The Problem with Sugar-Coating Life: A Dissertation

Jeff had to work late tonight and Jack’s two helpers were both unavailable, which meant I was the lone woman in the house with the children when:

a) Truman screamed and cried about Nerf guns, toast, and bumping his hand on the furniture when he slapped it with rage.

b) Jack followed me downstairs and discovered my secret soda hiding place. It’s no longer secret.

c) Jack opened a soda and poured it all into the couch.

d) Jack ran out the front door, curled up on the cold porch, and refused to come in.

e) Jack lunged at me when I told him to come inside and did Crazy Tongue Face, so I put him in his room.

f) Jack peed under his door, into the hall.

g) Jack peed all over and around, but not in, the toilet before his bath.

h) I felt a fair amount of anger.

I keep thinking that Jack’s violent outbursts are building. Even when he has a mostly terrific day, there is still at least some aggression and destruction.

And so, beneath all of my anger roils fear. It’s the emotional undercurrent below all the other emotions. It’s hard to be zen about a situation that is perpetually difficult, with regular periods of violence/chaos/unhinged-ness thrown in.

I don’t have any conclusive answers about this situation. I have no sage wisdom culled from the daily war. I fear how much worse it will become. I don’t believe this is me being a pessimist who lacks in faith. This is me living my life as is actually is. I can’t sugar coat it.

I was telling the physical therapist about this as he did painful things to the muscles in my back yesterday. He asked about Jack, so I described the car tantrums, the biting, the smashing of household/classroom items, the punching, et al. The therapist said two things.

First, he said he respected me because he would really struggle with a family situation like mine. I was like, “I AM really struggling with it. Yep.”

Then when I didn’t immediately conclude the conversation with a loving epistle on Jack and why we adore him (keep in mind, he was brutalizing my back through all this), he asked, “But he’s a great kid and you still love him, right?”

I’ve noticed that this sort of thing happens quite a bit when people hear some of the more distasteful parts of life with a severely mentally disabled person; it’s an almost tangible sense of wanting me to instantly follow a description of our painful experiences with something that negates everything I’ve just described. It’s like they wish I would follow the bad stuff with a line like, “But it’s not really that hard and it’s all worth because he’s an angel here on earth.”

It happened at TJ Maxx the other day. The cashier and I were chatting as she rang me up. The topic of kids came up. My special-needs and all-boy family came up. I joked, saying something about how raising my particular kids is an insane way to live your life.

“But they’re really cute?” she asked. “They’re so great that none of that matters, right?”

How do you explain a home life like mine in 30 seconds? Perhaps people are sometimes so horrified by reality that it makes them uncomfortable hearing someone talking about it frankly, without tying it up in a sweetly saccharin bow at the end.

Of course I love my children. Of course I regret nothing with having each of them. But I cannot tell an honest tale of hardship and trial and then follow it with a “actually it’s really not that bad and everything is roses and my violent nonverbal kid is totally angelic and I love being a mom!”

I can’t do it, you guys. I cannot be glib about the bell jar that disabilities has placed over my life, sucking out the air and pressing down all around me.

If random people who I have conversations with in various public settings want to hear about my family, I will tell them, happily, what life is like for us. But it will be honest, and may be jaded by years of intense survival in caregiving.

We don’t expect war veterans and cancer patients to simply tell us what they love about combat or PTSD or being sick. But we want special-needs people to be fuzzy and adorable.

I think the world is more comfortable with the image of an angelic, sweet, smiling, and unobtrusive special-needs child.

Someone like Jack is harder to puzzle out and neatly embrace. He’s big. He lunges around unpredictably. He strips naked on a whim. He’ll violate your personal space, smelling your face or hair and taking things from your hands. He’ll scream and hit and bite when he is frustrated and angry. He throws and breaks things intentionally. He laughs afterward.

Is Jack an angel? He is a person stuck in a disabled body. Disabilities render him difficult to handle. He is a teenaged-sized eleven-year-old with the mind of a toddler. And he can’t speak.

I believe Jack’s spirit is angelic—valiant, pure, and good. Someday after all this mortality business he won’t be disabled anymore. He will talk to me and tell me all the things he ever wanted to say and it will be indescribable.

But right now, it’s hard.

  
 *happy Jack, waiting for the bus*

  8 comments for “The Problem with Sugar-Coating Life: A Dissertation

  1. Alicia
    November 25, 2015 at 12:37 am

    It is so hard finding adequate help, and expensive! I’m very sorry! It sounds like you are weary and need some extra help, extra something. I know you don’t know me, but I’ve been there with my brother. I know exactly what you mean. People will never understand it unless they are there themselves. I’m praying for you!

  2. Mandy Harker
    November 25, 2015 at 7:22 am

    I wanted to slow clap after I read this.

  3. Kerri
    November 25, 2015 at 9:15 am

    Thank you for not sugar coating. I have a dissertation to write you back because I adore you and I adore your honesty and I want to say amen. But I will leave it right there and say thank you.

  4. Bob Morphis
    November 25, 2015 at 9:23 am

    Hard to read — yes. Hard to hear the harsh realities! It makes me ache to find a way to FIX things for you and your family, knowing there are NO easy fixes. Finding what is best for one that might also be best for all seems impossible. Prayer is my only solace since I can do little else. Love & prayers!

  5. November 25, 2015 at 1:29 pm

    Yes! M, you just always say and question the real deal. I love it. I am wondering now, why do we always have to follow a discomfort or even excruciating reality with, “but…it’s fine” or “but, he’s cute and I love it.” I just did that today about a work situation that is not okay, but I looked my boss in the eye and said it was “just fine”. WTH. So thank you for being real. And all the little details about your days and Jack’s moments speak and say so much more than trying to explain and sugar coat.

  6. Melanie
    November 25, 2015 at 6:42 pm

    I know the exhaustion of taking care of 4 boys as my 4 are similar in age to yours – it’s hard – but when I read your posts about the physical, mental and emotional exhaustion compounded by special needs, your life is 100 times harder, which is probably why I come back to your blog over and over, to remind myself of that. Thank you for your example of strength and love and faith as you mother your children day by day.

  7. November 29, 2015 at 10:06 pm

    You are amazing, Megan! I love this post so much. I think I sometimes even feel an obligation as a parent to be “fuzzy and adorable” about special needs because it’s not some external thing that everyone can band together and hate, mourn and fight against. It’s my daughter and her struggle. I fear that if I’m too real about the hard stuff, people will question my devotion to and love for her – which is also very real.

    “We don’t expect war veterans and cancer patients to simply tell us what they love about combat or PTSD or being sick. But we want special-needs people to be fuzzy and adorable.” So, so true. I suppose this is so difficult because it is a situation and circumstance so thickly intertwined with a real person. And one that we deeply care about. We can hate cancer and not the cancer victim, but when someone has a disability (particularly when they are congenital) it feels like much more a part of who they are. Or at least that’s how it seems that most of the world sees it. And to loathe the special needs would feel like loathing the person as well. This is so hard.

  8. Molly
    November 30, 2015 at 1:54 pm

    Love your realness, if that is a word!

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