today she appraoched me and asked how Auden has coped with Oscar's journey. I said he has struggled more than Oscar. She smiled and sighed saying she had wondered as her boys are close and the sibling has suffered a lot more adverse long term effects and she wanted to know if that was my experience too. She said she has looked all over for books of stories of other mums and asked but the hospital don't provide any support for siblings and she has found her son clinging to the one best friend at preschool and struggling with any separation even though he has had so much separation from her with his brothers treatment. She is from Japan and has no family support and just the calmest, gentlist, caring mum. We had a good chat and it helped us both to know that our sons were having such similar experiences. I told her she is an exceptional mum and her boys are just divine because she is an inspiration to me.
When we were told that Oscar had to have his bloods redone she got most upset on our behalf, which was funny because she is always so reserved and shows how she too can get overwhelmed by the frustration of the system. Usually, the mask of motherhood is so claustrophobic it disguises these feelings but its easier to feel it on behalf of another mum. We had a good laugh at the 'go with the flow' system that we feel deep gratitude for and absolute resentment all at the same time.
Then Dr Margaret tells me Oscar's bloods are very high and she is concerned. I don't have any real reaction to this because I have learned that reacting to blood results is pointless. No one ever really knows what they mean so unless they can tell me something definate I just let it roll off me like water of a ducks back. We took a urine test and we will get the results on Friday. If they come back positive we may have a stay in hospital at the weekend, which messes with the boys combined birthday celebrations, so fingers crossed its just another blood result that makes no sense (or he has a virus or any other number of other things,,).
This is why I don't update you because the updates don't mean anything concrete and I am trying to live a life without focusing on blood results and medical statistics. This journey of medical testing won't finish until Oscar is 9 years old so we have to just get on with it. If we place Oscar's medical status at the focus of everything we miss out on the good stuff.
I am moving on to focusing on different ways to help the people who helped me. I have been learning to run and can now run 5km. I want to start doing some fundraising for Cure Our Kids when I can and working towards the City to Surf next year. I am working now and life is busy with things that include Oscar's health (of course) but are not exclusively centred around it.
We got home today at 2.30pm and collapsed on the lounge together and all three of us slept until 5pm (although it could better be described as 'loosing time'). We awoke wondering where we were, how it got so late and feeling generally out of sorts and confused. Its amazing how exhausting it is in clinic - physically and emotionally - and how so much of what you are taking in is subliminal. There was one child in particular today who was in a diabolical state and it doesn't impact you in any conscious way but somehow the energy of the place infuses you with the suffering and courage and patience and madness of the journey that is also such a deep part of you and your journey. Noises, smells, situations, decisions, negotiations that you don't want to have with your child - all bubbling away under the mask of coping and finding the joy of every second of connection that you have in clinic with anyone and especially with the people who are your central support team (Dr Margaret, Donna, Mary, Sunil, Erin - we love you). Phew, glad its over for another fortnight (hopefully) and glad its always there to help our little Oscar turn 3 and smile and clap and make himself heard.
Thanks for checking in on us. I hope you and all your families are doing well. Take care. x