How to respond when you know things are not OK

This is an answer to a question you haven't asked me. But one day you might, so I'm answering it now. It's a question that came up on a list serv I belong to, and the more I think about it, the more important I think it is to talk about.

What do you do when shitty things happen to someone you know? And by "shitty" I mean their child being born early, becoming gravely ill, being born with a disability, diagnosed as special needs, maybe all of those things at once. What do you say? How do you react?

CAVEAT: My reaction might not be the same as everyone's, so take all of this for what it is: a reasonably crazy been-there-done-that mama trying to help others who mean well.

Sometimes things happen to people, and those things are shitty. You know they're shitty, the person it's happening to obviously knows it's shitty, but there's an uncomfortable divide: how do you acknowledge to your friend/acquaintence that you know things are shitty and you're sorry and you wish things were OK – but do it without accidentally making everything worse?

Complicated.

One of these shitty things that can happen to a person is having a sick kid. That might make your hackles stand up, to hear me say it's shitty, when usually you hear about "blessings in disguise" and "God's will" and all of that. By saying "having a sick kid can be shitty" I'm not discounting all the blessings in disguise and whatnot, what I'm saying is that it's also OK to acknowledge that when your child is chronically ill, or newly dignosed with special needs, or whatever, it's OK to think, "Man, this is pretty damn shitty."

But do you want to hear other people tell you that?

Maybe not. Is that hypocritical? I don't think so. I think parents should be allowed to grieve for the expectations they had that will never come to fruition, and they should be given time to chip away at the chrysalis of inevitable denial so they can form new feelings and ideas and expectations (if they even want those things).

If you know someone who's going through a shitty, scary time, I know you want to help her, hug her, tell her how sorry you are.  I also know, though, that chances are she is not ready to hear those things. (Especially if she's swirling in the newness of it all.)

Whether you're talking to a close friend, or a mother of a special needs child whom you only know through other friends, or anyone you come across in daily life, always remember that what you need to see is a child first and a diagnosis second. I know that sounds kind of silly to say, because duh, right? But you would be surprised how many people see that diagnosis first. Especially when it comes to healthcare workers or people who mean well, but don't know what to say, etc.

When Ike-a-saurus was an infant, and trached, one of the hardest things for us was to find good home nurses; nurses who would play with him and engage with him and treat him like a typical baby. When he was 8, 9, 10 months old, we'd have people come in and not even think to put him on the floor to play. They only saw the trach, not the baby attached. It would make me livid.

So my best advice: child first, diagnosis second.

The family will open up to you when they're ready. They are very aware that their child is not typical, even if they are fighting as hard as they can to keep things as typical as possible. Welcoming them into that mindset is OK. It's not encouraging denial, or lying to them. It is validating their feelings: You have a beautiful child. Tubes, wheelchairs, therapy appointments, drool, trachs, all of it and more is there, yes, everyday, right in front of them, and so is the fact that they have a beautiful child. And that you recognize and share with them the beauty and joy and craziness of simply being a parent.

Not, "I heard about everything and I'm so sorry."

Not, "Everything happens for a reason."

Not, "It must be God's will."

Not, "When will he get better?"

Not, "You must be heartbroken."

It's, "You have a beautiful child."

It's, "Look at that spark of mischief in her eyes."

It's, "What is his favorite thing to do?"

It's, "I can tell how much she loves you by how she looks at you."

 

When we were first dealing with everything with Ike, it was all so overwhelming. So, so overwhelming. And I don't just mean what was happening with him, but also the kind of frenzy his birth and illness and the entire situation had created amongst our friends and family and aquaintences. It was a GOOD kind of overwhelming, knowing we had support, and friends and family circling the wagons to help. And it was all so critical to my not going absolutely crazy. I am grateful for the frenzy everyday. Every single fucking day I think at least once about how lucky we are over here to have the community we have.

But…

While everything was going down – me in the hospital, then Ike in the NICU, the PICU, getting the trach, dealing with the trach, the surgeries, everything… I only had it in me to physically be around a handful of people. My brain had hit maximum capacity of shitty.

When these kinds of things are happening to a family, there are so many adjustments to make. There is a grieving process, there is a weariness for having to tell the story again and again, and there is a dread of having to assure people you're going to be OK. Because you don't know if you're going to be OK, you don't know if your child is going to be OK, and you don't want to burden everyone by saying that. 

The point I'm trying to make here is that, when shitty things are happening to someone you know and you want to help – you want to reach out – two of the best things you can do are to recognize a sweet child as a sweet child, and to give the family the gift of space.

"Here is a card, and dinner, and now I will let you be."

Check in often. Wait to see the signs that they're ready to emerge from the newness and scariness and shittiness. Be a warm presence. And always, always remember: child first, diagnosis second.

This was a long post to a question most of you have not asked, but I feel like this is something that can be stored away. One day you'll be faced with a difficult situation and maybe this post can help. Or maybe the person you know will be completely the opposite of everything I've said. That could be true. But as the mama of a kiddo who just kept being slammed with shitty thing after shitty thing, these are the things I needed and craved even if I didn't always know it.

Child first, diagnosis second.

Space to grieve.

Quiet support.

This is what I impart upon you. Do with it what you may.

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I spent part of this morning taking apart our subwoofer, and this is what I found inside:

Photo(27)

1 sock
2 shriveled grapes
1 piece of a corn chip
1 cherry from Hi Ho Cherry-o
3 Jenga blocks
1 popsicle stick
1 very gross and dirty fork
1 tiny dalmation
1 tiny tank
1 purple truck
1 Barbie phone
1 yellow lego

Once I started digging around in there, I thought maybe I'd find a passy-muir valve that Ike used to wear on his trach. It's been lost for years. No need for it now, but it would make a great story. Oh well. All this other crap will have to be entertaining on its own.

YIKES.

I hope the subwoofer feels better now.

O, summer. Why u explode my eyes?

Remember how we were all, oh, Summer… where are you? We miss you and want you to visit! We will cook fresh vegetables every night in your honor! And feed the kids watermelon everyday! And have BBQs with our friends in the lovely evenings!

Yeah, well, I'm over it.

It's fucking hot, you guys. That's not even swearing anymore – it's the actual temperature on Weather.com.

Austin, TX = Fucking Hot.

Like epic, eyeball bursting hot. The kids and I stay inside all day and just run laps around the house while we scream. Periodically, one brave child will go run laps around the backyard, and then come inside, drenched with sweat, and lay comatose on the couch for an hour or so. I can't really complain about that, except for the fearing heat stroke part.

I haven't been posting a lot because there isn't much to report. Shocking, I know! We have an impending dental drama on our hands, where Ike-a-saurus will have to go to the hospital and get knocked out to have several teeth fixed, but I have decided it's too hot to think about, so I've pressed that worry back into the gentle recesses of what's left of my brain.

We did have some excitement last week when MEAN DUMB THEIVES broke into my husband's car and stole his wallet. Actually, they stole his whole work bag. This not only included his wallet, it also contained our brand new salad spinner. Bastards! They managed to rent several movies from Redbox before the bank axed the cards, too. So, wherever you are, MEAN DUMB THEIVES, I hope you are enjoying your movies while you eat expertly spun salads.

Also, I've been having a bit of a writing confidence crisis lately, so that's another reason I haven't been blogging. I don't want to – and can't, really – fill the blog with angsty authorly posts. I just sort of have to suck it up and keep writing. That's hard to do, though, when you just want to whine about your woes to anyone who will listen. So I've been keeping the woes quiet; trying to tuck them back in the quiet recesses of my brain where the dental surgery woes go.

The problem is, this type of thing causes me to have bad dreams, including one wherein I beat the shit out of Anthony Bourdain for no good reason at all. And, in the dream, when I'm done punching him in the face repeatedly, I force his arms around himself into the most arm-breaking self hug ever. Sorry, Anthony. I didn't mean to get you involved. I would offer you an expertly spun salad as an apology, but the MEAN DUMB THEIVES stole the salad spinner.

So that's the summer in a nutshell for you. Fucking hot, impending OR visit, suffering artist bullshit, missing salad spinner, pummeling Anthony Bourdain.

At least it's never dull.

Five Things I’ve Learned From Facebook This Morning:

1. You can win $10,000 AND get to live in a science museum for 30 days. This is the kind of thing I dreamed about when I was a kid. Space camp, and getting trapped in a museum. (nerd alert, I know)

2. Watch out if you're in Sulawesi, a crested black Macaque might steal your camera and take pictures of itself for its twitter avatar.

3. There are still awesome jobs out there.

4. I could fly to NYC and back for super cheap next week. So tempting. I haven't been to New York in one million years. And I could say Hi to my agent and editors. (But I'd have to line up child care, rustle up hotel money, figure out how cabs work, make sure my NY people actually had time to say Hi back, etc.)

5. This lady.

Now it's time for me to wrench the children away from their various television-type devices and force activity on them until they all start screaming and fighting and I give up and let them go back to their television-type devices. That's how I spent a lot of my summers when I was a kid, right? And I turned out JUST FREAKING FINE.

Also, I might make some muffins.

I have no idea why I'm blogging any of this. You don't care if I'm going to make muffins. Though, you will care when I post pictures of the burnt results and the firefighter footprints across the kitchen floor. So get ready for that.

In other news, it is so hot outside, I went out to inspect the gross white trilobites that have taken up residence on my tomato plant and my eyelashes spontansously combusted. And then I got a ticket for violating the burn ban.

No. That did not happen.

But it could.

If I could ever stop writing this blog post.

Which, at this point, seems unlikely.

Making our way through the VORTEX OF BIRTHDAYS

The wee one turned 9 (NINE!) at the end of May. And now, just two days ago the wee-er one turned 5. I am going to have to create new nicknames for them because now they are huge and giant and full of ideas and plans to take over the world.

The wee-er one is quite enamored with being five, I can tell you that. She's like the Chuck Norris of little girls (or, I guess, she could be The Most Interesting Five-Year-Old In The World). This morning, she said, "I put more blue paint in this yellow and it's going to make extra green – [here she gives me a very serious, knowing look] – because I'm five." And then she said, "The paint smells worse the more I smell it…. [knowing look] Because I'm five."

"It sure is great how I can reach the applesauce in the fridge…. [knowing look] because I'm five!"

"I'm lucky to be so tall. [knowing look] Now that I'm five.

I have to get her a big mustache and make a video of this. Seriously.

The wee one is less enamored with being nine because it means he is "almost ten and that means I have to pay for things by myself and do more chores." Yes, but it also means he can stay up later and sleep later and give me good suggestions for new books to read. So being nine isn't all THAT bad.

Next up, Ike-saurus will be – wait for it – three. No really. He'll be three at the end of August.

Clearly, someone has hit the fastforward button. Or, as Ike-a-saurus would say, "Holy crap! Mine memote is on fast!"

Indeed. Mine memote is definitely on fast. Maybe the wee-er one grabbed it and it short-circuited from the mere touch of her energetic fingers – [knowing look] because she is five.