Defiance Ohio in New Jersey

Lately morning feels like I'm not winning. It's like I know a lot...lots of missing.

There's a skyscraper take over on 34th and Civic Center Blvd, and I can't go explore out of fear. The same old fear and the same old doubts like why cancer scares the hell out of me.

This time, this year is bigger than us; it goes on long after we're gone! This cancer has taken it all out of us, made us look at our lives through new eyes...i love you in so many ways. You taught me to give, to lose, to love, to be lost and now how to want.

I held your shoulders. We cried when we got the news. Soon we can say, that was last year and we were so scared. Astrology says it will be fun to forget last year in the New Year. So when it becomes May, we'll all walk together.

This time, this year is bigger than us; it goes on long after we're gone! This cancer has taken it all out of us, made us look at our lives through new eyes...i love you in so many ways. You taught me to give, to lose, to love, to be lost and now how to want.

Thoughts - not fully cooked

At this point the idea of having our daughter at home in order to avoid a hospital stay is just laughable. Life lesson #1: Hospitals are unavoidable. In fact, hospitals and doctors can actually be a good thing. The disorder that our little one has affects 1 in 10,000,000 (that's 10 million right?) and somehow these people know how to treat it and get her better. Medical science is remarkable. I often wonder why in the hell would these doctors and nurses want to work in this field - pediatric oncology is pretty damn depressing but to literally be able to save a child is beyond life giving.

I'm beginning to think differently about all these drugs that she has to take. Everyone has told me as time goes on things will make more sense and it will get easier (--> see previous post about my feelings on time). Our choices are as follows: 1. give her these meds and hope the side effects are minimal OR 2. Don't give her the drugs and the OMS (1 in 10 million disorder) goes untreated. So the latter is not an option. We have to go on faith that these recommendations are correct and in her best interest. We do not want our child experimented on like a lab animal!!! Then I realize that experimentation with other kids is how we have gotten here today. I've gone from hating these drugs, being skeptical of them, and envisioning them killing my angel's insides to accepting them for what they are. A temporary cure to what ails her. We will wait and hope that in the future we will be less reliant on them but for now they are her lifeline.

T.I.M.E.

I asked him what quantity of time is smaller than a moment? He said a second...I've had moments that have lasted for hours. That thought made me smile because I understood and could relate. Time can be a real bitch sometimes. Its always there but constantly moving. There are all these different kinds of time to quantify and qualify existence here. I thought up a new kind of time that I'd never known of before. I've experienced it but never labeled it as such. Cancer-time.

Cancer-time makes moments hours and hours into brief moments. Its not all bad though; those really bad moments in Cancer-time tend to blur together. One year in Cancer-time goes by really fast. There is so much to do that you don't even notice the moments turning into hours, days or weeks then finally a year. Cancer-time does not move in a steady pattern like normal watch-time. Its swirls, turns and flips back on itself making the whole thing more unsettling. When Cancer-time takes over, I feel like I've just gotten off a roller coaster; I'm steadying myself, fixing my fly aways and trying to find my footing.

At night it is peaceful and easy to go to sleep even when in Cancer-time. The problem is when you wake up. Usually regular time tells you it is 2am and that means there is 4 more hours to sleep until the day begins. When Cancer-time is in effect, that 4 more hours is a distant vision that is intangible. Sleep = peace = time used wisely. Cancer-time really fowls up this equation.

I guess the worst thing about Cancer-time is that there is no end. It is always moving in its erratic way making those under her spell feel continually unsettled. I wish there was a cure.