The Five Stages of Grief: FURY

Fury

Yeah. I know. It’s actually “anger”. You’ll understand.

Let me tell you a story about Monday…

Jed peed in his riding toy. It leaked all over the floor, of course.

Before that, he head butted me in the face making my eye sore and tender.

I decided to eat a little onion and garlic in my lunch, and proved that I’m even more fructose sensitive than I thought. My tummy troubled me the rest of the day.

At lunchtime, Jed didn’t like the stuffed peppers he’d wolfed down at dinner the previous night. In the end I had to make a second lunch for him in order to get him to eat.

All of that is pretty normal for a day in our household, actually. Certainly nothing to get furious about.

Here’s where the fury starts to make sense:

First thing in the morning, Zac had a “clean” diaper. Finally!

When I reported that to Darrel, he insisted we give Zac some Alimentum to re-trial.

Now, I wasn’t quite ready to re-trial the Alimentum. I wanted to wait a day or two to make sure he was REALLY at baseline. Darrel, though, was insistent. He’s watching me nurse Zac up to 19 times per day; sometimes 7 total hours of nursing per day! He’s watching me get more and more tired from the lack of sleep and the interrupted sleep. He’s watching his son get older but not bigger. He’s watching his son desperate to eat something.

So he didn’t want to wait.

And, since all of those are true, factual, and very good points, I went with Darrel’s decision and gave Zac a sippy cup with 8 ounces of Alimentum RTF. 

He was ecstatic! Sucked that cup down in no time flat with a grin on his face the whole time!

80 minutes later, we had a poop. It was…okay looking. I tested it for blood and the test was confusing.

Our stool tests turn bright blue with the presence of blood. Lately, they’ve been sort of a bluish-green. Green sometimes indicates bile in the stool. I don’t know exactly what bluish-green means.

I call it a positive for blood. Darrel calls it a negative. So I write it down as “blood?” when I journal the test results.

This was a bluish-green colored test result.

Hmm.

Not 20 minutes later, another poop.

This one was solid, gelatinous mucous with visible blood. Now, I say “visible blood”, but honestly, most people would have looked at it and seen nothing odd, except for the mucous, of course. But I have lots of practice at looking at these diapers and I spotted the signs of blood.

Still, I tested it.

BRIGHT FREAKING BLUE.

No confusion. Clear as a bell.

BLUE.

BLOOD.

(Bad words bad words bad words bad words)

Still, no fury! I handled it fairly well. No histrionics, no gnashing of teeth, no severe reactions of any sort. Just…”Well, crap.”

Without a formula, I am almost certainly not going to be able to return to work. Without a formula, Zac is going to continue to struggle with weight and growth.

Without a formula, we’re screwed. 

But I just hugged Zac, told Darrel the unfortunate news, and dumped the remaining Alimentum down the sink.

The rest of the day, Zac was Cranky Baby. He didn’t want to nap. Then he really wanted to nap NOW! He wanted to be held. He wanted down. Nothing made him happy for long, and this is a child whose nickname is “Mr. Happy”. Very  out of sorts for him.

By mid-afternoon, he’d started coughing. By late afternoon, he had a runny nose.

Seriously? On top of everything else, he apparently decided to get Jed’s cold – the one Jed himself is finally getting over!

UGH!

Then the bad thing happened. 

I nursed Zac on the couch, as usual, and managed to doze off while doing so. (Did I mention 19 nursings a day? That’s middle of the night, y’all.)

While I was sleeping, Jed went into the office. He left the door wide open behind him.

The cats decided to “leave a present” on the floor for us.

Zac ate the cat poop. Again.

When I woke up, twenty minutes after my last recollection, Zac greeted me with a face covered in cat poop…and I LOST MY FRIGGIN’ MIND.

I went straight past anger, right into FURIOUS.

FURIOUS!

I was absolutely furious at Darrel for pushing us into a trial I wasn’t ready for. (Never mind that he had good reasons for insisting on it, and that if I’d been really uncomfortable I would have refused.)

I was absolutely furious at Jed for going into the office, a direct disobedience since he knows he’s not allowed in there. (Never mind that he’s THREE and Mama fell asleep.)

Worst of all, I was furious at ZAC for so desperately wanting to eat that he’ll eat any-damn-thing-he-can-get. (Never mind that wanting to eat is, you know, normal for human beings and that he’s just a baby that lives his life constantly hungry.)

How sick was my fury? How much more irrational could I have been?

Very sick. And, not much more irrational at all. 

I seriously lost my mind in The Fury. 

Fortunately, I wasn’t furious for long. After about an hour of being so livid I could hardly function, I sent a message to a friend online. After telling the story to her, and hearing her commiserating responses, my fury faded away.

Logic and Love will win out over Fury every time, doncha know?

And logically, there was no reason to be furious at any of the people who attracted my fury. And the people who attracted my fury? Are the people I love most in the world. 

So I issued apologies all around (Darrel didn’t even realize I’d been furious at him until I apologized!), gave lots of hugs, and spent the rest of the evening tottering between Depression and Acceptance.

The 5 stages of grief are valid, but they don’t come in a neat, tidy little line like a “To Do” list that must be checked off. 

No, they hop around and blindside you at inopportune times when you least expect it.

This isn’t a pleasant story to share; it doesn’t make me look very good, after all.

I shared it because, if you’re the parent of a child with any sort of special need that makes you live on the edge – or over the edge – of “normal”, you will likely experience something like this on occasion.

So I wanted to share this to let you know: it’s okay.

It’s not pretty. It’s not nice. But it’s okay.

There’s nothing wrong with occasionally getting FURIOUS at the hand life has dealt you and your children. 

The only thing I did wrong today was to yell at Jed when I was in the midst of my Fury. “In your anger, do not sin”, after all. I’ll work on that. Fortunately, he accepted my apology because, let’s face it, most of the time? I’m a big ol’ lovey-dovey softie with him. This was out of character, and he knew it.

So if you also have a moment that pushes you into The Fury, don’t be mad at yourself when you return to normal. 

But maybe try to leave the house until you’ve calmed down. You know, so you don’t hurt the people you love in the process.

Oh, and Zac? We have the humidifier in the bedroom tonight to help with his cough, and the poor little guy is just flat. out. miserable.

Between the cold and the FPIES reactions he’s suffering with, we’re in for a long few days.

__________

Have you ever experienced The Fury? 

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4 Responses to The Five Stages of Grief: FURY

  1. Tammy Kenny says:

    God Bless you! Although I do not have a child with FPIES, A nephew instead, I do understand this on a different level, having to go through Breast Cancer. I understand and have been in this same feelings of frustration, and have done my best to keep my frustrations away from my family, but unfortunately I have not always been successful. Sometimes when we let it all out like this, we tend to get a little more understanding of what we are going through mentally and physically, if even for a moment, they understand that we have a breaking point, and sometimes we need patience and understanding, a shoulder to cry on or even just a hand to hold. Women/mommies are known for their strength and endurance, because we can handle it all without hesitation, but what the others don’t realize is that we are crying and hurting inside and we just want it to end, to be normal if there is such a thing, and maybe even just need for someone to say it will be ok, I am here with you every step of the way, a little reassurance goes a long way..Hoping that things will get eventually a little easier for you and your family! I appreciate you being open and sharing, most of us hide it away with shame or guilt. You are truly amazing….take care!

    • Carrie says:

      Oh, Tammy. God Bless YOU! You sound amazing; going through Breast Cancer and taking such an interest in your nephews’ struggles. How are you doing?

      I really want to thank you for telling me that you appreciate my being open and sharing. Sometimes it’s scary to put things like this ‘out there’, but I think to myself: I can’t be the only person feeling this way, right? Maybe if I share this, it will help someone else not feel so crazy and alone. So thank you for confirming that for me, and validating my decision to be vulnerable.

      Thanks for sharing your thoughts! Prayers for you and your nephew for 100% healing.

  2. dkaj says:

    Carrie, I am so sorry to hear about all of this. My heart goes out to you and all the other FPIES mom’s and families. If I lived in your area, I would come over and watch your little ones, so you could get some rest. Does your church or any other organization in your area offer any kind of services to help out families with special medical needs. Any family relation or close friends who can give you at least one or two hours between feedings so you can take a nap? That has to be so exhausting. And I’m so sorry the formula failed.

    Have stool tests been run for C-diff or any other type of bacteria on your little one? There is a mom on our FM site who recently found out her daughter has C-diff. The GI doc ran the stool samples for her, and it came back positive. They just started treatments with her, (antibiotics) and haven’t heard the results of that yet. They are still in the middle of it. She’s hoping this help, but probably will make things worse for a while, as antibiotics are a double edged sword sometimes. I’m there right now with my DD after antibiotic for sinus infection. She now has a yeast overgrowth. Ugghh.

    • Carrie says:

      Thanks, Deborah. 🙂

      My parents pitch in where they can, but with the move they’re still trying to get their little farm up and running so I try to “use them” only when absolutely necessary at this point. No sense in over-using my ONLY outside support structure! If there is anything else out there to offer help, I haven’t found it. We’re kind of on our own. 🙁

      Back in January, tests were run on blood and stool and I *believe* C-diff was one of them. All test results came back negative for anything out of sorts. We’re due for follow up appointments, so we’ll see what happens then. Antibiotics are a double edged sword, but I swear Zac was at his best right after his Rocephin shots. I think he has some gut dysbiosis and killing the bad bacteria was so beneficial it didn’t matter that it killed his good bacteria, too.

      This diagnosis is so hard to manage and figure out.

      I’m sorry for your DD’s sinus infection and yeast overgrowth. It’s so tricky when the cure causes more problems, right? Sigh…

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