Laying here rubbing my boys head while he falls asleep and Im a little depressed. Each day that passes gets harder and harder because we know that at any moment things can start to go bad very fast. Im really dreading the moment that it does and he starts to lose control of his senses and normal every day function. I know its easy for some to say just concentrate on the good times and dont think about anything bad happen. Well, it doesnt work that way when you know without a doubt, you have a child that could be gone at any moment. All you can think about about a thousand times a day is, I hope he doesnt suffer and I hope his siblings will be okay and about a hundred other things. Over and over in our minds and there is no getting away from it. Yes we enjoy the great moments every day but at the same time you realize it wont last. We are doing everything we can to make every day of his life and the time he has with his siblings enjoyable so that they all know they did everything they could to make every day a great one. With winter coming the days will get more boring for him because the cold weather and early sun down will make going outside more difficult. He was pretty bored today and wanted to go up to our room to watch me clean up and try to make room for a single bed for him to sleep on. Hes been sleeping with us but for some reason he wants his own bed in our room. He asked me if I mind that he sleeps with us and I said not at all! I told him I enjoy watching him sleep and rubbing his hair. Its also good for us to know when he gets up to go to the bathroom (about 10 times a night)or needs something. Even though I dont sleep that well, I get enough quality sleep and would miss him if he wasnt there. If he sleeps in his own bed Id stay awake listening to him breath or have to watch him until I fell asleep. Im sure eventually Cindy or myself would end up in bed with him. That might not be a bad idea. Cindy could sleep with him and I could have the king bed to myself!! He just woke up and looked at me with his dazed look. Does anyone know if they sell shorter single beds an 8 year old would fit on. The crib mattresses are too small. I have to check into that. Tomorrow we go to Childrens. Hospital to get results of MRI and another vaccine shot. He told me tonight he hates going because he has to chew about 6 to 8 chewable Tylenol. He hates taking pills and chewing so many tablets. I told him he should try taking the pill since he eats food much bigger than the pill would be. You know how kids are though, you can explain how easy something is but they just dont believe you. May check to see if they have a liquid he could try. Im not confident well get good results on the MRI because its been 5 months already and since they didnt get the results they hoped for with the radiation, I dont expect to hear good news anymore as time goes by. What ever happens we will continue to do the very best we can for him and give him the best life possible. Thank you all for your amazing love and support and continue to pray that some small miracle blesses Joey. I would gladly trade my life for his but life doesnt work that way. Hope to have some awesome pics uploaded soon. Good night!
Posted on: Mon, 20 Oct 2014 03:18:00 +0000