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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9 thoughts on “How to respond when you know things are not OK

  1. Thank you for this. As the wife of a special needs almost 40 year old, the same holds true. “Person first, diagnosis second.”
    I can’t even imagine the difference of what it would be like if it were my child rather than my husband.

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  2. Excellent post. I would add that checking in regularly (weekly etc) is very helpful.
    Call every Thursday or do lunch or dinner or drinks or just something on a regular basis that says “You are not forgotten and by my checking in I am acknowledging it is shitty even if I don’t say it”.

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  3. Thanks, Kari. I appreciate the reminder and your perspective.
    “Child first, diagnosis second” is what I’m going to start repeating to myself when I’m in the middle of a situation with my special needs kid and want to run away screaming.
    One more thing to add for others, just because you don’t see a disability doesn’t mean the child and the parents aren’t going through shit. If we say there is a disability and it’s shitty, believe it.

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  4. This is brilliant, Kari. Can I share it on FB? Will you consider turning it into an op ed for a major newspaper? This message needs to be spread everywhere.
    Inez

    Like

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