Tuesday, June 15, 2010

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.


  1. Julie, you are amazing! I can't imagine the stress, and the worry you are going through. You are an inspiration to me.
    We just went through a 1 1/2 years of chemo, blood transfusions, stem cell transplant... with Rob's dad. Everything centers around it. They'd never know from day to day when they would get blood or platelets. I wasn't involved a lot because I was always with our kids (and mostly having to keep them away so they didn't get Grandpa sick), but Rob was with him for much of it. It's not a fun life, and I'm so sorry you have to go through it. I pray for William and your family every day.
    I have a friend fighting breast cancer. She wrote on her blog about her hair falling out. Check out this link if you need a good laugh (or cry). http://thefranksfamilymemories.blogspot.com/2010/03/day-my-hair-fell-out.html

  2. Hot dogs for breakfast! that sounds great. he can pretend he's camping everyday. My sister- in law eats hot dogs for breakfast all the time. So funny! I'm glad he'll eat at least that. My almost 8 year old hasn't even tipped the 50# mark so he's 9 lbs. more than her. I'm sure he's several inches taller though- Kayla has those short genes and I'm sure William is tall. Good luck to you and William in keeping the pounds on. Carnation Instant breakfast is a good alternative (tastier) to boost or other nutritional shakes.
    You in our thoughts and prayers.

  3. Keep your hope alive Julie. We have lots of hope for William too. And don't feel guilty about hotdogs for breakfast! Give that sweet boy whatever he wants. I love that he opens his mouth while game playing. Funny guy. It must be hard to let go of control. It seems like everything takes so long! Just enjoy any bright moments that pop up and allow them a welcome spot your life.

  4. Sometimes all a mom can do is "take care" of the people she loves... it may not always feel like enough (we wish we had more power to control a situation)... but it means everything to those who are loved and cared for.

  5. I'm so proud of you! You have always amazed me, for years. The vibe in your house last night was great. It was great to see William happy at home (he had spunk, folks), all of you trying to eat a meal and Clark catch a lizard- all in one short visit. Just another day, huh?

  6. Thanks for sharing your thoughts and this whole experience with all of us. It helps me to read and remember what is really important.

  7. I am a card carrying member of the control freak club....just give me the end from the beginning and in most cases I can move forward...but having to step into the dark with so many unknowns....that is tough. It is especially tought with so many little guys counting on you and your magnificent ability to juggle so many things...but now, a different skill is required....slow it down and wait for the next ball to drop. As the Aussies say...."good on ya'". You're a champ, Julie and so is Ryan. Uncle Rich and I love you both dearly. We will miss Ryan at Balboa. He is such a Prince! We look forward to huggin you!

  8. You sharing your experience has made me want to have more of what you have...faith in Heavenly Father's plan. Not faith in what I think is best, but faith in whatever comes your way. Your family is being carried right now and you will look back and say "Wow, that was amazing to have strength beyond our own." You continue to be in our prayers. xox

  9. great idea to feed him while he's playing his ds! totally brill. i love that boy. i love you. keep up the good work...praying for you to have strength and courage to face the up's and downs of this journey. wish i was there to bring you a diet coke or give you a shoulder rub. xoxoxo

  10. This is what it took for you to feed a child a hot dog for breakfast? You are the mother of a lifetime Julie! Love that William will eat while focused, we use that with Lincoln. Thank you for sharing each and every day, I look forward to seeing what has happened, and always have great hope that it is a "good day" for all of you. May the Lord continue to carry you, comfort you and provide the angels you need right now. Much love to you Ryan and the boys,