I carry a 2-ton weight on my shoulders.
It is invisible.
Nobody else can see it, but I feel it every moment of every day.
It is indescribably heavy, but I will try to describe it anyway.
I want you to imagine that your eight-year-old child starts screaming one day. Not the normal playful screaming that all children do, but the blood-curdling scream that tells you that she is in extreme pain or dire distress or discomfort.
As a parent, what do you do? Of course, you drop everything, run to your child, your heart pounding, and you do everything in your power to save her from whatever it is that is causing the pain/duress/discomfort.
But let’s say your child can’t talk and doesn’t understand enough about basic communication in order to tell you what is causing that pain. What do you do then?
You start guessing. You check her entire body to see if she’s hurt. You offer her food in case she is hungry. You turn on the fan in case she is hot. Or put on a sweater in case she is cold. You make sure her bathroom needs are met. You do everything you can possibly think of to fix the situation.
But let’s say nothing works and all you can do is watch helplessly as she screams for hours until finally, she is able to calm herself down. And as you watch, your Momma heart breaks over and over again with the sheer helplessness of it all.
And then let’s say that after taking her to countless doctors, you are told that the condition is untreatable, and that the only thing you can do is to do your best to prevent the episodes from happening in the first place – to make sure your child’s every need is met before those needs even arise.
What would you do then?
I know that every mother who is reading this is now going through in her mind the anxiety-ridden task of cataloging every exhausting detail of her child’s day and figuring out how to pre-emptively meet every uncomfortable need her child has.
Are you tired yet?
Do you feel the heaviness?
I want you to now multiply that heaviness by roughly 3000 – representing the 3000+ days my precious Girl in Charge has been alive. And then add another roughly 18,000 – representing the 18,000+ precious days ahead of us where I get to have my sweet girl in my life.
I wake up each day knowing that every moment of her daily needs has to be anticipated. Her schedule is not just a schedule. It is a lifeline for my sanity. And even then, I do my best to plan into that schedule enough time for her sensory system to have a complete meltdown at any given moment of the day. And some days, it works, and we get through it with many peaceful, happy moments. Other days, it doesn’t work, and we still get through it… just a lot more emotionally depleted.
This weight… this 2-ton weight I carry on my shoulders is called Constant Anticipation. It is heavy. Some days crushingly so.
I have asked the Girl in Charge’s doctors and therapists what causes her sensory system to start on fire. They said it’s different for every child and because the Girl in Charge is non-verbal, she can’t tell us. So it could be anything. But some guesses are the temperature, the feel of her clothes, indigestion, fatigue, noise… really… it could be anything.
I also asked them what it might feel like for her physically when she is in a full-blown sensory melt-down, and of course, they don’t know that either. But they have offered me some guesses based upon what their verbal patients who have sensory processing issues have told them. They said it’s possible that what she is feeling is intense pressure in her head or body that grows and grows until it feels like something will explode, or it could be a dull ache everywhere that feels like it will never go away, or it could be as bad as extreme, over-all pain as though a thousand needles were being poked into her body over and over again….
When I put myself in her shoes and imagine that that’s what she’s feeling, as a mother, I have no choice. I have to do everything in my power to ease her suffering. Better yet, to prevent it in the first place.
It’s such an inadequate word.
The reason I took the time to describe all of that is that I have a friend who has asked me to meet her for lunch 3 times in the last few months, and I still haven’t responded. And I feel the need to apologize to her publicly. Most importantly, I just want to make one thing clear…
It’s not because I don’t love you.
It makes me very very sad to think that she might take it personally and that she might be left feeling hurt and confused. It breaks my heart. It really does. Because that is not at all how I feel and that is not at all how I want to make the people I care about feel.
So… this is me saying I’m sorry, I am so terribly terribly sorry.
But it is also me, as gently and as lovingly as I possibly can, setting a boundary. I am sorry… but I need it to be enough.
The bottom line is, I only have so much to give. I’m only human. And that invisible weight I carry is so exhausting- emotionally, physically, mentally, spiritually- yes, all of it. There is no part of my being that doesn’t get completely wiped out by it. And on some days, I just don’t have anything else to give. On some days it takes every ounce of sheer willpower to get through the day without falling apart – and for me, falling apart looks like taking out my negative feelings on the people that deserve it the least – My Mini Me and My Mini Man and my husband.
Thank goodness for my respite worker who alleviates the constant care the Girl in Charge requires, otherwise her older siblings would get very little from me- or worse, the worst part of me. As it is, when I don’t have help – and sometimes I don’t – their needs are put on the back burner and they’ve grown up with that reality that sometimes Mom just doesn’t have anything else to give them.
Early on in the Girl in Charge’s life, when things were so overwhelming, I reached a very dark place because I didn’t have the ability to keep up with everybody’s expectations of me. Most people didn’t know what was going on in our lives, and the constant demands of friends and church associates didn’t let up. I tried and tried and tried to keep up with everything everyone else expected of me while dealing with devastating news about my new baby and I found myself sinking into a deep hole of despair where I actually questioned my worth. And it took the sweet whisperings of a loving Savior who told me, “It’s okay to say ‘no’ to other people, Susannah. You are enough. You are not failing.”
But even still, it took me a long time to get good at saying ‘no’- to say ‘no’ firmly and without guilt. But sometimes, even today, saying the word ‘no’ takes too much energy. Sometimes, admittedly, I don’t even respond.
That doesn’t mean you shouldn’t reach out and invite me to lunch. Please do. And if I am up for it, I will totally be there, and I will enjoy every single minute of being with you. But if I say no, or worse, don’t respond, this is me in advance asking for your forgiveness. Please don’t feel like it’s a reflection of my love for you. Sometimes I just don’t have it in me. And I’m sorry. So terribly terribly sorry.
But I need it to be enough.
I’ve had many people over the years tell me that I make it look easy. When they see me out and about with a smile on my face, teaching an acting class or running a summer camp or putting on a play or making a costume (or 168 of them) or hosting a political event or bringing someone dinner or teaching a church class or, yes, meeting a friend for lunch, they say to me, “Susannah, I don’t know how you do it all. You make it look so easy.”
So, let me apologize for that, too. I’m sorry I gave you the wrong impression. I’m sorry you thought that because on some days, after hours and hours and hours of mental and emotional preparation, I could give of myself to my friends and community, that you got the impression that all of that was easy for me. I’m sorry you didn’t see me in my weak moments when I yelled at my kids, or slept through my alarm, or binged a tv show because it was easier than facing reality, or failed to love my husband in the way he deserved to be loved, or any number of endless things I do so poorly in life, and so when I couldn’t bring myself to meet you for lunch, you thought it was because I didn’t care about you…
Please know that for every ounce of energy I expend doing all those things that I love doing out in the world with wonderful people like you, my body and mind and spirit require an equal amount of emotional, spiritual, physical and mental recuperation time at home. And then some… because of the added weight of the constant concern for my Girl in Charge.
The scales of emotional energy demand justice. They demand to be balanced. When I give other people my time and energy, my family gets the leftovers- the stale, day after, sour, slightly moldy time and energy. Or I get less of me. And it’s okay if that happens once in a while, my family understands. And I can take extra care in the following weeks or months to rebalance my mental state. But sometimes, I just plain have to say ‘no’ to things. So… please forgive me if I have ever not reached out or returned calls or if I have canceled plans. I did it in the name of preserving my energy so I could be the best mother to my big kids possible.
I’m sorry if I have ever not found time for you. It doesn’t mean that I don’t love you. Please forgive me.
But I need it to be enough.