Monday, 27 August 2012
Monday in hospital
I took Jayden to hospital early this morning for his blood counts. We arrived at outpatients, picked up the piece of paper we need to take to the other part of the hospital where you get blood taken. Sometimes they take the blood from his lines but only if they are going to do dressing changes or something else with his Broviac. This time neither was happening so we trotted off to the place you go to get blood taken ( no doubt an official name but it alludes me right now). He only had to have a pin prick on his finger, which even that is yuck for a child but he took it well and then we had to kill an hour before results got back.
We went for a walk around Subiaco and stopped briefly at a park until other children arrived and then we had to quickly vacate. It's sad that we can't leave him to socialize as he desperately wants to, but we can't take any risks. So we headed back to the hospital for the results, which came back ok. They hadn't jumped a huge amount and his platelets had plummeted but neutrophils were up and haemoglobin up slightly too, from 71 to 75 so all ok. We have to return in a couple of days for another count.
I never like to go to Hospital and hated it with a passion in the beginning. Now however I have met other mums and am always grateful to see their familiar faces when I get there. There is truly nothing more necessary in this crappy situation than to have others that truly get you with every inch of their soul. Some people say they understand, or think they get it but unless they are walking in these shoes with a child with cancer they truly can't have any idea. I know i didn't. I know that there is truly no pain like this that i have ever experienced in my life and would not wish it upon anyone.
I got talking to one of these beautiful mums today and we talked about how the simplest thing in everyday life can open up the floodgate to the very emotions we try so hard to keep at bay in order to cope. She went shopping one day and watched a man with his son, whom was about her sons age and his son was trying to decide what to have for afternoon tea. She thought to herself why isn't that her and her son. Why isn't the biggest decision for that day in her sons life about what he wants for afternoon tea. I wished I could answer that for her with an answer that would relieve her pain. I wish I knew why our sons were picked to spend the rest of their lives fighting for their lives. but I can't. I ask that very question to myself so often and there is no answer.
We are home now and right at this very moment I am sitting in our parked car with the motor running and jayden asleep in the back.
He's taken to only going to sleep in the car during the day, and who am i to argue? He can sleep wherever he wants, as long as he is happy.
Yesterday I was fortunate to have the two women who helped our family in organizing our trip to Chicago and have been huge moral support since the beginning in my home at one time. Research nut and a wonderful lady from Melbourne, Sue, who has walked my very shoes. It was truly wonderful to be amongst women who I can now consider close friends and friends I will have forever. I hadn't sat and exchanged similar stories outside of the boundaries of a hospital ever and was able to do that with Sue. To hear another's pain that you know so very well is confronting but comforting for often I feel so very alone and in particular when I'm home doing normal day to day stuff.
AT hospital there are others there like me, at home there is no one. I'm not talking about my family, as we are all in this together and have our own pain and hurt that we have to somehow deal with. I'm talking about the visit to the shops, seeing the neighbors, walking to the park, driving in my car, watching other families, the list goes on. Simple mundane things that we all take for granted remind me of how alone I am.
I've just put my beautiful kids all to bed and I'm about to follow. I hope sleep comes soon.