Control Freak

My eyes are fuzzy and my brain is foggy, but I recall that today was a good day.

I force fed William a hot dog for breakfast. Yes, this may become a trend because:
1) he agrees to eat one
2) it's meat/protein
3) it's lots of calories.

Now I've made my peace with the guilt I feel for grilling hot dogs before 10 AM. And perhaps while I'm in the confessing mood, I have fed my children cookies and ice cream for dinner on a hot Sunday afternoon and I'm a better mother for it!

William received a new DS game from all our neighbors today and while he was playing it, I discovered an amazing thing. He will open his mouth and eat what I put into it (within reason, of course) while in the zoned out state of video gaming. I know, I'm sounding like a horrible mother who caters to every whim of a child. But as I laughed about it with Lisa today, she pointed out that many overweight people get that way by unconsciously eating while watching t.v. or playing video games. My mission right now is to pack on the pounds onto my very scrawny 8 year old who is tipping the scales at 59 lbs. In the spirit of competition (for those that know my siblings and father, and I guess me too) William is in danger of letting his 6 year old brother pass him up! We can't let that happen!

William seemed more tired today so I'm assuming he'll get another blood transfusion on Thursday. But who knows? (It's a life theme I'm catching on to). I won't know until we show up for the blood draw. He seems to be having more pain in his bones, or he's learning to actually tell us he has pain. What a tough kid! The pain could be a side effect of some of his meds and/or part of the disease. I gave him a bath and changed the dressing on his Broviac (central line in his chest). He felt much better as I let him just sit in the tub and soak. It felt so good to just care for him. I hugged him for a while before he went to bed and stroked his hair. I know his hair will probably start falling out soon and I feel prepared, but I'm sure it will still come as a shock. Losing his hair is William's biggest fear right now. And that's good. I'm glad that's his biggest fear. I wish it was mine.

Ryan and I have been riding on some kind of crazy roller coaster. Since we've been home, the physical exhaustion has really set in. But we are so, so, so glad to all be together. The emotional exhaustion never changes. One of the hard things about this process is the feeling of limbo we can't get rid of. It was torture waiting for a diagnosis for 10 days with no goals to focus on or work toward. Now we have goals and a plan, but there is nothing we can really do to guarantee that we achieve our goals. We can do everything the doctor tells us to do with precision, but William still may get an infection, his ANC may take longer to recover, the tumor may not respond the desired way. . . . Everyday we know William's health could have a setback. We tried to calendar his treatment schedule, but that got overwhelming because so many things that we can't control could suddenly set us back 1 or 2 or 3 weeks. Maybe more! Then everything shifts.

Do you see a trend? I want to control things. I want things organized. I want to see the light at the end of the tunnel. Perhaps that is some of the refining that is taking place in me. That's a good thing. I'm learning and practicing faith and hope. I do have faith. I have lots and lots of faith that William can beat the odds. I do have hope. I have lots and lots of hope that what happens on this journey will make us all better, stronger, and more loving.