People who equate truth with fact are missing the point.

The Cosmic Measuring Stick of Love

Since I appeared on The Ricki Lake Show: Inside Childhood Mental Illness last Wednesday I have heard from dozens of parents. Most say some variation of “Thank you for sharing your story. It makes me feel less alone.” Some are pleas for help finding appropriate services (How painful, not to have an answer, but I am just a mom with a blog, not an agency.), and quite a few say something like, “I know I shouldn’t feel this way, but……” followed by an outpouring of fear, anger, rage, hate, despondency, terror, helplessness, hopelessness, and regret.

I have tried to answer every one, but I got a little lost somewhere among Facebook, Twitter, blog comments, and email, not to mention the comments on the show’s website, FB page, and Twitter feeds, but I’m answering all the people who write, think, and say, “I shouldn’t feel this way!” with the following commandment:

Give yourself a break.

There is no way that any of us should or should not feel. We get enough judgmental crap from family, friends, and that guy in line at the post office. We don’t need to do it to ourselves. Let’s start with some truth: having a child with a serious illness sucks. It sucks giant, hairy, unwashed monkey ass. Yes, there are blessings. Yes, some of the consequences are lovely.

Whatever.

We will see the blessings and the loveliness when we are good and ready and not one instant sooner. Do you know to whom we owe a sunshiny, rosy view of things?

Not one person, anywhere, ever.

Here’s the thing: the first step to learning to live with all those painful feelings is to stop condemning ourselves for having them.

Feelings are not like actions. Our actions are up for debate. If I punch someone in the nose, or drop my drawers in the middle of a restaurant, or drive my car too fast, or starve my kids, people (perhaps represented by law enforcement) have every right to say hey, cut it out! That’s not OK. We don’t accept your behavior.

Feelings, though, belong to the feeler, and they are never good or bad, right or wrong. Some of them are wonderful to experience and some of them are like being ground to bits, but they are morally neutral.

Carter on his quilt ~12 monthsWhen Carter was a baby, I was consumed with guilt over the fact that I had enjoyed my other babies so much more. I believed that I loved my other children more than I loved Carter. Dozens of people have written to me in the past few days expressing similar anguish over loving other children more than their ill children, or not loving their ill children as much as they believe they should. We wring our hands and ask over and over, “Do I love him/her enough? How can I love one more than the other? Am I not supposed to love my child unconditionally? I must love this one as much/enough/more! I must! I am a failure as a parent and a human!”

Could someone please show me the cosmic measuring stick of love?

There is no love measurement. Remember where we started: having a child with a serious illness sucks. Here’s another truth: having a child with a serious illness that causes that child to act mean/vicious/violent/cruel/aggressive, or prevents us from taking care of our own basic needs (sleep, cleanliness, food, exercise, socialization) sucks ultra-triple-super-extreme.

Another truth: when someone is being mean/vicious/violent/cruel/aggressive to one or more of our children, we will have a protective reaction, even if the person being mean/vicious/violent/cruel/aggressive is another of our own children. That makes those feelings of love and kindness really difficult, if not temporarily impossible.

When we are restraining children who hiss and spit and bite like angry cats, and our hearts are thundering like trains and we ball up our fists and press them tight so we do not punch and we clench our teeth so that we do not bite, that is love. It doesn’t feel like love. It feels like raging helplessness. Nevertheless, that’s love (with teeth), and it’s the same love we feel when we enjoy ice cream sundaes with smiling children who tell adorably bad jokes.

Love is only sometimes about warm, happy feelings. Every parent learns this lesson eventually (by puberty at the latest), but we must learn it earlier, faster, deeper, and more violently.

Another truth: humans have emotional limits. If you’ve ever watched someone near the end of a long race hit the wall, you know the human body can come to the end of its endurance. What most people don’t know is that we can hit an emotional wall, too. None of us has a bottomless well of compassion, empathy, and kindness to share. Not even parents. Not even the mothers of special needs children, who, in spite of popular myths about saintliness, great strength, and an abundance of patience, are utterly ordinary.

It is a misery to have conflicted feelings about our own children, to be plagued with regret for birthing or adopting them, guilt for our shortcomings in parenting them, and fear for the ways they will continue to change our and our other children’s lives.

Self-flagellation is not the cure for that misery. I promise you, with all the confidence of 19+ years of parenting and more practice in brutal remorse than anyone I know, that there is no problem so great that self-flagellation cannot make it worse.

The outrageous and surprising irony is that, once I gave up on trying to see the bright side and looking for the silver lining and other assorted nonsense and admitted to myself that having a kid with serious mental illness sucks, and I hate it, and I would trade it in red-hot instant? That’s when I started to come to some kind of tentative peace with the whole mess.

And it’s a mess. Oh, yes, no mistake, we are not on some alternate-but-just-as-lovely-in-its-own-way life path over here.

Do you know who needs me to see Carter’s illness and the fallout it has created in our lives as an alternate-but-just-as-lovely-in-its-own-way life path? A whole lot of people who don’t matter; people who don’t get it; but the fact is, I can love Carter wholly and completely and also feel bitterly angry at what his illness has brought into my life and my family.

The more fully I accept that anger, the more often I feel the love.

What happened to Carter is flat lousy. I don’t help myself or anyone else when I pretend otherwise. I say again:

Give yourself a break.

What you feel is what you feel. It’s all OK.

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All that said, sometimes our feelings get the best of us and we do things that are destructive and hurt us, our children, or others. If you need help or support, please ask. (All these resources are in the US.)

If you have hurt or are afraid you may hurt your children, contact the Childhelp National Child Abuse Hotline at 800-4-A-CHILD.

If you are concerned about your own or a loved one’s alcohol or drug use, call the National Council on Alcoholism and Drug Dependence at 800-622-2255.

If you are suicidal or feel like you might hurt yourself, call the National Suicide Prevention Lifeline at 800-273-8255.

If you feel that your health and safety, or that of your child (or anyone else), is in danger, or that you or your child (or anyone else) may hurt someone, call 911 or go to the nearest emergency room.

If you want to talk to other parents who are raising children who have special needs and you’re on Facebook, send a join request here.

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12 comments to The Cosmic Measuring Stick of Love

  • Stephanie

    I love you! So glad I found you <3

  • Pat

    I too, had a child with a serious mental illness. My son had major depressive disorder. He attempted suicide many times between the age of 14 and 21 when he succeeded. I hated his illness. I hated the things it made him do. His disease held us hostage. I never knew if I was going to come home and find him dead in his room. Or if he left the house, was he ever coming back again? (That is what happened. He left and after searching for days, his body was found 4 days later.)
    Some days, he wasn’t very lovable. His disease made him nasty sometimes. And I got so very tired of the uncertainty. I worried about him constantly. So I understand the anger you wrote about. And I don’t care who knows it.

  • Thank you for writing this.

    Sometimes I get so frustrated with the routine of supporting someone with OCD… The checking and checking again. The verbal checking. The rituals and routines we must follow to leave the house or go to bed or to eat. All of that. Sometimes I am upset with the disease, and sometimes I’m upset with my son– usually for perceived backsliding. It sucks that my son has this. It sucks that he backslides on occasion. It sucks that he will always have this. It sucks that we have to change the way we do things.

    As soon as I realized that I don’t have to be a martyr for him, that I have the right to be exasperated once in awhile, that I have the right to say this sucks… It was as if a huge weight had been lifted from me. I don’t have to always be the ever-kind, compassionate, caring, empathetic, patient one. I get to say this shit sucks, too. And saying that? It doesn’t make me a bad mom, and it doesn’t make his condition worse (which was my fear for quite some time– that I was causing additional anxiety if I had anything other than the calm, collected demeanor). It actually gives him the room to say that this sucks as well. It makes it okay for us to discuss the frustration and anger his disorder brings and then deal with it.
    Sarah recently posted..Prevention

  • Sarah

    I love this! You have just wrote how I feel but am afraid to let anyone know. Im so glad I found you.

  • Well said, Adrienne. I would also like to say, if any of you need to talk to someone who “gets it”, there are a couple of resources available for you. The Parents Like Us Club is a collaborative blog community focused on providing information and support to parents of children and adolescents with severe mental illnesses. For parents, by parents. We all live this everyday. You can find us here: http://parentslikeusclub.org/ or on Facebook here: https://www.facebook.com/ParentsLikeUsClub . There is also a private Facebook based online support group that is associated with the Parents Like Us Club. You can request membership here: https://www.facebook.com/groups/144622772289553/ (note: you do have to be a member of Facebook to access this group). My heart goes out to all of you, and I am always here for any of you.
    Jenny Kate Ness recently posted..No is Not the Right Answer – Amy’s Story

  • I love this so much. I always feel so guilty for these same feelings. Thank you.

  • I am very glad you wrote and published this. Your appearance on the Ricki Lake show was extremely important. I was left, however, with the notion that because you appeared so accomplished and poised that the agony and angst caused by a family member suffering from mental illness were not adequately conveyed.
    You are a welcome beacon. Shine on!!!!!
    Thank you.

  • anne

    wow. you are absolutely incredible. i feel like you are inside my head – saying all the words that i wish i had words to say. thank you . anne (mom to Joshua – age 13 bipolar nos,anxiety disorder odd, ptsd, rad,adhd, ive lost track of the rest -addicted to crack at birth – tried and failed so many different meds that its not possible – currently fairly calm on haldol 20mg daily (yeah 20), clonidine, cogentin, concerta and visteral- adopted at age 2 – putting me through hell at the present time waiting to start at what will be his 6th school… )

  • Tobi

    Hi Adrienne,
    I want to start by saying your writing is amazing and you are by far one of the strongest people I have heard of.
    I saw you Ms. Hickey on the Ricki Lake show and I wanted to contact you regarding a request I have. I sent this same request to Ms. Hickey and she suggested that I contact you as well.
    I am a psychology student and I am currently working towards being an art therapist. I have been assigned to do an presentation in my psychology class on perspective. Since this is an Intro to psychology class and not all the students are psychology majors, I want to introduce artwork to them that shows deep meaning by the artist. Nothing is deeper than artwork done by a mentally ill person because it is the images in their heads that are finally set free on to paper. The reason why I am contacting you is to ask if you have any artwork that Carter would like to share with me for my presentation? I also want to expand this presentation to show that many famous artists were, in fact, mentally ill includeing Monet, Picasso, Jackson Pollack, Adolf Wolfli…. the list is infinite.
    My presentation is due on July 16. I would greatly appreciate anything you have to offer.
    Thank you so much!
    Tobi D.
    tobi.dannemiller @ gmail

  • Jill

    Just found your blog. I have to say its one of the most powerful blogs written by a parent of a disabled kid. Honest yet kind. I share all your views but I can relate to what I’ve read so far.

    Yea. I have one of kids too. You know the kind of kid that have the professionals scratching their heads. The kind of kid that is so amazingly awesome that you spend huge amounts of time and money and energy to help. And normally you move slowly forward but often its not enough. Because in spite of all the work and thought and love, you still are at the hospital trying to save his eye because he beat himself in the face one time too many. Or that huge ball of fear has over-taken you because he’s angry and he’s hitting you and you’re not sure if you are going to get away. Or the weariness when another direct care staff quits (for whatever reason) and now its time to look again for that perfect person to help us so we can continue.

    But then he starts doing better and you’re enjoying him… just watching TV together or going swimming. And most the time you can stay upbeat and positive because the alternative is just too difficult to think about. In fact, its better not to think too much.

    And then one day he’s 18 as it was for me this summer. Where is the celebration as I fill out all the forms and move into the adult disability world? Am I done? No but I’m still working towards that. Is it achievable? Yes Yes, I have a sensible plan for my special son’s adult life. One that will eventually free me from the day-to-day caregiving responsibilites to a lessor role of checking-in and weekly sleepovers.

    But I ask, where did I go in the last 18 years? Who am I now? I don’t recognize myself. What happened to my marriage? Where are my friends? No I think its better not to think about that. I have to believe that God will provide for me again… when I have time and energy for such things.

  • Jill

    I meant “I don’t share all your views but I can relate….”

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