I'm not sure exactly where to begin today but I can only start from my first thought and that is of the councilling session I had today by a lovely man in Cottesloe. He asked me what I hoped to expect to get from seeing him today and I said I hoped for some clarity in my mind about the decisions we are faced with. In the first half hour I felt a little disappointed as it didn't look like I was going to get that and then we started talking about my fears of the future and my fear of jayden dying. He explained to me that if I could find some place of peace within myself in that happening I may find clarity. When I thought about it i realized he was right. That's not to say he will die tomorrow or the next but an acceptance and peace within myself of that indeed happening gave me a sense of clarity. I believe if I find that then not only is this decision so much clearer but then maybe i will be able to truly enjoy him and be with him in every sense and way possible.
I asked him how do I do that and he told me he can help me and gave me a job to write a list of what that all meant to me.
Danny and I were due back in hospital today to start a whole bunch of tests to get jayden ready for round three. As I sat there in the waiting room I felt numb. Exhausted and a very great sense that I needed to cry.
We went through the motions of the obs which Jayden was happy to do, the dressing change of his broviac that he screamed all the way through and the bloods taken from his lumens. They then gave us the forms to go get the snot test and his X-ray of his lungs.
As we walked out the door we both decided no way were we putting him through another snot test. Upon deciding that we went to do the X-ray. They called us in not long after we arrived, and as soon as we walked in jayden became upset, he's been here before and it wasn't fun. The nurses wanted us to sit him in a chair so that his back was resting on the back so they could X-ray his chest. He screamed his head off, cried for us to stop it and fought like mad. Danny and I looked At each other after trying several times to put him on the chair and our faces said it all. Danny said ' we don't have to do this' and I knew what he meant. Neither of us have the emotional energy or strength to do this anymore. I knew at that point we were done. As hard as it was to accept, this is it. No more. I struggle with it still but I know that neither of us or jayden were up for round three. I'm sad, I can only hope now that I find that inner peace and enjoy my little boy every second of the rest of his life.
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