Loving waking up to a boy that's happy, at least if it's only for a moment, and because he's playing the wii. It's month 5 I think on the pulse of Prednisone,and I have been doing my own research as to how to help him through these hard days. I found them saying that letting them zone out to computer or wii, or whatever-- is okay. I like to have "permission" for this kind of activity as usually I'm pretty strict and only allow the wii on wiikends and the limit computer time as well.
He's not been too well on this pulse, but I have approached it with a different attitude. So far, I've only fought with him, and acted like him a couple of times...remaining calm and loving when you have a psychotic five year old amongst your 5 children, is easy! I'm kidding, it's pretty insane actually.
At the hockey game, he had a hard time settling down, as they make him pace and wander around physically. Majorly agitated. He was in heaven when we walked into the box and there was a HUGE bowl of popcorn sitting there waiting for "him." He ate so much, the entire time--cookies, pepperoni, french fries and more that he had a really big tummy ache after. On our way out the door, as we left a little early with the kids beginning to have melt downs, he couldn't leave the room without picking up and eating every last piece of pop corn. It was kind of sad to see. It was like he was compelled to keep going, even while feeling sick. Boo.
It's kind of funny, to keep giving him the steroids each day, as he's having huge fits....it's like offering an alcoholic drinks...only in this case, in the end, it will help him. I guess chemo is much the same. Watching him take these chemos is so so hard, but knowing that they will save him and hopefully cure him, well, there is truly no choice.
At the moment, he's running around tormenting his siblings and begging for food, and singing about food. This month, it's "nooooodles with salt and pepper, salt and pepper, salt and pepper and cheeeeeeeeeeeeeeeese1" That is to be sung, not stated.
Each day I wake up and greet the day with a sense of relief that he is alive. A sense of dread, that our innocence is lost and shattered, and probably not comin' back anytime soon. Thankfulness that I have my faith and in the loneliness, my God is my best listener. Desire. Desire for a calm spirit and heart. A desire for ultimate HOPE and for forgiveness. A desire to be less hard on myself, and not try and be super mom. A desire to be a better mom, wife, friend, daughter etc. A desire to serve my Lord and to find the silver linings.
I'm begging for so much, but in the mean time, I'm accepting my life, knowing full well that we all have our burdens. God, give me strength to use my weakness for something other than wallowing.