A broken “leeber” and other ramblings

So we were at one of Grant’s ‘ologists recently. More specifically, we had an appointment with his peds neuro (translation: pediatric neurologist).

As ‘ologists go, we like her quite a bit. She is a bit older and very sweet. She is always kind – to me, to Grant and to her staff. I want to give her fashion advice because she dresses likes she’s Amish, but that’s another blog entirely.

Anyhoo, you can’t help notice this doctor’s German accent. And while I hail from the same mother country, it has been awhile since my peeps were there. Like 200 years.

And since then, they’ve been in places like Louisiana, where I was born. And as my husband will tell you, when I get mad or stressed, the N’Orleans just pops right out. Add a little flavor from my hometown in the Southern tippy-tip of Indiana, and this adds up to a helluva language barrier.

So she was asking lots of questions, and I was answering her best I could. We both had to repeat ourselves several times, making the appointment a tad lengthy. (Translation – extra time for Grant to become bored and start getting into shit. And trust me. If there is shit to be gotten into in an exam room, Grant has had ample time to discover it.)

So we are talking about Grant’s attention span (or more specifically, his total lack thereof), when I heard the familiar “puff puffing” of the blood pressure cuff attached to the wall. Double damn, Grant is taking his blood pressure (on his ankle).

Now I am trying to continue the conversation as I attempt to disengage said blood pressure cuff from said ankle (how the hell did he even it get it to stretch that far?!?!).

And then I accidentally pull the whole thing off the wall, after which I trip over a rolling stool trying to catch it before it hits the floor.

So then I compose myself, sort of, and continue the conversation.

Have I noticed any changes in his sleep, she wants to know. I am giving her the low-down when I catch Grant out of the corner of my eye and now he’s got the otoscope. I totally know what’s about to happen … yep, I called it. Straight up his nose.

I am now thinking, dear God why must they have all this medical equipment hanging all over the place in here (I mean other than the obvious). Can’t the doctors wear that shit around their waist like a tool kit?

And just as I am about to take the otoscope away, she mentions something about blood work and Grant’s “leeber.”

Wait, what did she say? His leeber? What about his leeber? Wait, what the hell is a leeber?

And even more importantly, why does she think my kid has something wrong with his?

Now I am sweating because it’s a thousand and eleventy degrees in there, medical equipment is going every which way and up the nose, and there is something wrong with Grant’s leeber and I have no fucking idea what that is.

Things can’t get much worse and then she is right up in his kool-aid measuring his head.

Oh God, why have I never noticed how bad her teeth are? Oh shit, Grant is totally, most certainly going to say something. Because this is the kind of social faux pas that autistic children may occasionally make.

Sure enough, he has now completely focused his attention on her mouth, and he is staring very intently. He starts to point, opens his mouth to ask something, and I begin a violent coughing fit, trying to drown him out.

It’s no use. He doesn’t care if I cough to death. He just wants to know what’s wrong with her teeth.

Finally, the longest appointment in history ends. Turns out, Grant doesn’t have a leeber after all. But he does have a liver.

And it’s just fine, thankyouverymuch.

The bingo bitch is my new BFF

There are a lot of things about myself that I wish I could change. I talk a lot, and loudly at that. I have weird germ-a-phobe quirks like I don’t like to touch my food with my hands, which means I eat things with a fork that other people don’t. Like cookies. Or cheeseburgers. I also have issues with directions, and have spent half my life somewhere lost. Seriously. Half.

But one thing about myself that I am most proud of is I don’t judge other people. Ever. Ever. I credit my mom with having ingrained this quality into me. She is the most open-minded and open-hearted person I know.

So what does all this have to do with anything, and who in the world is the Bingo Bitch? I am getting to that.

I found myself at the laundromat this afternoon after days of cooties had swept through the house, concluding with a stomach thing that was terrible. Yep, all manner of symptoms and illnesses were present and accounted for. And this meant that it was high time to wash all of the bedding including the comforters. So off to the laundromat I went.

Not to digress, but I have to say that I really dig the Laundromat. It’s really warm and cozy in there, and it smells super good with all its Downy April Fresh fabulousness. Plus there are lots of good magazines, and the hum of the dryers is quite relaxing. That and nobody in there asks me to get them a sippy of juice or wipe their bottom when I am in the middle of eating. (And I may very well grab myself a snack because did I mention they have candy machines in there too?)

So anyway, what kind of goes along with being non-judgmental is I tend to think everyone is my next undiscovered BFF, and thus they must be dying for me to strike up a conversation with them.( Actually, maybe this isn’t something to be proud of. When I say it like that it just sounds annoying.)

So there were two gals doing laundry when I arrived. And man, were they doing some laundry. They had almost every machine full. And they were obviously good friends, and seemed to be having a pretty good time, considering (although hell, who knows, maybe they also love the Laundromat). I did wonder if they might think I was a little strange if I were to just strike up a conversation with them, not that it stopped me or anything. But I will admit it crossed my mind. I mean, I was wearing my favorite fluffy pink scarf and flower clip in my hair with leggings and Uggs, and they, well, weren’t wearing that.  If I recall, one of the gals was wearing winter coveralls, kind of like a mechanic would wear, and the other gal had on house shoes and a tee shirt with “Bingo Bitch” on the back of it.

But they were super fabulous. I mean, they did seem a little surprised when I started chatting them up, but well, I am kind of loud and scary tall and all that pink can take some getting used to.

But if I was someone who judged others, and worse, didn’t want to be friends with people who weren’t just like me, I might not have talked to them. That would have been my loss.

Because you know what those two ladies were doing in there on a Saturday afternoon they had off work? They were doing laundry (34 loads) for an elderly couple that lived near them. The wife is overwhelmed caring for her husband who unfortunately is suffering from Alzheimer’s. And this poor wife had purchased a new washer and dryer set, but it was not working. (Which made us wonder if this poor woman wasn’t being taken advantage of because it was still under warranty and she had called the repair service line several times. Totally uncool to take advantage of sweet little old people, and it’s a good thing I had my fabulous new phone with internet because I jumped right on there and got another place she could call. Take that you grouchy meanie who wouldn’t help, you are no match for my new droid. And I got it for just such an occasion.)

So there you have it. A perfect example of why you should look at others not with a critical eye, but as a friend you haven’t made yet. And why you shouldn’t judge others because they don’t look like you do (and if you are almost six feet tall and love to wear pink glasses, scarves and flower pins, that would really narrow it down).

So the next time I need to wash our rugs or bedspreads, I hope I see my new friends at the Laundromat. Because I forgot to ask where she got that cool Bingo Bitch tee. I gotta get me one of those.

In pink, of course.

Message from Holland

Like most moms of a special needs child, I love the poem “Welcome to Holland” by Emily Perl Kingsley. Her words perfectly describe the journey of raising a child with a disability. It likens this experience to getting on a plane destined for your dream vacation in Italy only to find out you ended up in Holland. A little less flashy perhaps, but a place filled with windmills and tulips and wonderful people you may never have met in Italy.

Last I checked, Grant had nine “ologists.” So I figure I am kinda like the mayor of Holland. And I have a lot of neighbors. The CDC estimates that the number of children affected by an autism spectrum disorder alone is 1 in 110.

And as a proud resident of Holland, there is one thing I always focus on when I have a day where it is hard to stay positive. And that is to concentrate on the can and not the can’t.

Because I have noticed that too often when a child is referred to as “special needs,” the focus is almost always on what he can’t do. He can’t speak at an age-appropriate level, he can’t walk as early as other children, or he can’t make eye contact with others. My take is we should instead focus on what they can do. And I am not alone in that feeling. The teachers, therapists and other caregivers that love these amazing kiddos agree.

Because if you open your eyes and your hearts, these kids can change your life. They can make you appreciate the little things like finding an acorn at the playground. In short, they can make you a better person just by knowing them. And when they do, finally, on their own timetable, take that first step or make eye contact, they can make your heart grow three sizes in a second.

Yeah, they can do all that and more. Because here in Holland, that’s just how we roll.

WELCOME TO HOLLAND
by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills … and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy … and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But … if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

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

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!