Got art?

Have you met Grant? He’s sorta famous. It’s true. I mean, not like Jonas Brothers famous, but he does have his own little group of fans. You can’t quite put your finger on his star quality when you meet him, but you know it’s there. And you can’t help but love his art.

But what I think is so special about him is the passion he has for his drawing. At the age of four, he figured out that art was his thing. It makes him happy. He does it every single day, no matter what. It doesn’t matter that he rocks at it. Whatever. He could care less what we all think of it. All that he knows is he simply must draw, just like he must breathe, and just like he must eat goldfish crackers everyday for lunch.

And you can’t help admire how he owns this passion of his. If he wants to draw a lion, that is what he is going to draw. The first child psychologist to evaluate him found this out firsthand. Grant was almost 6, and the psychologist was attempting to find out his IQ so that they could determine what special services he would need in kindergarten. The test was a bit of challenge, as Grant was not really in the mood to be evaluated that day. If I recall, he was much more in the mood for pudding. That said, Jim did the best he could. I believe he ended up assigning an IQ of about 70 to Grant. Which makes him mildly to moderately mentally handicapped.

This number is sorta useless, however. That much was clear when we found him ordering DVDs from Amazon (after enabling one-click checkout). But back to poor Jim. At the case conference that year, he showed us the test results. Poor guy, he couldn’t even get Grant to copy a circle. Of course, then the speech therapist whipped out what could only be described as a landscape that he had done that morning. Jim had the good grace to snicker.

So what the hell is my point here? I do have one, I promise. And that is this. Grant’s lucky. Don’t get me wrong, the whole autism, seizure disorder, leukemia stuff undoubtedly blows. But despite all of those roadblocks, he loves his life. Everyday. And he does what he loves. Everyday. And he gets up in the morning happy. Everyday. And he finds art where the rest of can’t always see it.

In just one afternoon, he drew enough pictures to fill up our living room walls. They were covered with art. Just like his little 10-year-old soul.

So my question is this: where’s your art? I say you learn from the kid with the IQ of 70. Find what makes you happy and scotch tape it all over your soul.

And now, just for fun, a little photo collection.

Friends don’t let friends say stupid shit.

You know the saying, “Friends don’t let friends drive drunk.” This post is along those lines. I have some experience in the “life just pulled the rug out from under me” department, and thus have some knowledge about grief and coping. I am kinda an expert on the stupid shit people say to the people in these situations. As your friend, I am going to let you in on the secrets. So you don’t find yourself saying the aforementioned stupid shit. Here are the highlights:

“God never gives you more on your plate than you can handle.”
I beg to fucking differ. God most certainly does give us more than we THINK we can handle, anyway. The person at the receiving end of this stupid statement likely feels like their plate was hijacked by some dude at discount night at the Golden Corral. And they think you, my friends, are carrying a tiny plastic Dora the Explorer plate with a grape on it. So keep this one to yourself. Lest they try and find the largest plate in their kitchen and bust your ass with it.

Speaking of God, be really careful about religious platitudes.
Faith is deeply personal, and at the best of times, people can struggle with it. For two years, I didn’t talk to God at all, except for the occasional one-sided conversation with lots of four-letter words (from me, not Him, just to clarify). Not two weeks into our family’s cancer journey I met four-year-old Betsy with an inoperable brain tumor. She had wasted away to nearly nothing, which is why her Strawberry Shortcake backpack that held her itty bitty oxygen tank nearly pulled her over. And that same day, some well-meaning moron told me just to pray for Grant because God works in mysterious ways. Really? I am pretty sure I mumbled “fuck off” under my breath and walked away. Even an army of the faithful couldn’t have helped me find Him in Betsy’s Strawberry Shortcake backpack that day.

Speaking of faith …
Struggling to know God in times of grief makes you human. He doesn’t judge, so you shouldn’t either. I found my way back. And I believe that faith isn’t supposed to be easy. If it was, wouldn’t everybody have it?

“I know what you are going through.”
Nope, it is doubtful you have a fucking clue. And that’s okay. If your friend lost their spouse, maybe you can’t relate exactly to this because you haven’t. But what you can do is love them and listen. That is what they need you to do.

Not saying anything at all.
This is way worse than saying stupid shit. People accept that when you say stupid shit, you mean well. And they love you for trying. But not acknowledging their grief is lame. It belittles their feelings. Makes them feel their grief isn’t important. And the people in this situation think that you, if you choose to take this approach, are the one uncomfortable with it. So try this instead, “This sucks and I am so sorry. I love you, and let me know when you need someone to talk to.” Just say that. And then hug them. And walk away before you start nervously spouting stupid shit. Which is exactly what I did at a funeral for a little boy named Gabe that lost his battle with leukemia. I tried so hard to say the right things to his mom, my friend Michelle, that I blabbed all kinds of nonsensical shit that wasn’t helpful at all. And then I cried so hard I dry-heaved in the church’s bathroom. Not one of my best moments. I could have used a “stupid shit” intervention myself, so be grateful I am giving you this one for free.

Stuck in the middle with you

Dear Avery,

As a parent, I am totally not supposed to admit this. But of you three kiddos, my thoughts are with you the most. There you are, stuck right in the middle of Grant and Lily. Being a middle child already has its own challenges. But you are between Grant, the autistic artist whose medical record reads like an episode of House, and Lily, well … you’ve met her. Nobody that bossy can grow up to be anything but president. Plus, she’s much younger and the only girl. (Although, she didn’t have the warmest welcome from Grant. Remember how he was convinced we were bringing a baby pig home from the hospital? He was totally disappointed. In hindsight, we probably should have specified.)

But I am getting off topic. I want to tell you about my theory. The way I see it, you are in the coolest part of the sibling sandwich. You’re like the peanut butter and jelly between the bread. Which actually describes you perfectly. Kinda nutty but really sweet.

I have worried constantly that you might not get the attention you need and deserve. I hold each and every one of your successes in my heart, because they help me realize that you are growing up to be an incredible person. In spite of all. And that maybe you won’t need years of therapy.

For a few years, you pretty much lived at Riley with Grant and me. When you were three, you asked me why you had so much hair. You had noticed that was the exception around there, not the rule. You would spread your Thomas trains all over the floor during chemo and we made you a blanket nest when Grant was inpatient. You used an IV pole as a skateboard. God bless those nurses. 

Daddy and I tried to keep things as normal for you as possible. But I think our best was pretty sucky. And it still included way too much time at a hospital. I feel like you’ve had to grow up too fast. Sometimes we need your help with Grant and Lily, and that can’t always be fair to you. Because even though you are technically not the big brother, you really are in so many ways. And you do it beautifully. I can already see that you will always protect your baby sister and stand up for Grant when he needs it. And he will.

I am so proud of you, dude. You are going to be an amazing man. And that success will be all yours, but I will borrow that one too. And I will hold it close.

I know you feel sometimes like you are stuck in the middle. But I promise I will always be right there with you. And if you need therapy after all, I will totally go with you. Maybe we’ll get a two-for-one deal.

Love,
Mom xoxo

“Don’t worry ma’am, I’m going in …”

Two important things to know to understand my blog. Well, at least this post anyway. (1) Grant is completely obsessed with his Fisher-Price camera, and has had one by his side day and night since 2004. The blue one with the wide red button. Which they do not make the same way anymore, by the way. In 2008 they replaced the button with a smaller one that he can’t push very easily. Still waiting from a response from Fisher-Price from my tearful emails to their customer service. And when this one bites the dust, I am totally screwed. I found it by the grace of God covered in dust pushed to the back of a Walmart shelf when his last one kicked it. My plan is to canvas ebay and hope for the best. Anyway, I digress. (2) We go to the zoo a lot. We have a membership, and pretty much know and love every nook and cranny of the Indianapolis Zoo. You could call us zoo groupies. In short, the zoo is Grant’s crack.

So, me and kids got up early this morning and went to this magical haven for all things animals. Mike had worked super late, so we left him sleeping and headed out to be there when they opened. Yes, we open the zoo a lot. Because we are cool like that.

All is going well, and we are making the rounds. After a while we head into the desert exhibit. Now, I normally am not a big fan. It smells kind of funny, and it is terribly hot in there. But, it wasn’t very crowded and the beautiful 60 degree-day made it bearable. So in we went.

Grant was occupying himself taking pictures of some huge tortoise, so Lily, Avery and I wandered just a bit ahead to peer at the meerkats for a bit. That’s when all hell broke loose.

You probably heard his screeches from wherever it was you were this morning. Because they were loud. Very loud. It seems he accidentally dropped his camera, which somehow bounced off the tortoise and into the exhibit. If there had been a fan in there, the shit would have been flying off of it.

So I went running, Ave and Lils on my heels. Sure enough, there was his camera, down below under some rocks. Holy balls, this was no kinds of good.

There were maybe 20 people in the whole desert area, and none of them were moving. They were transfixed by the scene, looks of horror and pity on their faces. Surely they didn’t know the importance of the camera, but Grant’s horrific wails were a pretty good clue.

I thought to myself, “You gotta go get it. I mean, suck it up, you are super mom. Climb your ass in there and get the camera. And hope we don’t get escorted out of here.”

But here’s the thing. Aren’t there, like, snakes and shit in the desert? I am frantically trying to read what is in this enclosure because if there are snakes I am going to have a heart attack. And there isn’t a damn zoo person to be found. I know this because at least 10 of our 20 fellow zoo goers are trying to find one for us.

It appears to only house some iguanas along with this big tortoise, so I hoist my leg up to climb over into the enclosure. Then Grant becomes more hysterical. God love him, did he think the giant tortoise was going to eat me? I will always remember that for at least a second, he valued me over his camera. Or maybe he was just afraid the tortoise would take me out before I rescued the camera.

That’s when this stranger, a huge dude in a plaid shirt, approached me. He calmly laid his hand on my shoulder and said, “Don’t worry ma’am, I’m going in.” I could have kissed him. But the woman with him looked like she might have taken it the wrong way and kicked my ass. So I didn’t.

But right as he was about to climb in, a zoo worker came running in. She was talking into her walkie talkie, and clearly, this was a zoo emergency. She went right in there and got the camera. Grant grabbed it to his chest, clutching on for dear life.

For that shining moment, there was rejoicing all over the desert.

How the crap sandwich came to be

I have discovered that with the exception of beer, humor is the world’s best coping mechanism.

That’s it. That’s pretty much the basis for my blog. My friends have been on me for years to write down my stories and turn them into a book. Clearly, unless I can figure out how not to sleep, that isn’t going to happen. So we are going to try it this way. Because it’s true, I do have a lot to say.

Let’s start my very first blog post with the name. I should say that I don’t really think my life is a crap sandwich. On the contrary, I love my life. It makes me wonder sometimes why I am not medicated, but yet I love it all the same. But a wise cancer mom once used the term “crap sandwich” to describe pediatric cancer. And I adopted it. Because I love it. And well, it’s funny, damn it.

So what will I write about on my blog? Most of the posts will be rambling of a stressed-out mom who has a little boy with more diagnoses than fingers. Or pretty close. I won’t go into Grant’s medical history with too much detail, just know that the only special needs summer camp he doesn’t qualify to go to (and there are like 60), is the one for craniofacial abnormalities.

But I will also write about a bunch of other crap you may not care about, but perhaps it might make you feel a little better about your own life. Regardless, this is my story, and I am sticking to it.

Also, there might be a few other moms out there that this could help. Like Jill, a brand-new cancer mom I met on Tuesday during Grant’s immunology visit at Riley. Her little one, Vera, is just starting her leukemia treatment. I am so blessed to have a child that is cancer-free, but I will never forget what it feels like to be Jill. And after talking with her for a long time, I actually made her laugh. Twice. It might have been the first time since Vera was diagnosed. And that was my best accomplishment in a long time.

Thanks for reading!