October 28, 2007

Today, Avalon, my cancer child, had the honor and privilage of being invited to be a part of a fashion show to raise money for pediatric cancer. The show was the Black Tie Blue Jacket Fashion Show at Saks Fifth Avenue, here in Columbus. The event raised money for the Columbus Blue Jackets Foundation and their work with Hats for Heroes. We've known about the fashion show for months, the tickets to last night's game for only a few weeks. So while it was fun, we really didn't plan this weekend's Blue Jacket-a-palooza ahead of time.





Tonight's fashion show featured Blue Jacket players, their wives/girlfriends, and local "heroes" - children affected by cancer. Some of the children were on active treatment, some were off-treatment like Avalon, and one was the sister of a small boy who lost his battle. The children were matched with a player/girl combo. Each child walked down the runway twice, with two different player/girl teams. The players and their wives/girlfriends changed outfits before the second "walk", but the children remained in the same outfit.





The entire event tried to make the kids feel as special as possible. The children were allowed to pick their fantasy outfits the week before the event. I don't know how that translated for the boys, but I'm here to report that my little princess thoroughly enjoyed her fashionista session. She tried on several I-couldn't-afford-them-in-a-million-years dresses, and checked their "twirl" factor to the delight of the Saks' staff. In the end, she settled on a delightful ivory dress with a lace bodice, poofy tulle skirt, and full length black velvet jacket that was trimmed with lace and pearls. Honestly, it was exquisite. I'm sure it will look lovely on a little girl somewhere in Columbus.... Since I would have had to sign the check for it, it had no hope of meeting the lesser dresses that currently reside in her closet.





The day of the show, the children reported to the store a few hours before the show, for their hair appointments, make-up sessions, and professional photos. By the time we got there with Avalon, the organizational elements had fallen apart a bit, and much to my dismay, she never got to pose for a professional portrait with "her man". However, the photographer soothed my wounded heart better than I could have hoped - with the spectacular photo I shared above. No picture ever said it better...one big hockey player - holding the hand and heart of one little girl.... I love it.





Avalon did get to pose for some special pics with a different heartthrob, a charming young man, Joe. Although Joe is 20, he recently finished treatment at Children's. Joe's bone cancer is a pediatric cancer, so people diagnosed with it, are preferentially treated at Children's. Given that Joe had just graduated from high school when he was diagnosed - it really was the best place for him. While I loathe the beast that brought us together, he and his warm family are examples of the reasons I tell people I'm not all sorry for this new life. Joe is the epitome of what we want our sons to grow to be. He's gentle, caring, thoughtful and funny. He refused to let the beast beat him down, even as it robbed him of a leg. After all, in Joe's own words..."Its only a leg." How many "adults" would be mature enough to look at it from that perspective? Joe is one in a million.




Prior to the pictures, our fashion model had her session with the stylists. While the hairdressers were kind, they weren't terribly prepared for the special needs of a child whose hair is thin, and radically different lengths. Prior to her brain surgery, Avalon had 10 quarter-sized sections of hair shaved out. When you add all that was shaved for the shunt incisions, she lost probably a third of the hair she'd worked so hard to grow back (post chemo). This was more traumatic for her than we had anticipated - so we've spent the past 10 months working diligently to "cover" her "shortcomings". Now that her auto-immune issues are causing her hair to fall out, she's even more sensitive about how it looks. Unfortunately, high-end hairdressers, in adult salons, aren't necessarily used to dealing with her unique issues.





When all was said and done, Avalon's hair was partially curled, held up by two bobby pins, decorated with a pearl bow that I'd brought from home, and sprayed stiff as concrete. Ten minutes and 10 photographs with Joe later, it completely fell apart. Thank goodness, she's not my first girl, and I've been playing hide-the-holes for nearly a year. I managed to fake it all back together pretty well. Oh the joys of public events with special kids!





After pictures, we only had to wait a few minutes before we lined up for the show. Avalon's first hockey player was her beloved Dan, and his girlfriend, Kim. Poor Kim, she came into this event as the"other woman". When we broached the subject of Avalon walking with Dan and his girlfriend...Avalon was horrified! "What do you mean?! I'm Danny's girlfriend!!" It took some quick talking to convince her that Kim was the "big girl" girlfriend, and Avalon was his special "little-girl" friend. She wasn't happy - but she gave up griping. I was more than a bit worried about what my opinionated little stalker might come out with...but she surprised me.





I had forgotten to allow for the "wow" factor. As with her much-swooned-over clinic-love, Ryan, Avalon often loses her voice around Dan - at least for a while. During her quiet worship time, Kim marched right in, and stole her own piece of Avalon's heart. Honestly, Avalon had no choice, Kim was every bit as kind and charming as Dan. Avalon liked her enough to share - we were good to go. I'm such a mush, I was weepy. Its a rare blessing to have a stranger shower your child with such kindness. To have it times two...ack, I was a puddle.




The first walk went well. When I left Avalon back stage, she was happily holding Dan and Kim's hands - and chatting their ears off. When she hit the stage, she grinned, waved, and posed at the end of the runway just as in practice. Dan helped her take her fancy overcoat off, and then she twirled like a pro - complete with hands on hips at the end. She and her sissies had been watching America's Next Top Model for weeks and practicing their techniques. She would have made Tyra quite proud.





Backstage again, Avalon had to say goodbye to Dan and Kim as they ran to change into their second outfits. We spent our down time chatting with Joe and marveling at his "bionic" leg that so fascinates one of the other young heroes. You have to love cancer kids - nothing freaks them out. They look at Avalon's "chariot" and don't even see it. They know that Joe normally uses crutches, so they can't wait to check out his new leg. They've all been bald, so the baldies among them don't raise a single eyebrow with the kids that have grown them back. Its an odd fraternity, but, in a strange way, quite a life-affirming one.





Soon enough, the players and girls came wandering back. That's where the fun really started. I have to say, I really still know squat about hockey. I know the 4 or 5 players we've met several times, but I don't know the new guys, their specialties, their bios. Its nearly impossible to make me "starstruck" about anyone on the planet - so these dear hockey players have no chance at making me impressed enough to behave. They pretty much get me as myself. This, sometimes, can make me slightly irreverant, at best.





It happened that Joe, the ultimate hockey fan, was behind Avalon in the line-up. He proceeded to "enlighten" me as to who was who in the expensive duds in front of us. I heard about "draft pick", "really fast on the ice", "great catch", blah blah blah. Now I love Joe, but he could have been speaking Greek or Finnish for all I understood. I will say I was honest, I admitted to my failure-to-understand and bigger failure-to-be-impressed. About that time, one of the players set off the store alarms again. The runway and stage were set up exterior to one of the mall-side entrances of the store. The models actually "left" the store to enter the stage. Not a problem, except the clerks forgot to remove some of the security devices from the expensive items. I think 4 or 5 alarms were set off before the first walk. I'm sure the dressers tried their best, but again - a player was setting off the alarm. Mind you - it wasn't easy to figure out who. As the players milled around, the stupid alarm would go off and on - leaving everybody searching themselves. When nobody could find it, we all gave up.





About that time, I finally caught sight of the young man in front of us. Mainly, because Joe was impressed he was there...and because he was grousing about his "ensemble". It happened this young man was handsome, had a hip haircut, and winning smile. To be sure, some Saks dresser saw a perfect "Man"A-Quinn. In reality, he was horrified. They'd given him...a manpurse. Now any old manpurse is bad enough. But A) putting a man-purse on a hockey player is damn funny. And B) having it be a man-purse that is white, with black piping and a black strap (not distressed brown leather - something remotely manly...), is so funny it hurts. This is where my I-don't-get-impressed-by-anyone thing kind of came to haunt me. I couldn't resist...I had to tease. To keep quiet...well, it would have been criminal.





The conversation went something like, "You know, you really could work that purse. I mean, c'mon...sell it, honey. Oh you can do it..." (you can guess my inflections) Answ: "I know. I should. (big grin) Nah, I don't think I can do it." Me; "Oh puh-leeese? Seriously, we'll pay you to go strut that thang. C'mon, I bet we can get these guys to ante-up!" It went back and forth like that for a couple of minutes, when I realized I'd never even been introduced to this guy! I finally said, "I'm so sorry, I've never even met you and I'm being ornery." His answer was a grin, and "No, don't worry - I have a purse, I deserve it."





About that time, the alarm went off again. As he was begging the universe for it to be his "purse", a clerk came to check the bag. Sure enough, Victory! The purse was the offending object. As the clerk took it away to remove the security tag, the player was hoping she'd "lose" it. I did try to redeem my earlier finkiness - and offered him my ample rear-end to hide behind if the lady brought the purse back. He declined the offer, but managed another grin as the much-aligned bag was returned to him. Poor fellow...I at least wished for photographic failure to happen as he pranced his purse down the runway. Only time will tell if the universe decided to smile on him...





As for Avalon, she was a bit put-out having to watch Dan and Kim chat with another hero. That is, until she met her new "team", Ole-Kristian and his lovely partner Guro. We couldn't have asked for kinder, gentler people. Avalon, the great man-hater, instantly warmed up to Ole. And again, I was shocked to meet a hockey player with a heart of gold. These guys seriously are mis-represented! Guro was not only model-beautiful, she was as sincere and lovely as Kim had been. I can't tell you how wonderful it was to be so surprised. At our first game, I had been impressed that the players were nice enough to "fake" sincerity around our kids. I'm so ashamed, and yet proud to report how wrong I was. These men, and the women they love, are truly committed to our children. They are warm, caring, thoughtful people that I'm proud to say I've met. I could care less about their profession, its their hearts I'm in awe of.





After the second walk, Ole and Guro surprised me by asking more questions about Avalon's diagnosis and prognosis. Ole had even recognized a publicity photo of Avalon. The photo was when she was barely two, and bald from chemo. She looks quite different, so it was impressive that he searched her out - and took the time to ask. Apparantly, I wasn't the only one they touched...Avalon has added the two of them to her "who loves me" list. She's insisted she get to make pictures for Ole now too. That's pretty high praise - we have to "convince" her to make pictures for Jody - she tells us "He's a nice guy, but I really love Danny." To ask to be allowed to make pictures for Ole...well, he must have seriously impressed her. Poor man, I'm not sure he's ready for a pint-sized stalker...





The last funny of the night, has to return our focus to our family hero, Dan. As I chatted with people backstage, I thought my hubby and daughter #1 had retrieved Avalon. Next thing I know, here comes hubby, sans children. When I ask, "Where are the girls?" The answer? "I don't know, I thought you had them." Hmmmm, that's interesting. It didn't take long, or many inquiries, to find out that a certain hockey player had been spotted trotting off with them. (their relationship is legendary - everyone watches them because they think Avalon's hero-worship is cute) No problem, we'd pretty much deduced the obvious on our own. We spent the remainder of the evening kid-free, as the world's best baby-sitter entertained our wee-one. I mean think about it, who better to protect your kids than hockey players?! Heaven help the mortal who dares to anger him. Personally, I'm crossing my eyeballs, fingers, and toe hairs hoping Dan sticks around through the dating years...he could save me many sleepless nights! I can't possibly think of a better threat to some wayward teen...





The evening ended with many hugs and thank you's to Guro, Kim, Mandy Shelly, and various Foundation staff and supporters. Its hard to feel like you ever get to thank them enough. The players, their wives and girlfriends, and generous benefactors donate countless hours to help raise funds for not only our local Children's Hospital, but also for national pediatric cancer research organizations. Most of them don't have children, and none of them have been touched by pediatric cancer. They choose to selflessly love and work for our children. How can you ever say "Thank You" enough for that?!





For my part, I will spend this weekend writing thank yous and mailing little girl drawings. For Avalon? My guess is, she'll keep on stalking. Except now, she's added a new hockey victim to her roster, and two wonderful women to the list. While they will undoubtedly be hugged, talked about, followed, and buried with pictures of snakes and hearts...the three "newbies" will have to understand. They cannot hope to reach Danny status. He owns such a huge hunk of her heart...I fear I'm a distant second most days....





That's OK, I understand. I'd stalk him if I was 20 years younger.



As for the dieting diva? Well, to be perfectly honest, her starvation routine is in need of a total overhaul. I've taken the stress of this past month, and used as a collasally good excuse to return to bad behaviors and pathetic ways. I'm irritated with myself, and honked off at my ba donk a donk butt. (thank you, Jessica!) Am I giving up, surrendering, or quitting? NOPE. I'm just realizing, I have some mental sludge to flush out before I dive back in.

Its a journey... its a journey.... its a journey......

Let me live in my delusions for a few more days. Its nice here.

Alicia Hall, losing weight, and my mind, to raise awareness of pediatric cancer and the lives it touches
www.crazycancermom.com
A) Go Blue Jackets!
B) Please feel free to email me at alicia@crazycancermom.com
C) I love your comments! Or - you can shut me up by passing on the blog....

October 27, 2007

WARNING: Due to necessary background info - this post is long. Get over it, or move on now. If you choose option B - may the fleas of several camel herds invade your skivvies...

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My four year old daughter is a stalker. She's a loving, caring, protective stalker...but truly - I think she could be categorized as a bit "obsessed".

It all started in Feb of 2007. We were invited by our local hockey team, The Columbus Blue Jackets, to their "Gold Ribbon Game". The Blue Jackets Foundation raises an incredible amount of money for pediatric cancer research and various ped onc charities. The Gold Ribbon Game is part of their efforts to raise awareness. They invite local cancer children to attend the game, participate in aspects of the game (riding the zamboni, throwing out a puck, being interviewed on the Jumbotron), and to come to a "meet and greet" with players after the game. Prior to this event, I knew absolutely zero about hockey. Post event, I knew little more about the game - but I knew I LOVED the Blue Jackets.

At first, I thought I was crazy taking 3 girls to a hockey game. All I'd ever heard was that hockey was violent and the fans liked it that way. What in the Sam-hill was I going to do with 3 of the girliest girls there ever were at a hockey game? I'm thrilled to report, I was utterly, completely mis-informed. The game was exciting, fan-friendly, and an absolute blast! We cheered, we clapped, they danced. In all, we enjoyed every moment of it!

After the game, we attended the player meet-and-greet. And there, my friends, a lovely young man named Dan Fritsche, became a victim.

Just as the meet and greet started, the team reps requested a group photo of the players, heroes (the program is called Hats for Heroes), and the police officers in attendance (the local FOP helps with HFH). An important note here - Avalon is man-shy. At Disney, she wouldn't even pose with Peter Pan, for Pete's sake. Here, they wanted her to smile with huge, scary hockey goons and guys in full-out police uniforms. All I could think was...Right, that's gonna happen...

Being that she was also the tiniest one there, I figured there wasn't a chance she'd show up in the pics. Just then, one of the players leaned down, and asked if she would let him hold her for the picture. She rather leaned back, looked him up and down (seriously, she sized him up!), and did the unthinkable...she agreed! You could have knocked me down with a feather. I thought, I'd better take a pic of this...no one we know will ever believe it.

After the pictures, the kids and their siblings were invited to take individual pictures with the guys and to have the players sign their shirts and hats. Dan was the first player we asked for a picture - so I could thank him profusely for being so gentle with her. After making the rounds of the room, she went back to him and asked for another autograph. She had completely lost track of who was who, and was just doing what everyone else was. Not only was Dan not irritated or annoyed with her...he was very amused and very kind. He told her he'd already signed her hat. At that, she cocked her head, thought about things - and promptly stuck her belly out as far as she could with, "Well OK then - you'll have to sign this!" He laughed and signed on. Poor man, he didn't know what he was in for.

A few weeks later, we were invited to our local Children's Hospital for the opening of the Columbus Blue Jackets Family Resource Center. Its a place for parents of in-house patients to go and get on the internet, do laundry, take a shower, eat. Day parents can go there to use the lockers, breastfeeding rooms, wait between appointments, etc. Its a very big deal. Avalon and a few other Heroes were there for photo ops with some players. Unfortunately, most of the players were ones she'd never seen before. Rats...we were back to Ms. Man-Shy. I took Dan aside and told him I thought she'd agree to anything, if he asked her. I explained how bashful she is, and that she really seemed to like him. He smiled, said "No Problem" and took care of her like she was his own. Avalon was never away from his side. She sat on his lap, held his hand, and did everything asked...right next to her big hero. Oh yeah...the seeds of love were planted.

Moving forward several more weeks, we were invited to be a part of a fundraiser for the CBJ Foundation and the Hats for Heroes project. A few Hero families were invited to attend BD Mongolian restaurants with Blue Jackets players - to thank people for coming and supporting the Foundation. As with the hospital, we're always willing to go to fundraising events, because no one in our family is shy about thanking people. I will hug/thank/chat with anyone gladly. I'm so grateful to have my daughter, I will never be able to thank the universe, or generous people enough. So...I went to ambassador my way around the room, and Avalon went to see...Danny.

As soon as Dan got to the restaurant, Avalon was waiting for him. At events, the players show up in street clothes, and then don the fancy jerseys that the PR team have waiting for them. Its kind of like a performer putting on a costume. Normally, they're not considered "on" until they're dressed and led into the room they're "working". Avalon could give a hoot less about the outfit. She stuck herself to Dan like a fly to a horse's heinie - the second he walked in the door. No amount of pleading on my part worked - she was stuck fast. Dan couldn't have been kinder about it. He held her hand, hugged her, and proceeded to spend the next few hours signing autographs with her on his lap. When a fan would want a picture (without Avalon!) he would gently set her down, then promptly pick her right back up. I was chatting with one of the PR team about feeling guilty she was bugging Dan. His answer? "I'm Dan's age. I would give anything to have her follow me! Don't worry, he's not bothered. He's enjoying her hugging her as much, if not more, than she's enjoying following him. Stop worrying, she's just fine."

During the course of the evening, I realized - he was right. Dan never looked cross or irritated. He looked at Avalon with genuine kindness. And not the manufactured, for-the-camera brand of kindness. No - he treated her like an uncle. When the crowds were gone and he was back to being Danny, instead of "Dan Fritsche, Columbus Blue Jacket player" (said with loud announcer voice...), he continued to "hang out" with Avalon. She "helped" him get his dinner, and fully stalked him while he ate. She worshipped him, and that was quite alright with him. Oh yeah, I fell head over heels in love too. You can't treat my daughter that well - and not expect me to love you!

Several weeks later, we did another PR event with Dan. Same as before, he annoyed fans by signing autographs with his little buddy firmly planted on his lap. He would set her down for photos - but promptly pick her back up. When too many people wanted pics, he moved a chair right next to him, so she could sit there and not have to get up and down. In all, he again, made it obvious that he really cared, not just a for-show tolerance. In all, he was a gentleman, and a wonderful friend.

Over the summer, we lost track. Avalon never stopped talking about him - but we didn't manage to keep her healthy enough to be able to meet up with Dan and his girlfriend like we had planned. He was still a huge part of our family, as Avalon included him in her "who loves me" list - but we didn't actually see him.

And now, we are finally at - today. I told you this would be long! But, if you didn't know the other stuff - you can't appreciate how funny tonight was. Tonight, we were able to attend a CBJ home game, courtesy of tickets donated to a pediatric cancer charity we are involved with. Thanks to a cancer/brain damage kid who doesn't move quickly, a baby who doesn't believe in time schedules, and a mom who needs 8 more arms, we got to the game at the end of the first period. As we were riding up to our seats in the elevator, Dan scored!!!! This was HUGE!!!

The announcer was yelling, the place was crazy - and Avalon was shrieking about "Her Danny!". You would have thought her own brother scored. The entire elevator trip (God's slowest elevator...) she talked/squealed/babbled about how "proud" she was, how happy Dan would be. She kept saying, "That's my Danny!!" The elevator operator and our fellow travelors looked at her like she was nuts. Too funny.

Once we got to our section, the ushers were kind enough to switch our seats to the wheelchair section. We merely asked where to leave her chariot - they made room for us to stay down in the open section - so she could stay in her chair. It was a very kind act, and actually worked quite well for her. Well, the next two periods were an exercise in "Dan-watching". We had to constantly update her as to his location, his actions. She got pretty good at following him herself, after a while. The funny part was her defense of him. He'd get shoved into the glass walls and she'd shriek in defense. "That's my Danny!! You be nice!" Mind you, if he got a good shot in, she'd cheer for him to smash the other guy. What a hoot!

So here I sat, middle-aged mom with a 4 yo in a wheelchair, and her 6 yo sister. (Dad, big sis, and baby brother were several seats down) Sisters 2 & 3 were both wearing purple velvet princess dresses with gold holographic sequins that sparkled like sunshine in the sodium lights of the stadium. In all, we couldn't have looked less like hockey fans. Yet, my girls were screaming like fools for their men. Its important to note, the two little ones yell for different players. Daughter #2 couldn't possibly share a crush with Daughter #3. Daughter #2 stalks her own favorite player, Jody Shelly. While she hasn't had quite as many occasions to interact with Jody, his wife understands her crush and completely endorses it by reminding her hubby to be extra kind to my 6 yo. You seriously have to love these people!

Anyway, overweight, middle-aged supermom and her two screaming princesses were quite the comical lot. The ushers around us weren't helpful - they kept egging the girls on. The band o' men in front of us - weren't helpful either, they found the girls riotously funny. So, I gave in to pressure - helped the two stalkers follow their "prey" and sat back and thoroughly enjoyed myself. And then...dum dum dum dum....it happened. (that was my pathetic attempt at forboding music) Dan was involved in an "altercation" - right below us. Mind you, we were pretty much in nosebleed section - but the view was amazing. So, yes, the "event" was far below us, but it was literally - right in "front" of us - we could see faces/expressions clearly. It started as a typical hockey scuffle - with our wonder boy getting in his fair share of beat-down. During this, Avalon was cheering him on, and yelling at the other players - all pretty normal. Then, it happened.

As the refs held Dan away from the other player, the Shark bad guy reached around the ref - and sucker-punched Dan in the face. I thought I was going to have to sit on Avalon! She started shrieking, "That's not nice!! Hey! You can't hit my Danny! I don't like that! That was MEAN!" I'm telling you - she was the picture of righteous indignation. Kids don't get any angrier than she was. The be-all, end-all was her yelling that she was going to go down there and beat that guy up. She wasn't going to let him hurt her Danny. I think the guys in front of us nearly hurt something laughing. The ushers told her she should. Oh yeah, they were helpful.

As the cameras followed Dan clear off the ice, Avalon was watching the jumbotron, "talking" to him. You would have thought he could hear every word. She carried on a full conversation with him, via his image on the jumbotron. In her mind, he even answered. That's when I really "got it". She actually thinks the entire Blue Jacket hockey enterprise exists for her! I don't think she understands that these are professional athletes. She doesn't get that thousands of people watch these players, or want to get autographs. She has no clue that millions of people watch hockey on TV or know Dan's name. All she knows is her "boyfriend" Danny wears a big red white and blue shirt, and skates around - sometimes getting into fights with nasty guys. She has no concept of his celebrity, his job, his life. To her, he's a nice guy who loves her - and sometimes other people want to say hi to him. She doesn't know why - because he's "her" friend. What a gift, to love someone so much - you're completely blind to what they really are.

For we adults, that altered view of reality can lead to poor choices, bad situations. For my tiny person, her "love is blind" approach serves her well. She sees Dan for what he really is, a kind, gentle young man with a heart of gold. She sees past what society looks at - to the real human underneath the uniform. While I do pity my dear hockey friend for being the object of her stalking, I celebrate him greatly for encouraging her delusions. He embraces her affection - and returns it. Every time he takes time to chat with her, walk with her, treat her like a princess - he gives her back a piece of her childhood that cancer stole. Cancer robbed her of innocence, freedom, and often of joy. She's suffered years of chemical torment, and faces a lifetime of pain. She has endured more medical treatments in her 4 years, than most of us in a lifetime. And yet, she is here, she is happy, she loves life, and she can still pitch a fit and threaten life and limb to "protect her man". I can't ask for more than that.

Avalon has won the heart of a stranger, and he has helped fill a part of her heart that was taken by a terrible beast. Its much easier to stand up to a mean hockey player hurting your friend, than it is to yell at your brain for not working right. Its easier to find strength holding onto a friend's hand, than it is to fight your own weak legs. Its easy to get lost in the love of a friend - because they give you support even when they don't know it. They give you hope - and something to look forward to. And sometimes, hope and love are all that get you through the day.

Yes, my daughter is a stalker. But thankfully, she found someone to stalk, that will walk slow enough she can catch up to him. She's a blessed stalker, indeed.

To "our Danny", I send a heartfelt "Thank You". You'll never know what you've given a certain little girl. ;-)

Alicia Hall - losing weight, and my mind, to raise awareness of pediatric cancer issues and torments

http://www.crazycancermom.com/

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

Please pass on this blog and the website! The more people who visit here - the more kids we can save.

October 25, 2007

I hate my body. No no, not in the normal my-boobs-hang-to-my-bellybutton, my-rear-end-needs-warning-beepers kind of way. I'm beginning to hate it in new, heretofore un-thought-of ways.



First, I should probably provide you with a smidge of pertinent background info. I'm hypoglycemic. In fact, I'm a stupid over-achiever in the area of insulin-production. I'm so hypo-glycemic that during insulin tolerance tests, I black out from low blood sugar - in record time. Drink the nasty goo - out cold in 20 minutes. By medical standards, I'm rather fascinating. By life standards...this much insulin - stinks.



Insulin helps store fat. Let's see, I produce whoppin' boatloads more insulin than I need. Want to guess about how easy it is for me to store poundage? Oh yeah, like taking candy from a baby...and gluing it to my sitting-down-side. I gain weight so easily, I swear I can smell a sugar cookie candle and gain 1/2 a pound!



Not to mention, that low blood sugar is a self-fulfilling prophecy. It works overtime to keep itself in business. It happens something like this... Put any form of carbohydrate into my body, and it will temporarily raise my blood sugar. In response, my pancreas kicks into high warp gear and produces enough insulin for a third world country. When the insulin is dumped into the system, it eats the sugar from the food, and because I have so much of it - most any free sugar in the system. I immediately (and quickly) lose nearly all blood sugar - making me hungry, tired, shaky, irritable...and in search of more carbohydrates...whereupon the entire cycle will start over again. See the issue?



So, while it has become a bit cliche in the past few years, for me, its true. Carbs beget carbs. The more I eat - the more every cell in my person screams out for them! Its a vicious, mind-altering circle. It sounds so simple. Avoid high carb, high glycemic index foods - and curb the appetite of the beast. Oh yeah, and Rome was a 24 hour project.



On the rare occasion that I've managed to break the choke-hold of the beast, I do feel about 1001 times better. The overwhelming issue is attempting to battle my way free from the half-Nelson hold of carbohydrates. All it takes is one slip-up, one day of stress, one moment of weakness...and my body starts this death spiral straight toward the runway. I'm here to report, I've crashed an entire squadron since I started this Fat-A-Thon.



Today wasn't quite an all-out tailspin day, but I wouldn't have won any airshow awards for free-flight either. I started out like a rookie at Indy, full pedal to the metal, and ready to win. I had two eggs with cheese for breakfast, and coffee with sugar-free creamer (bleck). I felt like a million bucks! Protein tames the hunger beast, the carb-craving Cyborg, and the energy vampires - all in a neat little package. Then...dum dum dum dum.... it was lunch time. And there, the story shifts from triumphant tale, to tragic saga.



The tragedy of lunch speaks to those limitations of life-in-the-real-world that we discussed previously. In the perfect diet-vaccuum of RealityTV or Hollywood Hottie, I would have a house full of healthy, vegetable/protein food choices. In the time and finacial limitations of my world, I found myself staring blankly at carbo-land. Sure, sure, I had planned on having broccoli for lunch. Then I actually saw and smelled the broccoli - and decided that botulism didn't sound too appealing. This left me hungry and desperate, very bad bedfellows for a dieting diva.



Long story long, I caved. I jumped off the deep end of the carb train - right into a vat of tater tots. They were there. They were easy. They were sooooooo goooood.......... Rat tails and bat farts, I doomed myself. I ate the wonder taters, I got sleepy. Damn blood sugar.



Having red-baroned my own bi-plane for the day, I decided to half-way salvage dinner. I did embrace the can o' tuna dinner entree, but I did so with the help of more than a few savory saltines. So yes, the omega-happy, protein-rich tuna was way high on my "Yes!" list, but the vehicles that delivered it to my hanger...were less than ideal. Better some good than none...at least that's what I thought.



Then tonight, it hit. For the second time this week, I wanted to yack my cosmic "cookies" to the moon. As I sat there, contemplating worshiping at the great white porceline alter, I had myself a mighty epiphany. I felt like this two days ago, a few hours after I had an oh-so-healthy lunch of tuna salad. No woogies in between, no other signs of malaise. Just waiting-to-wretch a few sordid hours post-tuna. Fabulous. Now my stupid body has gone and decided to hate something that's actually good for me.



Told you. I'm beginning to hold some contempt for my personal vessel. I'm beginning to hate my body for reasons entirely unrelated to the amount of pudge I own. I think I may have a problem here with person-to-pudge-PR. I need to do a better job at selling myself to me or there could be a full-scale revolt. That might be difficult to mediate...



I suppose I could eat a case or two of Hershey bars, and hope that by the time I come out of the sugar coma, the warring factions will have reached a peace treaty.



Nah, my luck they'd wait for me to arrive, and promptly order lunch.



- Alicia Hall - losing weight, and my mind, to raise awareness of pediatric cancer

http://www.crazycancermom.com/



Please feel free to email me at alicia@crazycancermom.com or comment here - all are welcome!

October 23, 2007

Rat crap and bat farts. The date just jumped up and bit my not-shrunken-enough-for-my-liking bummage. I expected to be approaching feminine and sultry by now - not holding at fat and sassy. Crap on stress and comfort foods!

Well, c'mon. I suppose its not entirely fair to blame my bulge on the stress. After all, the stress didn't bend my elbow, or use the jaws of life to pry my pathetically skinny lips open. (oh yeah, I do have one ridiculously skinny thing - my upper lip. For real, if I dare to smile, the darn thing utterly disappears! Cryin' shame my rear end doesn't disappear if I shake it...) No, no...I have to lay claim to my lack of forward progress.

Basically, its a darn sight easier to be pudgy! This thin-quest is time-consuming. I now understand how those crazy people can lose so much weight on "Biggest Loser" - they're removed from normal life. No kids to interrupt the exercise regimen, no laundry to do, homework to check, meetings to attend, diapers to be changed, floors/toilets/dishes to be washed. They don't have to shop for/pay for/prepare the healthy food. They don't have to cook/dole out/clean up the not-s0-perfect-diet-food that the rest of the family eats. In essence, those brave souls leave the real world, and suffer (oh so publicly) for a brief period of time in a complete diet vaccuum. That is starting to sound rather Eden-esque to me.

The problem with that show is that real people/real lives don't work like that. Same with the celebrity diet stories. Actress Penelope Fluff-N-Stuff looks amazing in her Designer Dudley Do-Right Dress. After gaining 50 pounds during her pregnancy, she's looking fabulous only 7 weeks after the birth. How does she do it? Well, I'll tell you how. She's got money, nothing but time to exercise, money, a personal trainer to keep her on task, money, a cook to shop for and make perfect meals, money, a nanny to allow her time to work out, money, and no real committments. Ask me how many of those categories I can qualify in? I'll give you a pickle if you can figure it out.

Pickles R Us! You guessed it! Zippo, bupkus, nada, zero de hero. I'm fighting the fat while feeding 4 kids & a he-never-gains-weight-hubby, attending hospital meetings and charity events, chasing a diapered hurricane, fighting medical mayhem with a pre-schooler, and helping two kids go to school online. My kingdom for a diet vaccuum! OK, if I had a kingdom, I might have some of the afore-mentioned money. So...how about, "My right boob for a bit of dieting peace and quiet!" (Hey, boobs are the one thing I have an overwhelming abundance of. I may as well get some use out of them.)

Point is, that show is really beginning to burn my over-sized britches. If they really want to impress me, do a reality show in a real situation. Follow real people, taking care of their families, going to work - and see if you can squeeze healthy living into their worlds, without sacrificing too much of the lives they live. I'm here to report, its not nearly as easy as it sounds. Its not as easy as I'd like/wish/hope for.

Of course, nothing worth having ever is.

Bat farts, this whole self-awareness thing really does bite.

Alicia Hall - losing weight, and my mind, raising awareness of pediatric cancer warriors and their issues - www.crazycancermom.com

I'd love to hear from you! Feel free to comment here, or email me at alicia@crazycancermom.com

October 22, 2007

I'm going to "plagiarize" myself tonight. I belong to an on-line support group for children with A.L.L. (Acute Lymphoblastic Leukemia). Earlier this week, a mom posted about her recent bouts of forgetfulness. Below was my answer to her. Bear with me...

_____________

I think forgetting things is totally normal! I have a theory. I developed it during Avalon's heaviest tx, when I realized I was forgetting stupid things on a daily basis. Of course, there's no science to my theory...but I love the "picture" it gives me.

Here's what I postulate:

There is only so much room in our brains. Sometimes, the brain has to decide to "dump" info - in order to make room for the non-negotiable stuff. Our baby's first smile, our wedding day, the last time we hugged a friend...those are non-negotiables. They have permanent real estate in our minds.

"Negotiables" are things like grocery lists, to-do lists, chores, meetings. Normally, we can juggle the negotiables pretty well. We have a large allotment of space and energy for them.

When cancer "came home", there was a fundamental shift in the percentage of my brain that was given to the two categories . Suddenly, things I may not have paid much attention to before, like how my child's hair smells, how sunlight makes her dance...became non-negotiable. I began to hang on to details of my children like I never had before. Then, I created an entirely new category..."super-stuck"...the things that I needed to cling to, to keep my child with me. "Super stuck" holds the medical info that is vital to her survival: medicine info, side effects, warning signs...anything medical that absolutely, cannot be forgotten.

The inherent problem is simple. When I expanded "Non-negotiables" and then added "Super-stuck" - it reduced the amount of room/energy available for "Negotiables". Sometimes, things just fall right out my ears. There's no real estate left.

I suppose, at some point, "Negotiables" will reclaim some territory. Once you're OT, you don't have to remember med schedules anymore. Far enough OT, and you reduce the doctor's appts you have to remember. Eventually,"Negotiables" will be able to have some more of my time and energy. For now, I don't miss them.

The good news is, my ability to care about "losing" "Negotiables" - also fell out of my ears. I simply don't have the mental space to give a fig when I forget something. I suppose there is an inherent beauty to this plan.
-----------------------------

I have a fair reason to "steal" from myself this evening. First, I'm stinkin' sleepy - and probably not terribly witty or entertaining at the moment. Second - this theory is infinitely applicable in my life right now. As Avalon's medical needs have once again stepped forward, they've run squarely into her "social calendar", my other daughters' school schedules, and my own ridiculous list of committments.

Over the last few weeks, I've forgotten more than I've remembered! I can and have remembered every intimate detail of Avalon's medical issues. I've remembered every symptom, vital reading, doctor's statement. I have, however, forgotten nearly everything else. I've forgotten meetings, school assignments, birthday plans, this whole blog. How nutty is that?

Have I forgotten the diet? Hmmm, yes and no. I remember I'm supposed to be dieting - but can't manage to remember to get to the store to get the healthy stuff I need. Basically, I think that in light of the recent stress...my brain has opted to take a mini vacation. My non-essential thoughts didn't fall out of my head...they opted for a bus to Vancouver instead.

Time to re-group, re-focus, and re-energize. This is a whole new week. I've cancelled a few non-essential commitments, and am attempting to re-direct my meandering mind. Tomorrow, I start anew. No more cheating in the name of stress, no more caving to the easy food rather than the more difficult healthy choice.

Ahhh...self awareness. Sometimes, it just sucks.

The "Come-Back" kid, Alicia Hall - losing weight, and my mind, raising awareness for cancer kids www.crazycancermom.com

October 16 - part 2

OK, so you want to laugh? Fine, fine...I know my place in the world. Suffer humiliation for the greater good.

Well, before hell broke loose and our world was rotated backward...I had been having a good diet week. Saturday was our son's 1st birthday! Short man turned a whopping one year old. Wahoo! Bonus - I finally broke - 15 pounds. Double wahoo! My mother ever-so-lovingly lied her pantaloons off - and told me she could see a difference in my mid-section. Crazy old woman - but I love her for fudging. Truth is, I still can't fasten my "fat pants", and its royally burning my buns.

As I said, that -15 was before the apocalyptic weekend of torment. Saturday pre-party, I was great - didn't have time to eat. During the party, no problem. I only ate a salad (no spaghetti) and a few small pieces of french bread. Not perfect - but not nearly as horrible as I would have liked. Sat evening - diet was still in tact, I was at the hospital, no decadent food available.

Sunday dawned OK (except for the total lack of sleep...), there wasn't any food to be had. My sister (the bad-hair babe) had gone to the ER with Avalon and I, and spent the night on the spa-rific pull-out hospital torture device next to Avalon's bed. As starvation and caffeine-deprivation threatened to paralyze she and I, she offered to go forth and hunt and gather some rations. Of course, we would pick the one hour a day that the cafeteria is closed! Being resourceful, super-aunt/sister managed to scavenge things from a refridgerator unit to ensure our survival. She choked down a turkey sandwich wanna-be, and found a wonderful chef salad for me. (and coffee...a big, beautiful cup of coffee!) Again, not such bad fare for a dieter.

As Sunday wore on, I wore down. By the time hubby and I had our "changing of the guard", my resolve, my heart, my everything was completely trampled/shot/totally stick-a-fork-in-me done. I came home, put the kids in bed, and ate like it was my job. As I told a friend on Monday, I didn't fall off the diet wagon, I held my nose and jumped head-first into the deep end. Ask me if I care.

Did I know I was eating out of frustration? Fear? Anger? No sh#@ Sherlock! It certainly wasn't for the pure enjoyment of the food! I don't even like cake. Luckily, we'd had a birthday swaree...so I had a ready supply of super-sweet goo to stick my emotions to the moon. I ate, I rested, I ate some more, I fretted, I ate...you get the picture. What you may not get...is the fact that I really don't care! I don't mind one little tiny bit if I gained back 5 pounds. I had to survive that night, and my old friend - sugary, starchy, carb-o-rific pile of calories got me through. Oh well.

I'm sure the thin among you, or some shrink, or the registered dietician divas of the world would have a list of alternative emotional boosts ready and waiting for me. When I'm more highly evolved - I might consider some of them. For now, I'm still new at this Healthy Living game, and I still embrace the notion of "comfort foods". Am I comfortable with the size of my pants? Nope. But I'm not terribly comfy with my daughter's medical life either. Apparantly, one will have to take a little longer to shrink - while I learn to cope with the other.

Another stinking lesson learned. The universe will not bend to my will and leave my family alone long enough for me to become a super-model. How dare it?! I mean, seriously, if Publisher's Clearinghouse would knock on my door, the Fairy of Perfect Health would sprinkle dust over my kids, and everyone who drives while talking on a cell-phone would suddenly lose their car keys...I'd be a size 6 in a month. No stress = no pigging out. Seems simple enough.

Until such time as I can alter the laws of physics and reality, I suppose I'm stuck with stress. Guess I'd better get a bit more adept at dealing with it. It appears, the stars are rather fond of tossing it our direction.

Maybe I can burn a calorie or two if I can learn to lob it back...

Alicia Hall - losing weight, and my mind, raising awareness of Childhood Cancer http://www.crazycancermom.com/

You're always welcome here! Thanks for joining me!