It's the last day of September

September is Childhood Cancer Awareness Month, about which I was blissfully unaware until this September. Over the past 30 days, I’ve reflected on how my eyes were opened to this fact, and how – sadly, unfortunately – I am now all too aware.

Almost two months ago, I made plans to go spend the evening with my friends Becky and Chandler Moore. We live in the same neighborhood; their kids, Faith and Kady, go to the same school as Sam; and we’ve become very good friends over the past couple of years, having reconnected 15 (ish) years after Chandler and I first met in college. Becky and Chandler have been extremely good friends to us, and have supported us through some pretty shitty times.  We’ve vacationed together, we’ve partied together, and spending an evening unwinding and sharing a glass of wine together is not unusual for us. The game plan that Friday evening was that I would drop off Jack at football, and Sam and I would head over for a while.

I cannot explain the immediate sense that something was wrong. As soon as I knocked on the door, I knew. Maybe it was because the Moores never take that long to answer a knocked door. Maybe it was because the house was too still. Maybe it was because when Chandler opened the door, he seemed stiff and confused. All I knew was that something was off, and Becky confirmed it when she whispered to me, “We’re probably admitting Faith to Phoenix Children’s tonight. She has a lesion on her leg.”

And that’s how I first found out that 11-year old Faith had cancer.

 

I mean, no one immediately KNEW she had cancer, but the tests, scans, biopsies, and doctor visits over the next several days confirmed everyone’s worst fear – that the lesion was a Ewing’s sarcoma, a type of bone cancer that is common in teens and young adults.

Two months later, I still can’t comprehend this reality. I’ve had several family members with cancer –all of them were adults and many of them had known risk factors. But a child’s cancer? MY FRIENDS’ CHILD’S cancer!?!? What kind of cruel, inhumane, cosmic joke is that? In an interview (more on that in a second), Jack said it best when he said, “(Childhood) cancer isn’t something that you think can really happen, until it happens to a friend or a loved one.” In the same interview, Sammy was a little more succinct: “Cancer can really SUCK it. Like a lollipop.”

Our family went into Helper Mode: setting up a meal tree, giving fundraising suggestions, offering to dog sit, house sit, plant sit – you name it. If I’m being entirely honest, “Helper Mode” was and is a selfish response. It was purely a way not to feel so utterly helpless in the midst of the chaos. Not much makes you feel more helpless than going to visit your friends while they sit bedside of their just-out-of-anesthesia child, or watching as they hold her hand as she undergoes a scan to find out if the cancer had spread to her other organs (it hadn’t, thankfully).

My kids, on the other hand, responded much more selflessly. I’m not sure how Jack realized there were financial implications to his friend’s cancer, but he and Sammy started talking about donating their piggy banks to Miss Becky and Mister Chandler. That talk turned into the idea of having a bake sale for Faith, and then after talking with me about it, we thought we’d add lemonade to the corner table that I was envisioning. I imagined that we’d ask a few neighborhood kids who were also friends with Faith to help with signage, and hoped enough of them would bring their quarters to the stand so that my boys would not think their effort was in vain.

 

Community is an incredible thing. We asked those friends for some help, and that help quickly became, “What can we make?” and “How else can we help?” Eventually, we had 6 or 7 families offering to help make baked goods. Word was put out on Facebook, and about 5 days later, the number of volunteer bakers had grown exponentially – and many of those volunteers were strangers who had heard about the bake sale from a friend of a friend of a friend. Because of a journalist friend of mine, the bake sale caught the attention of a local news station (thus, the boys’ news interviews). And the little corner stand that I had hoped would make a few hundred dollars turned into this:

 

And strangely, this amazing act of generosity was when I started getting angry.

I was angry that my friends were scared. I was angry that it took Faith getting sick to see my boys’ selflessness in action.  I was angry that it took this awful thing for me to find out how caring our community was. I was angry that this sweet pre-teen girl has to think about chemo and hospitalizations, instead of softball games and schoolwork.

In short, I was PISSED at cancer.

I continue to be pissed, but watching my friends’ strength (although I don’t know that they would call it that) and positivity in the face of this has inspired me to stop being pissed, and start DOING something.  I’ve taken the time to learn about childhood cancer charities. I’ve slowed down and tried to be more patient with my kids. I’ve met countless new friends who have helped reach out to the Moores. I’ve started treasuring little moments more, and worried about little troubles less.

Faith’s prognosis is very, very good, and she’s going to recover. I hope that next year during Childhood Cancer Awareness Month, Faith will be cancer free and back to enjoying vacations, school, and “normal” kid stuff.

 

In the meantime, if you’d like to follow Faith’s progress, drop her a note, or offer support to her family, check out www.fixfaithsfemur.com.

Now, go hug your kids.

A funny thing happened on the way to the blogosphere...

About three months ago, a friend of mine told me she was going back to work full time, and asked me how I juggle being mom, wife, friend, professional, and human being. Because I'm CLEARLY the person to go to for all such things.

So I started writing a blog-response to her. Three months ago.

A funny thing happened on the way to the blogosphere.

Life happened.

I can't even tell you WHAT happened. I'm sure it was a bunch of nothings and littlethings that melded together into Lifethings. I do know that since I last posted, kids have gotten out of school, we've gone on a couple of camping trips in cooler temps, we've moved (well, that's sort of a BIGthing), and I'm still avoiding avocados. You know the saying, "Life gets away from you"? That's kinda what happened here.

It's not that I have nothing to say lately. (Matt will tell you nothing's further from the truth.) There are so many things I've wanted to post about, and probably still will: Jack's entry into Jr. High. Sam's anxiety over his best friend's moving away. The family's move (albeit, into a neighborhood where we're surrounded by good friends). My battle with this cloud that seems to be hanging over my head lately. (Probably anxiety-related, but who the fuck knows? I haven't had enough time to think about it lately.)

So to answer the original question that this post was supposed to be about - how does one juggle all the roles that's expected of him or her and come out smelling like roses? Damned if I know. I think I'm like most people - I just do the best I know how, and some days that fly-by-the-seat-of-my-pants gameplan actually works. But I do know that I need to continue to fine-tune the art of putting my needs at least on the same plain as everyone else's. If momma ain't happy, ain't nobody happy.

In my efforts to keep everyone else happy, I've let my blogging slide. Blogging gave me a creative outlet, let me share my experiences, and made me feel useful. I've missed it. I've been keeping up with my Facebook page, but it's a little different. I'm able to explore things more in blogging - kind of my own free therapy. So my game plan for the next few months is not to let nothings and littlethings build up and keep me from something I really enjoy. If Lifethings come up, I'd like to talk with you all about them, not push them off to the side and assume I'll get back to them later.

I'm sorry I've been away, but I'm back. And school's starting in a week, so there will be LOTS to discuss, I'm sure.

The Devil's Food (and it ain't chocolate)

The hubs and I are doing a 21-day jumpstart "diet" to get our metabolisms up and running, and to get ready for bikini season. We both are all in, and truth be told we're about 4 months late for the beginning of bikini season (in Arizona, bikini season starts on January 15 and ends on January 14). The jumpstart involves eating very little complex carbs, lots of green and raw veggies, and lean protein. And avocado.

I fucking hate avocado. I DESPISE it. Just looking at it makes me gag. I haven't addressed this in therapy yet, but there is a very real chance I was attacked by a giant avocado as a child. Apparently people feel about avocados much the same way they feel about poodles or modern art - either you love them or you hate them. Let me be perfectly clear. I. Hate. Avocados.

But I'm committed to these next 21 days, and because I'm always telling my kids that you must always at least have a "No thank you bite", I have to walk the walk. So this morning, Matt chose the "best" avocado (sounds a lot like choosing the "best" form of torture to me), cut me a sliver, and chopped it nicely. (If he had mushed it up I would have been out - the texture is already disgusting. I don't need to have it look like a baby ate too much prune juice.)

I asked Matt, "What does it taste like?" He thought about it for a second and said, "I always thought heaven would taste like avocados." Liar.

I cannot emphasize enough how taking that first bite of avocado was like jumping out of an airplane. There was that much anxiety for me. To continue the analogy, eating avocado was like going skydiving - and then realizing, as soon as you jumped out the plane, that you forgot to put your parachute on.

That "fake" gagging thing that Sam does when he's eating something he doesn't want to? Yeah, I think that's legit. I did that. And I laughed at how ridiculous it was. And I took another bite. And gagged again. I got through my whole sliver, but by the end I was holding my nose and swallowing it whole. I have no idea how you avocado-lovers do it. That was the most disgusting thing I've ever done, and I have had a toddler throw up in my mouth before.

Apparently, avocado is some miracle weight-loss food. For me it's because I lost all appetite after eating it. And - shit - I have to do this 20 more times. And the reward for my bravery? A snack of raw cauliflower.

The Question

We were sitting on the couch as a family, watching TV, and out of the blue, Sammy asked:

"Mom and Dad - what does being 'gay' mean?"

I looked at Matt, Matt looked at me, and we both looked at Sam. And Matt oh-so-wisely replied:

"What do you think, Mom?"

Asshole.

My first concern was how he had heard the word used. I needed to make sure he hadn't used it or heard it used as slur, and that he knew that using in such a manner wasn't going to be tolerated in our family. We were safe - Sam had heard it on TV when we were watching Modern Family one night (LOVE that show!), and he wondered what it meant. Fair enough.

Matt and I don't usually dance around tough topics with the boys. We try to talk about things in age-appropriate terms, but we don't avoid the conversation. So we were both on the same page about Sam's question. We were going to answer it in a way that a 7-year old could understand, and we were going to earn some major Awesome Parents points as we did so.

So we explained: "When a person is gay, it means that a man loves a man, or a woman loves a woman." Simple explanation, but honest and to-the-point. Awesome Parents: 1, Uncomfortable Topic: 0.

Sam thought about it for 0.015 seconds and said, "Well I'M a boy and I love daddy and PopPop and Lucas (his BFF). So I'm gay, right?" Aaand...Uncomfortable Topic pulls ahead.

Us:  "No, not exactly, honey. When you're gay you love someone like you want to spend the rest of your life and live with them forever. Like mommy and daddy. THAT kind of love." Oh yeah. That'll do it! Matt and I gave each other a mental high-five.

Sam:  (pensively) "Well, I want to live with Lucas the rest of my life. We're going to be best friends for the rest of our lives, so we can be gay together!" Shit. Increasingly Flustered and Not-So-Awesome Parents: 1, Uncomfortable Topic: 3,142.

Us:  "Sammy, when someone is gay, they romantically love another man or another woman. They want to hug and kiss, like mommy and daddy do. They want to marry each other. It's a different love than how you are with Daddy or PopPop or Lucas. Does that make sense?" Pleasepleasepleaseplease...

Sammy: "OOOOOOH! Okay. Can I have dessert?" YES!!! Awesomest Parents in the Whole Wide World for the WIN!!

Matt was more than happy to get Sammy his dessert, and I think we both breathed a little sigh of relief. And then Sam asked:

"How do gay people make babies?"

Sammy got dessert twice that night.

Dirty little secrets

I have a confession to make: I have SNMIC - Special Needs Mom Inferiority Complex. Right or wrong, I don't consider my boys' special needs to be as severe as other special needs kids', so I feel bad even calling myself a special needs mom.

But the truth is, while Jack and Sam's special needs are different from others', they're no less significant or important.I have NEVER had a special needs mom (or dad) say, Your kids JUST have ADHD or ODD. No one has ever told me My kids' needs are more special than yours. There's a real camaraderie among those of us with special needs kids. Though our challenges may be very different, we speak a similar language. And this became very apparent today when I read an article in the Huffington Post today.


The article shared 6 secrets that special needs moms have. The author never states what her daughter's condition is, and I suspect it's not by accident. She's not comparing her kid(s) to mine. We're on the same page and we have the same secrets. The secrets identified below are hers, but the experiences are mine.

1. Special needs moms are lonely. Word. Not lonely, like no one likes me and I have no friends, but rather like no one understands exactly what we go through. It's extremely isolating when you're in public and your kid is in the middle of an ODD episode and a million sets of judging eyes are staring at you and thanking God their kids don't act like that. Or worse, when some passive aggressive asshole says to someone else (but within your earshot) Geez, if I ever acted like that when I was a kid, my mother wouldn't have stood for that. Special needs moms also need to learn to bite their tongue and not punch people. (And I'm proud to say that in that case, I didn't hit anyone.) It's lonely not to go to (fill in the blank event or location) because you're afraid of what your kid may say or do, and how that will reflect on you. This is the dirty secret of special needs moms, and why we all like each other as much as we do. It's nice not to feel quite so lonely among one another.
2. Special needs moms have to work extra hard to preserve their marriages. I've said it before and I will say it again - God bless our marriage counselor. The stress of the boys' ADHD, defiance, bad grades, poor behavior - it all buried us and the weight was (and sometimes still is) unbearable. We individually felt (and many times, still feel) like awful parents. But until our counselor, we would turn ON one another instead of turning TO one another for support and comfort. She taught us our "I feel" words. I can't overstate the importance of counseling and learning to communicate well with my partner. Marriage is hard work as it is. Add in two kids with varying degrees of ADHD and ODD? I'm shocked I'm still married some days.
3. Special needs moms are not easily offended. I've written about this. It takes A LOT to offend me. A lot of time, I choose to laugh at ridiculous politically incorrect things because I don't have time or energy to get pissed off about it. I'm too busy trying not to punch someone for making some dumbass passive aggressive remark about my poor parenting. (Special needs moms may also need to learn not to hold grudges a little bit better.)
4. Special needs moms worry about their child dying. This is one area that I DO know my kids' situation is not as severe as others'. The boys' physical health is not directly impacted by their conditions. For that, I'm grateful. But sadly, I know many special needs moms who have lost their children, or who live with that constant fear over the possibility. I cannot even imagine. I don't WANT to imagine. But I do worry about how my children have been bullied because of their ADHD, and about their resulting anxiety and depression. All of these things are issues that have been tied to suicide. And that scares the living shit out of me. I will forever fight to teach my kids healthy coping skills, and to value themselves highly, but that fear is always there.
5. Special needs moms are fluent in the transforming body language of touch.  I remember when Sam was about 3, and his rages were often, and they were severe. He would punch, kick, scream, throw things, tear things up, hit himself, hit others. Words were meaningless when he would rage like that. And all I could do was hug him. Sometimes I would have to squeeze so hard that I was afraid I was hurting him. Honestly, sometimes I didn't care if I WAS hurting him. But if I hugged long enough, I would feel his muscles relax, one by one, until he was hugging back. Sam doesn't rage like that anymore, but I can still feel him relax when you hug him long and hard. It changes him. It changes me.
6. Special needs moms know to savor the gift of a child saying "I love you." Part of Sam's ODD is that he doesn't like to show affection unless it's on his terms. He generally won't say "I love you" in response to you - he has to say it to you in his own way, on his own terms. Hearing "I love you" from your kids is always special, but when I hear it from Sam I know it's real and it's because he wants to say it, and not because it's in response to something.

ECON 101

In the last week, both the boys have had the opportunity to earn some money and to show me how well I've taught them the value of a dollar. What I've found is that I'm raising one son who will likely never leave home, and one son who will grow up to become a future sweatshop operator.

Jack has been invited to travel to the UK with a Student Ambassador group, but the total cost is more than I'm willing to front. (I'll admit it - I'm a selfish mommy, and if anyone is paying that much money to go to Europe for three weeks, it's going to be me getting the VIP treatment.) However, I agreed to work with him to figure out how he could earn enough money to pay for the trip. In doing so, I get to be cheap AND teach him a life lesson, all at once.

Jack's been earning money babysitting his brother and has been successful enough doing so that we've agreed that he could continue doing so. We've also agreed to sign him up for a Red Cross Babysitting course so that he could babysit other kids. In talking about how much he thought he could charge for babysitting, I taught him the concept of Market Rate - as in, Mom and Dad don't pay it. I won't share how much we paid him for 4 hours of watching his brother the other night, but I'll tell you that I probably broke a few child labor laws because of how little I forked out. Jack doesn't have enough of the killer instinct yet to use that information to force us to pay more. Instead, he thinks everyone else should pay LESS because we pay less. If only it worked that way, son. If only...

After reasonably estimating how much he could make babysitting over the next year, he asked if he could also make money selling baked goods. Baked goods that *I* baked. Um, no. Okay well, what about mowing lawns? He estimated that he could make $3,000 over the next year mowing lawns. Sounds great, but I wanted to know how he planned on accomplishing that. He wants to charge $10 a pop, and mow only 5 lawns a month. Once I walked him through the math he realized that wasn't a business model he should go with. We're still talking through his game plan - I actually think his lawn-mowing biz could work, but it's obvious he needs to rethink his pricing structure and service model. The things you have to deal with when your mom's an accountant.

Sam, on the other hand, is going to do quite well in the business world someday. A friend of mine owns a reading center, and "hired" Sam to do some scissor work and cut out several hundred flash cards. For his time, she paid him $20. He was very easy to get on board, and once he knew the job was his, he meticulously planned how he was going to cut the cards, how quickly he was going to do it, and what he was going to do with the money.

On the day he set aside as Cutting Day, his neighborhood friends came over to play. He was very excited as he told them what he was going to do, and how important he was because he was HIRED to do this, and how fun and cool it is, and - HEY! Do you want to help me!? I'll pay you 50 cents!! TWO WHOLE QUARTERS!!! And I'll be damned if those 3 little kids didn't jump right on board with that game plan while Sam stood off to the sidelines to supervise. Matt and I put a stop to it right away - we watched it play out until it became clear that Sam was hiring his own personal workforce - but with that one interaction he was salesman, supervisor, investor, and capitalist. I was so proud.

Just one more way my kids show how opposite they are. And that I have about 6 more years to teach Jack how to survive in the big, bad world. I bet his brother would teach him. For a price.

In the eye of the hurricane

It's been a full week since I got smacked upside the head with Jack's ADHD - inattentive type diagnosis, and our family is still struggling with it. Not "struggling" in a "Our entire lives have been a LIE up until now and we're in a tailspin and what do we do!? WHAT DO WE DO!?!?!?!" type of way, but more in a "Huh. Where the fuck did that come from?" type of way. We had finally gotten our feet back under us after surviving the drama surrounding Sam's diagnosis, then Jack's diagnosis came whizzing by and knocked us back on our asses. We weren't really equipped to handle Jack's diagnosis the same way we were equipped for Sam's, and therefore this past week is like going into uncharted territory all over again.

First, the timing of the chain of events that led to Jack's diagnosis CHBB (that's shorthand for "Could Have Been Better". I prefer the phrase ISA, or "It Sucked Ass"). His last-minute appointment was a whirlwind and I was completely under-prepared. Matt wasn't available for emotional support. This appointment was much more condensed than our first appointment with Sam (because the doctor didn't feel the need to walk so slowly through it with us since we had just gone through it with Sam) and therefore didn't include as much hand-holding. I was bombarded with the same information, but for a new kid.

Second, the boys have differing types of ADHD - Sam's is hyperactive/impulsive, and Jack's is inattentive. Their symptoms look EXTREMELY different, although both have wreaked havoc on school and home life. Before Sam, I didn't know exactly what ADHD looked like, but once Sam's behaviors and symptoms started, I knew that ADHD looked like THAT. If Sam was doing it, THAT was what ADHD looked like. Jack looked nothing like that, therefore it couldn't be ADHD. As much as I had read, studied, and learned about ADHD and how it could look for various individuals, I had read it through the lens of a mom with only one child with ADHD. I still haven't made the mental connection between all the reading and studying I've done and my older son.

And because Jack's so different from Sam, the strategies we've been using have to be adjusted for Jack, and in some cases, scrapped altogether. For example, if we were to ever send Jack to the quiet corner to "reset", he'd grab a book and we wouldn't see him until his 16th birthday. (Hmmm...actually I may keep that one on file.)

Another reason this caught us so off guard is that we've been dealing with Jack's "idiosyncrasies" for so long, and until recently it hadn't caused significant upheaval. He was identified as gifted by the school district when he was 8 years old, and gifted children often show many of the same traits as ADHD children. In our minds, this was just that giftedness meeting Jack's growing sense of independence and self - not ADHD. No way, no how. Surprise!

And lastly - Jack isn't responding to his medication as well as Sam did. There are no ill side effects yet (except for a mopey, put-upon disposition and that's more due to his affliction with the dreaded Preteen-ese), but there hasn't been any marked improvement in his classroom behavior. While we knew the first scrip may not be the best scrip, knowing something and KNOWING something looks very different. We were used to a little boy who perked up and became an improved version of himself very quickly. We aren't prepared for an almost-teenager who is still acting like an almost-teenager. We'll address this with his doctor, and we know we'll find the right prescription, but in the meantime it's disappointing (to us and to Jack) that the impact wasn't as fast and furious as what we had hoped for.

Overall, we're dealing. We're okay. As is the case with most unwelcome surprises, the immediate aftermath of Jack's diagnosis overwhelmed us and made the molehill seem like more of a mountain. It certainly wasn't a molehill I was looking forward to climbing, but it still wasn't the Mt. Everest my mind had created. I'm probably cursing myself by saying this, but Jack's diagnosis has been rather anti-climatic - here's hoping it stays that way.