Refections & Ramblings: Volume Four

[I’m still working through my formatting, but this is how I think I’ll do if from now on.]

I.

I’ve been processing a bit more about Micah.

Emotions are weird. We don’t talk about them much, well, at least rarely in productive ways. This may be especially true for many men. In our culture, talking about emotions causes people to be perceived as weak. But really, it’s simply because it’s a vulnerable thing to talk about. We are exposing ourselves. And we aren’t perfect people who have everything figured out. There’s tremendous pressure to always be focused on the good things. To always smile. To always act like everything is ok, or soon will be. Even if things are not ok.

If someone says they are sad or overwhelmed, that’s a vulnerable thing to say. I wish it weren’t that way. But it’s the reality. And oftentimes, the person hearing this information feels awkward or uncomfortable themselves. We are just so used to hearing people say that they are ok that when someone says they aren’t doing well, we don’t really know what to do or say in response.

I have felt that pressure with the news of Micah having Kabuki Syndrome.

I will say, though, that I do have a deep sense of relief thanks to having some concrete information. I’ve said that already in other posts, but it’s true. The news has been validating for me, and a that’s where the relief comes from.

There is no relief that comes from knowing that my son has a genetic syndrome, however. That sucks. Period. At this point in time we have no idea what kind of possible health issues he may have or may have in the future. We just have no idea whatsoever. He can’t speak more than one word at a time for the most part. And when he does speak, you can tell it’s a real struggle for him. He often slurs his words pretty dramatically, making it hard for him to communicate with us.

And that’s hard. Sometime very hard.

Part of the issue with all of this is that even as someone who really values putting words to how I am feeling, I’m at a loss for words overall. And yes I see the irony in that statement after what I just wrote about Micah.

II.

Feeling validated is an empowering thing. It makes me feel good. But, at the same time when I think about it a bit more, feeling validated because my thoughts about Micah potentially having a genetic disorder or apraxia of speech ending up being correct is not really a good feeling. Not satisfying. Not something to celebrate.

Many interactions I’ve had over the last year and a half or so with other adults about Micah have often been very hard.

If I were to voice some concerns about Micah, people were often very quick to reassure me that surely nothing was wrong with Micah.

“Oh, I’m sure he’ll be just fine.”

Not helpful.

If people didn’t directly say that he’d be fine, they often came off as dismissive of my thoughts about Micah. And that is just as frustrating to me. They’d point out his curiosity or his cleverness as ways of deflecting my concerns. They’d basically be implying that my concerns were invalid because of those personality traits.

Not helpful.

Someone even told me that they had a friend who would be able to get Micah talking in no time if I were to just let them be with Micah for a couple weeks.

This was the most hurtful of all the comments or attitudes presented to me. It assumed that Sarah and I were not doing the tasks and activities and training to help him to speak. Never mind the weekly visits from the speech therapist we had coming to our apartment to work with Micah.

Not helpful. In fact, incredibly hurtful. I’ve held onto that conversation for far too long.

People say the darnedest things to parents. I think most parents or soon-t0-be parents are well aware of this phenomenon. Unsolicited advice or judgments.

All. The. Time.

III.

But you know what? These people, the ones who say these things, most of the time have good intentions in mind. They aren’t saying these things to be rude or obnoxious or hurtful. Not usually. They are just trying to make me feel better. And sometimes, it really is the thought that counts.

Like when someone tells Sarah or me that we are the “best parents ever.”

Uhh….no. No, we’re not. You don’t really believe that. We don’t believe that. Because it’s simply not true.

Or when someone says that it doesn’t matter that Micah has Kabuki Syndrome because he is still perfect.

I personally don’t find that helpful. I brought it up with Sarah the other day, and she said she does view our children as perfect. So she likes to hear that. But for me, I don’t think it does me or my children any favors to think that they are perfect.

Guess what? Micah isn’t perfect. And neither is Ezra.

And that’s ok. That’s just the reality of the world we live in. Now let’s address the reality of that fact appropriately. It doesn’t have to be just a big downer.

We are born to struggle. That’s just the reality of this life. It ain’t easy. And we all know that. So why do we act like we’ve got everything in life figured out when really, a lot of us are just trying to figure things out on the fly. Trying to simply keep our heads above water. To do the best that we can for our children and ourselves.

If you were to ask me how things were going and I responded,

“It’s pretty tough right now. Sarah and I are barely staying afloat at the moment. We feel like the world around us is caving in. Things are a bit overwhelming for us emotionally, and it’s undercutting our interactions with each other and with our children.”

How would you respond?

What if I said,

“We’re doing ok. Life is definitely busy, though! But we are blessed. That’s for sure. But we’re pressing on!”

What if I said,

“We’re doing pretty good. How are you doing?”

IV.

My point isn’t to shame anyone for things they’ve said to me or to other parents in the past.

My point is that there is a reason why I felt validated when Micah got his diagnosis. I thought Micah might have a genetic disorder, and the world around me for the most part seemed too uncomfortable to actually acknowledge that possibility. Or to just hear me out.

I have a few very close friends who walked with me through this the whole journey. So I wasn’t alone. I can never say that. I am so incredibly blessed to have an understanding and empathetic wife, and truly amazing and patient friends who have tried to process this with me in real ways.

But that is why I feel validated. And that is where I get my sense of relief from.

V.

That relief has swept over me in ways I could not have anticipated. Sarah told me a couple days ago that I just seem happier. I seem more pleasant. I am less testy. I am kinder.

Who knew? Man. Emotions are complicated and strange. They affect us deeply, and they touch every aspect of our lives. We don’t do ourselves any favors by ignoring them or trying to suppress them. They find ways of popping up on their own. And usually times and in ways that you don’t like.

VI.

That reminds me of a TED Radio Hour episode that I listened to back in November about depression and emotions. One of the speakers made the suggestion that we change how we talk about our emotional state, and most specifically depression.

We talk so much about physical health. And we talk about when we catch a cold randomly, or we get sick for a while.

Why don’t we do that with our emotional health?

It’s not like we wake up every morning feeling exactly the same way. We wake up in all sorts of different moods throughout a week or a month. Sometimes happy and cheerful. Sometimes (or maybe usually) groggy and grumpy.

Have you ever just felt down in the dumps for a day or so? No real explanation as to why – at least that you can think of or want to admit?

Maybe you caught an emotional cold. A short bout of depression.

Maybe something triggered you and you feel anxious or overwhelmed. And then when you interact with another person you are expected to be just fine. As if those sorts of emotions don’t just pop up unexpectedly.

Maybe you caught an emotional flu?

We believe it is important to pay attention to our physical hygiene. Why not our emotional hygiene. We bathe and we brush our teeth every day (for the most part). Why don’t we do the emotional equivalent of those things?

The TED Radio Hour episode about this topic was very interesting, and I highly recommend it if you’re interested.

VII.

Ok. That’s enough talk about emotions for today.

Let’s bring some levity to this post. So let me ask you this:

If you happened to find yourself in a bar fight, which presidential candidate would you want on your side? You could only have one? Who would you want to fight for you?

Maybe this list of the presidential candidates ranked by their usefulness in a bar fight will help you.

VII.

Happy Birthday, David Lynch. Totally looking forward to early 2017 being here so that I can watch the new Twin Peaks reboot.

Now time for some cherry pie and a damn fine cup of coffee to celebrate.