I've been thinking about this post for a while now--as a matter of fact, I've written it in my head many many times over the past few months, but it's never come out onto a computer screen "just right".
And I think that's because it doesn't ever feel "just right".
NOTHING about Sensory Processing Disorder feels "just right"--that's pretty much the whole idea of the disorder, right there.
So, as a parent, and as family members, and as the child, all living with SPD, it makes sense that it all comes with a whole bunch of jumbled up emotions over the whole "just right" concept--right?
Yeah. Now you know why this has just been in my head to this point...
I thought I would take a few Fridays to talk about all of the emotions that come up as my Firefly and myself, and our whole family, deal with daily life with SPD. My first idea was to do a "top ten emotions we have in a day" type of thing. Then I realized it might be more appropriate to write a "top ten emotions we have in five minutes" post. Or maybe "the one emotion we can actually label". Or even "what not to do when you are feeling fifty different emotions at one time".
But instead, I'm going with "what one emotion can I talk about today?"
When I think about our life with Sensory Processing Disorder, that's the one word that glaringly sticks out in my head.
Lots and lots and lots of anger.
I am angry. A good deal of the time. I am angry that this had to happen to my family. I am angry that we don't get to do things that everyone else does. I am so very angry that I have to use so much mental energy to plan our days, because I have to find escape routes, or watch for sensory overload, or worry about "picking up the pieces" later. I am angry that my kid isn't "normal".
I am angry that we can't have a "normal" day. I am angry that we have to follow special diets, or
waste spend money and time on therapies and doctor's appointments. I am angry that my eleven year-old has been on mood medication for more than half of her life.
I am angry at Firefly. Very much of the time. Angry that she can't control herself--still--at eleven years old. Angry that she seems to deliberately push my buttons. Angry that unloading a dishwasher can (and often does) take all morning because of the tantrums. Angry that she bosses everyone else around. Angry that she seems to disproportionately take up the time and energy of her parents.
Anger at my husband and other children. Angry when hubby doesn't seem to understand the exhaustion that hits me at the end of the day, and he just wants to yell and scream at Firefly to act right. Angry at my other children for having the nerve to need me when I'm in the middle of a trying day with their sister.
Angry at the doctors and therapists who can't "fix" her. Angry at everyone who doesn't believe what we go through on an everyday basis. Angry at friends who have kids who behave. Angry at having to continually advocate for Firefly and her needs.
And I know she's angry. She is always (seemingly) angry at me. She'll tell me so everyday! She is angry at expectations placed on her. She gets mad when I tell her no. She is mad that she has to take her medicine. She is mad that we limit sleepovers. She is mad when I tell her dad something she's done. She is mad when her brother or sister don't follow her orders. She is mad that she has to do math. She gets mad about her chores, about her socks, about a bad hair day.
She is mad that she has SPD.
I don't blame her. So am I.
But as I go back and re-read what I've written, I am mostly mad at myself. I sound like a spoiled baby. I am the grown-up--at least my age tells me so. She is the young lady who gets to fight her fight every. single. day. I can walk away when I need to.
Do I get angry with Firefly? Yes. Every day, just about. Do I get mad at the rest of my family? No doubt. Do I get mad at friends, at the rest of the community? Yep.
Do I get mad at God? Absolutely.
And then I come full circle, back to:
There is a plan, and it may not be the one that I wanted. As a matter of fact, I'm pretty damn sure that it's not the one I wanted. But that's why God is God and I'm not. He knows what He's doing.
Firefly, and me, and Turtle, and Bug and hubby, are living this life on purpose.
He knows what He's doing.
And I'm pretty sure He can handle my anger at Him.
And when I look at it that way, I'm not quite so angry. I can take a deep breath, and pull up my big-girl pants, and give my kiddos--all of my kiddos--a hug.
I think it's OK to be mad. But it's not OK in our home for our anger to rule us. We feel it, give it a name, cry over it (or scream), talk to God about it, and move on.
Will it come again? You bet. Probably pretty much daily.
But we won't let it beat us, or our relationships with each other and our Father. We've got to fight that fight every day, and with His help, we will win it.
What about you? Does your anger over the hand you were dealt get in the way of the life you want to live? What do you do to keep your anger at bay?