Food, Glorious Food

Food, glorious food!
Why won't you just try it?
Three banquets a day,
Your least favourite diet.

Just picture a great big steak
Is it just your 'tude?
Oh, food!
Nourishing food,
Fattening food,
Glorious food


I found this blog today that sums up our life quite nicely.

We are living off a diet of Triscuits and Cheerios. It is unbelievably frustrating, especially when she was eating so beautifully. Even fool-proof foods (like cheese!) are getting a big thumbs-down. She cut 6 new teeth in the last couple of weeks, so in return I am cutting her a little slack. It doesn't change the fact that I am still tearing my hair out come mealtime! I just hope it is teeth and not because we are taking her Prednisilone down to a "normal" range. She's just like a delicate flower; a delicate, ANGRY and LOUD flower.

We have been laying low since our hospital stay, with an occasional beach day or trip to the pool. She kind of enjoys the pool, but she really hates to be outside. She is extremely photosensitive and refuses to wear sunglasses. Girlfriend is now 20 months old and gets bored. Fast. I'm trying to show her how much more fun it is outdoors, but her face stays firmly buried in my shoulder. It's just another hurdle we face in the laundry list of our daily routine.

Everything seems to be getting harder at the moment. Eleanor is in good health, but her irritability, lack of appetite and sleepless nights are very wearing. We try to stay grateful as news keeps pouring in from other families we know and none of it seems to be good.

Day to day stuff gets really hard when bad news is all around.

I hold all the children and families of those children in my heart. Every night when I creep into Eleanor's room, I watch her perfect little self sleep and say a prayer for everyone we have met on this journey. It is devastating to hear about children fighting for their lives. Babies. Wee ones. Sometimes it gets to be too much to bear. Seeing all of them struggle and know that it's only a matter of months, maybe years, before we go down that path. We cross our fingers and our toes that Eleanor's story will be different, but all these stories hammer it home.

Cancer sucks.

Shouldn't the good moments be unbelievable when we have so much to be grateful for? Why do they feel so bittersweet? I care a lot about those kids who are suffering relapses or complications, I guess. I am greedy; I want all of them to get better, Eleanor included.

"Please sir, I want some more (children to win their battles)."

More?!??! MORE?!???

Oh, speaking of which, Eleanor is now signing! She can sign "want" and "more". Her "want" sign is really more of a "GIVE IT TO ME ALL RIGHT NOW", but her "more" is cute and precise and she knows exactly what she is saying/doing. The first time she did it was for a balloon we were playing with, and I literally ran out of the room crying and screamed, "Kris, she SIGNED!" And then I realised I probably should go back to the balloon game and give the poor girl "more" because that's what she asked for! Whoops. I'm excited to try and teach her a few more signs as girlfriend is really stuck on only saying "hi". Daddy allowed Eleanor to film herself and this is what she came up with.

"Hi" is a great conversation starter, but she's going to need something to back it up. Cuteness can only get you so far!