Wednesday, July 6, 2005
Dylan is doing much better today and we have stayed in the room in front of the television and playstation all day. Dylan has vomited a couple of times and he is starting to refuse to take his medication orally now. He won’t even let me give him the liquid form of the medication, it’s very frustrating and I hate having to battle him like this. It has taken me 4 hours of threats and bribes to get him to take 3 out of the 4 tablets so far! I also have to try and get him to agree to changing his G-tube dressing and the broviac line dressing. Then later there’s the GCSF injection into the leg and of course hooking him up to TPN (I.V feeding). Generally Dylan is very good, after all it is a lot for a little 6 year old boy to tolerate everyday. I guess he is just getting sick of it all, either that or he is picking up on my depressive state today.I am really missing Tim and Cain. I made the mistake of listening to the song that Tim and I had as our bridal waltz, and I just burst into tears when I heard it. Life was so good then. If only I knew what I know now and I would have enjoyed it more. Tim and I met and fell in love in 1990 and by 1994 we had Cain. After Tim and I were married in 1997, that’s when we decided to have another child, and along came Dylan the following year. I remember the day we brought Dylan home from the hospital, Tim pulled the car into the driveway, and I remember getting this over whelming feeling of happiness, life couldn’t get any better when you bring home a newborn baby to enjoy. By the time Dylan was a few months old, I started working for Australia Post part time at night, because Tim and I had the desire to become home owners. By 2003 we finally moved into a home of our own, and well, you all know how our lives changed by 2004. It’s amazing how when you just get your life into some sort of order, the rug can get pulled out from underneath you in a matter of moments and life will never be how it once was. The worse thing is it happens to many families but you never think it will happen to your own. You question everything you have done in the past, Was I a good person? What did I do to deserve this? Was it something I did to cause this? Then your questions turn into, Why didn’t I spend more time enjoying my kids? Why did I work so much? Why did I not appreciate what I had? I know when Dylan was little, I worked a lot and the time I spent with my kids was not quality time, I was always too tired. I always felt guilty but I justified my long hours at work with the fact I was doing it for my kids, I was getting a house that would be our family home forever so that we wouldn’t have to keep moving from one rented house to another all the time. It’s ironic, because by the end of the year we may run out of options and be forced to sell that family home anyway, but I will cross that bridge when we get to it, it will just be another hurdle through this whole nightmare. I have plenty of time with Dylan now, but Cain is suffering. I miss Cain terribly. I realized that I don’t even know the name of his teacher this year and that next year will be his final year at primary school. I may not even be home in time to see him start his first day at high school. It’s a scary thought. At the same time though, I am so thankful that we are in New York for Dylan’s treatment, there is so much available here that is not available anywhere else in the world for Neuroblastoma. I know that Cain will understand it better when he gets older, that I left him because I had to. I am sure he understands why now, but in a 10 year olds mind it is hard to comprehend. Actually it’s hard for me to even comprehend that we are in this situation! Sorry for the depressing up date today, but as you know, not everyday is a good day.