October 26, 2007

Crazy day here - not exactly perfect for the dieting diva, but full of life for the crazy cancer mom...

Tonight was a Halloween Party with a local "relief" group for children with life threatening illnesses. First of all, let me enlighten you. It takes an enormous leap of faith to have to admit that you have a child with a life-threatening-illness. Maybe some parents make that transition more smoothly than I did. All I know, is that every time I read that qualifier on the group's website, it still makes my heart sink to my knees...

This particular group serves children of all diagnoses. The unifying element is that any of us could lose our children. Its a sobering reality at times. We also belong to a different local group that only serves pediatric cancer families. These two wonderful organizations have been our sole source of family entertainment for the past few years. I am grateful beyond words to them.

Its a fascinating thing to attend an event like tonight. On one hand, I find it extremely life-affirming and positive. Everywhere you look, there are families just like yours. No one bats an eye at a wheelchair, mask, or bald head. We're all in the same boat - just using slightly different oars or life jackets. We're all facing down the same demon - death. But mostly, we're all enjoying the same thing - every minute we get to spend with our kids.

Having a medically fragile child is like getting a daily message from the universe. Every time I see her tire before she should, pause a second going up the stairs, pick up the latest hunk of hair to come out...I hear the whisper in my ear, "Appreciate her. Hug her. You never know." Of course, no child comes with a guarantee (or instructions!). But a medical child reminds you of that constantly. Its something I've come to be grateful for.

The Halloween party was not without its stress, or effects on my diet. I did manage to start the day off well, eating my regular eggs with cheese and onions. (I'm telling you - my breath is just permanently awful...) But, as I spent the day in crazed overdrive, trying to finish sewing two princess fairy costumes, my eating habits degenerated a bit. I didn't dive headfirst into the box of trick or treat M& M's that live in my garage....but I did surrender to peanut butter on some savory saltines. While the protein of the peanut butter would fit the bill for most carb-conscious people, I will politely remind you that peanuts and I do not get along well. Peanuts leave me red-faced, swollen, and generally speaking - less than healthy. Ah....the joys of limited funds, food choices, and time to care about what I ate.

I managed to finish most of the princess fairy costumes. Actually, for the party, they had to become merely princess costumes - the wings were sacrificed to time constraints. They are sparkly and fancy and looked great even w/o wings, so the little ones forgave me. Frankly, we haven't quite figured out how to work the wings with a wheelchair yet, anyway. This bought me some more time to think.

Daughter #1 was also very forgiving about the fact that I haven't even taken her fabric out of the bag yet. She borrowed a skirt from me, and a much-coveted gypsy coin-scarf - so she was able to fancy it up and make her dad nuts from the ringing. The pester factor totally over-rode the feeling-neglected-by-my-sewing-machine issue. Glad to be able to work the system...

Once at the party, I was, again, thrown into my alternate universe of the med-mom. A huge part of me wanted to scream for joy because we don't have to mask Avalon anymore. Problem is, we really should - she's probably as immuno-compromised as before. I think we're going to have to revisit that when we finally narrow down what auto-immune issue she has. For now, we rather blindly chose to be carefree - so my heart walked this odd line between elation and panic.

Then there was the issue of her "chariot". This was the first event she's officially "wheeled" to. She's always been in a stroller, but the chariot was a new twist. On one hand, its fantastic to get to take her without tears. She grinned and enjoyed her way through the entire night. She was able to get out of the chair and twirl and bounce and explore in a few rooms. The chair gives her the freedom to spend her energy where she wants, instead of losing it all just getting there.

On the other hand, this was yet another reminder of how much life she is continuing to lose. Even riding in the chariot, she was exhausted in a few hours - and begging to go home. How devastatingly tired do you have to be to want to go home after riding everywhere? I think she's in far more trouble than what she lets on. That's the hidden beast that plays havoc with my diet resolve.

As for the actual diet, the party didn't help much with that, either. They provided dinner for the families, and it was delicious!! What it was not...was geared to my anti-carb plan. We had our choice of rotini or bow tie pasta, our choice of alfredo or marinara sauce, then our choice of chicken or sausage bits to go on it. I chose bowtie, alfredo, and chicken - and topped it with freshly grated Parmesan. It was literally heaven on a plate! God bless the people who picked the menu - it felt like eating out at an expensive restaurant...for free. Wahoo!

Of course, I could have merely partaken of the pasta and been happy with my rotund self. Oh no, mon ami, I had to go all hog-wild. In addition to the pasta delight, I did, indeed, eat a piece of garlic bread. And if that wasn't insult enough...I also ate the dirt cake complete with gummy worms! Ha!

As my sister, and several of you, keep reminding me - this journey is a lifestyle change. As much as I would love to "take the hill" in a day - the fact is, I'm in for the long haul. Going to events with the entire family, is a rare blessing. Our world isn't what it used to be, and will never, again, be what we had originally dreamed. That's OK. I've decided, its also OK that I choose to live and enjoy the special moments when they come along. Getting to laugh with my kids and experience a place and things we can't normally afford - is a beautiful gift. Watching my girls pick out a new dress-up outfit that was donated by some kind soul, was delightful. Listening to all of the kids laugh, like they have no cares in the world...was PRICELESS. Who am I to pollute these memories with my personal stuff? I didn't, I won't, and I don't regret it.

So like I said, it was a crazy day here. I sewed like a madwoman for hours. I got in and out of the shower in record time. I dressed like a ragtag, colorblind witch because a) it made me laugh, and b) (most importantly) in allowed me to wear a witch's hat with purple hair that camouflaged the fact I didn't have enough time to detangle/brush my own hair! I ate things I shouldn't, and enjoyed every bite. And lastly...I thoroughly enjoyed the glee with which my children embraced their evening.

Thin may be in, but a child's smile wins by a mile.......

Alicia Hall
Losing weight, and my mind, to raise awareness for pediatric cancer
www.crazycancermom.com

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