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Thursday, May 11, 2017

Ocean of Love

Our kiddos can be pretty angry. Irritability is the norm, always has been. Our babies were impossible to soothe, everything made them feel on edge. They have never been good sleepers. We walk on egg shells, never knowing what will set off a bout of anger. When the school bus shows up in the afternoon, I know for certain there will be hours of meltdowns ahead. The kids hold all their “stuff” in all day long, and home is their safe place. The place they know they are unconditionally adored. The place they know they can let it all out, the good, the bad, and the really angry, and they will still be loved. 

We have a lot of anger living with us. Sometimes, as my children are falling apart after school, they will say they had a really good day. As they cry and fight, they will tell me they wish they could feel happy, but they can’t and they don’t know why. They will weep and pick fights and say mean things, and in the same breath beg for my help because they don’t know how to calm down. It’s tough being the Mama that everyone needs help from. Especially when you’re not quite sure what the underlying problem is.

Now we have more answers. Now we know it’s not Bipolar Disorder, it’s PANDAS. 

PANDAS is an inflammation of the nervous system, caused by strep. PANDAS has been living with us for many years, hiding in plain sight. PANDAS can cause Bipolar symptoms. Inflammation in the brain can make a poor kiddo feel like raging for no reason. Inflammation can set off a volcano of a reaction, when in reality the trigger was small and innocuous.

Having lived with these types of symptoms since our babies were tiny, we’re used to thinking eight steps ahead, trying to make sure that nothing will set off a rage. But sometimes life happens. Sometimes you can’t always control everything in your child’s environment. Sometimes, especially when you have four kiddos who react the same way to triggers, life can be unpredictable and overwhelming. We prefer to stay home, not to go on big excursions. Big excursions bring unpredictability: meals aren’t at the right time, fatigue sets in, sitting in a cramped van with your siblings makes you feel irritated, your shoes might not be tied tight enough, the sun might be too bright or the clouds might be too cloudy, there are too many people, there aren’t enough potty stops, you might feel too hot or too cold, there is too much unknown…all these factors can set off a rage. It’s tough to walk the line between total isolation and some life outside our comfort zone.

Our family has spent a lot of time in therapy. We’ve dealt with many issues over the years, among them being how to handle rages. The kids have learned techniques to stay calm, or become calm when they are angry. Some of the kids are on medications for stabilizing moods so that we can maintain a more even keel of emotion in our home. Despite our best efforts at teaching our family to be calmer, we still struggle with Anger. We have scars from the years of living with Anger- both emotional and physical. It has not been easy.

Life is definitely better, and less angry, than it was a few years ago. But Anger still wakes with us each morning. Anger still follows my kids home from school. Anger still takes a place at our dinner table every evening. Sometimes the first words out of my darling’s mouth in the morning go something like this: “I hate the spots on my ceiling.” (Mama isn’t a professional painter. Sometimes I leave a stray spot of wall paint on the ceiling. sorry.

You never know what will set my babies off. The routine of getting ready for school is fraught with danger. Danger of Anger intruding, and then not being able to reel my child in from the rage and make it to the bus stop in one piece. The afternoon routine of homework, therapies, and play time is also wobbly with the prospect of problems. And then there’s dinner time, bath time, bed time. Forget it. All one big blob of possible rages.

Now don’t get me wrong, I know all kids can be irritable. I know every human gets angry. I’m not talking about that “normal” level of emotion. If you have a child with Anger issues, you’ll know what I’m talking about. It goes beyond “normal.” It is unusual and atypical, unpredictable and persistent, all-encompassing. And a massive pain in the butt to deal with.

Once in a very great while we have a perfect, stellar, gift of a day. A day when the stars align in the heavens and all of my children are calm at the very same time, for more than three minutes. We may experience Anger, but at normal levels, not obscene levels that are typical for us. I can count one day so far this year when that has happened. Last year we had two days like that. I know the exact dates. No joke. Those days are quite an enormous blessing. I am always curious if that is what life is like with typically-developing kiddos. I am shocked and amazed when we have one of our Wonder Days, because I am blown away by the wonder of no walking on eggshells, no meltdowns, no arguing, no rages that take on a life of their own and destroy our day.

When you live with constant irritability and rage, you’re always on edge. You never know what will irritate a kiddo into a full-blown meltdown. You never know when it’s coming or how bad it will be. You don’t know how long it will take them to recover their peace. So you live on the precipice of fear every day, all day long. The fear sits in your stomach, making it churn, making you sweat. The fear burns out your adrenal glands, your thyroid. It gives you PTSD. It heightens your anxiety and drives away sleep. It makes you jumpy as hell.

BUT. Living with rage also makes you appreciate more than anything in the Universe those few and far between times when all is right with the world. When our family completes an activity together and there aren’t any rages or meltdowns, it’s monumental. And amazing. And so so wonderful. 

The kids are not in control of their Anger most of the time. Their little brains are on fire, so they can’t be held totally responsible for their actions or emotions. It would be like expecting them to be able to lower their own fever. Totally out of their control and impossible. They can not control their anger when we get to Raging Mode. I look in my raging child's eyes and know in my heart that they are helpless over what is happening to their bodies. No amount of therapy or medication or discipline makes any difference if your brain is inflamed and your body is out of control because you are ill.

I had a scene pop in my mind the other day of a dagger slashing through the ocean. At first I was like huh, no clue what that means. The more I pondered my vision, I realized the dagger is my children’s anger and the ocean is our family’s love. Sure, the dagger is dangerous, sharp, and horrifying. But our love, well, that’s an endless, bottomless ocean. Like a dagger through an ocean, the Anger that my children can’t control can slash through our family time after time, trying to rip and tear our love apart. But the anger can’t make a dent in this ocean of unconditional love. No matter what, our love will heal the spots the anger tried to demolish. Sure, we have some wounds. But the ocean of love we have for our children will envelope those scars like a soothing balm. No permanent damage will be done by the Dagger of Anger. Our Ocean of Love is too powerful.


Hana Copperman said...

Around 30 years ago (seriously) I was in a support group of people with TS. This was just at the beginning of the point when they realized it was neurological. Anyway we went around the room, a group of people mostly in their 20s, and said what started your TS? The two main answers were open heart surgery and strep. So anecdotally I've known about strep for 30 years. The medical profession just has to catch up.

And your posts are awesome. I get them 100%. Good luck.

Not all of my kids have these issues. And I noticed that when I'm alone with an "easier" kid I got wonderful compliments about my parenting. So just keep in mind that you're doing a great job.

Carrie said...

Thank you for your comment! Isn't that interesting? I'd never heard about the link between heart surgery and TS. I think there is so much we don't know about all of these issues. It's sad that the medical profession tends to be so rigid. I am grateful we've found a doctor who listens to me and knows from his own experience that I'm not making all this up! :) Thank you for your kind words, they mean a lot. I hope your whole family is healthy and happy today!