New Diagnoses and Grief

Recently, my kiddo’s picked up a fair number of new diagnoses. Three were not surprises, one was. Sort of.

Well, ok. Two were things his doctors had already penciled in, but we needed a certain number of lab results for final confirmation and everyone would have been really surprised if the labs didn’t bear out those diagnoses. I’ve already dealt with those things, back when we first penciled them in.

One was a thing that most people who work with Teddy have suggested, enough times over the years that, though I wanted the answer to be “no,” I wasn’t at all surprised that the answer was “yes.”

The last one was a thing I asked about, fully expecting the answer to be “no, it’s just from these old things.” The answer was “yes, and extremely so.”

That’s the one that threw me.

And I’m full on going through the five stages of grief over this.

And it’s ok.

I think, too many times, special needs and/or medical needs parents feel like the process we go through when we get a new diagnosis is weird or unacceptable or weak. But it isn’t.

It’s grief.

We get to grieve over this stuff. Every new diagnosis, even if expected, even if we cognitively recognize that NOTHING about our child has changed just because there’s a new word on the list of diagnoses, requires some mental adjusting. That mental adjusting is grief.


The first thing I did was DENIAL. I was sad but kind of ignored it the rest of the day, and the whole next day. I danced around the edges a bit. Asked for resources, joined some groups. But I didn’t type the word into Google. I didn’t check the library for resources. I didn’t follow up on any of the recommendations. I just kind of ignored it.

Next? ANGER. I was mad. Not mad because of the diagnoses. Not mad at him. Mad at unfairness. For the love of all things holy, the child has so much to deal with, why does he have to ALSO deal with MORE THINGS? Can’t this one thing just be easy? Not even easy, can’t it just be the same level of hard we were already expecting?

I think I skipped BARGAINING, unless the “can we seriously NOT?” questioning counts.

But I did not skip DEPRESSION. Not, certainly, the can’t-get-out-of-bed, life-isnt-worth-going-on type of depression, no. But the I-don’t-want-to-do-anything, permanent-wrinkles-in-my-forehead, why-is-it-so-much-effort-to-feed-myself depression. Yep. Had that.

And I’m going to pause here again to say that it’s OK. That was ok. That was NORMAL.

Parents – we need to be kinder to ourselves. The world certainly is not. I can hear it already, dear readers. Some of you saying things like “my goodness, woman, put on your big girl panties, it’s just a new diagnosis. It isn’t even life threatening! What a whiner! What a weakling! Life isn’t about what happens to you, it’s about how you react to what happens, or whatever that meme says. What a wuss!!” This is how (some of) the world responds to this VERY NATURAL process of grief. Even in people who’ve experienced the death of a loved one, but ESPECIALLY in people who are grieving the loss of something less tangible. The world won’t be gentle on you.

You need to be gentle on yourself.

This process is normal! Grief after a new diagnosis is normal. (Not having grief after a new diagnosis is also normal – I certainly haven’t grieved every new thing.)

Give yourself this. Don’t beat yourself up. Don’t necessarily expect lots of empathy from others, but give yourself empathy.

Eventually, of course, we move on to ACCEPTANCE. I’m not there yet with this one, but I’ve certainly gone through this process enough times to know it’ll happen eventually. Want to get there faster? Let yourself experience the other stages if you need to. Let yourself be in denial. Let yourself be angry. Let yourself be depressed. Let yourself make bargains with God, the Universe, or whomever you’d try to bargain with. (I’m halfway through some ancient Roman literature, so I’m imagining talking to Jove or Neptune here.) Let yourself go through the steps that you need to take to get to acceptance.

You’re not going to need to experience this process every time, with every new thing. Sometimes you can skip right to acceptance and move on. But sometimes you can’t. Sometimes your psyche or your body says to you, “nope, not this time.” Pay attention. If your body or your spirit is grieving, you need to let it.

And it’s OK.

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