Before This

It’s one of those days.

The kind where Jack is amped up on a hormonal hyperactivity cocktail. Where it’s gray outside and gray in my head. Where I found a big poop on the deck. Where Truman is screaming about basically everything. Where I’m unsure how everyone everywhere accomplishes so many things because I am just muddling through. All of it.

Some days feel like I have a sucking chest wound, except it doesn’t heal. It gasps and weeps and bleeds and I pretend it doesn’t hurt, because it is always here and no one wants to hear about the ubiquitous chest wound that will never go away in this life.

Lifelong severe developmental disabilities aren’t like childhood cancer or a car accident, a contained time of tragedy that everyone can rally behind with fundraisers and donations and service projects and magnanimous shows of support. It’s not like that when it’s all the time and pervasive and WILL NEVER GO AWAY. No one wants to get caught up that mess.

Just to be clear, I do not want a fundraiser or donations, et al. That’s not what I mean.

What do I mean? It’s painful to articulate, but I’ll try.

Disabilities isolate. They make us “other.” Disabilities exhaust. They do not take vacations and leave us alone for periods of time. Disabilities distress, emotionally. Disabilities remain. Despite celebrity and organizational claims that autism is “curable,” it isn’t. Brain differences can’t be fixed with all manner of therapies, just because we want them to be.

Some days I feel the added burden of having not only children with disabilities, but a child with severe limitations and aggressive behavioral issues. Our trials are ugly and they aren’t fixable. It’s that old, lurking, shameful sense that our disabilities aren’t sweet and gentle. They won’t go away in a month or a year, or ten years. Our challenges aren’t pretty and they aren’t fashionable.  (I will venture to say that most people with disabilities probably feel this way. Perhaps people with challenges of any kind feel this way. It’s all difficult. The End.)

Jack has been smashing our dishes this week. I found several green Ikea plates in pieces in the window well. Then he started pushing them off the counter, *crash*. Sometimes when he gets frustrated, he bites himself or whacks his head against his knee. This self-harm is new. I hate it.

Ikea dishes are cheap, which is why we buy them. Poop in the backyard is easily fixable. I’ve cleaned it up, but I’m left with a sense of emptiness at the prospect of filth and destruction and attacks on himself and those close to Jack in perpetuity.

I’m trying to turn inward and upward to find the peace that I know exists because it’s dwelt with me before. I am reading in Exodus and in Helaman every day. My prayers are focused and direct. I re-read my patriarchal blessing and went to the temple.

I’m still in the lowlands, but I’ve had a few insights flicker at me from up ahead. They all have to do with my life before this life. Things I accomplished. Things I chose. Things I wanted. Things I’m capable of. I feel that God is telling me that there really is more than right now. He is saying, “You don’t remember it, but there was a whole life before this, and you wanted to come here and grow.”

I feel he is also saying, “You can do it.”

 

 

  8 comments for “Before This

  1. ashley
    September 1, 2016 at 6:37 pm

    My friend, you somehow always sum up so eloquently how I feel. Your posts are always filled with truth and light. I hope your heart is lightened in the days coming.

  2. Allison
    September 1, 2016 at 9:18 pm

    I so appreciate your posts. My little nine year old struggles with anxiety and ocd. It’s been hard since it surfaced at three years old. I’m just now realizing and finally defining what he has. It’s a daily challenge. Especially since he’s so good at school so no one has a clue how hard it can be at home. Sometimes I just want to stop talking to anyone outside of my family because I just don’t have words to describe how hard it often is. Most people have no idea that he had these challenges yet they are a daily part of my life. Your blog gives me inspiration and strength. Thank you for being so honest.

  3. Mia
    September 1, 2016 at 9:25 pm

    I’m so glad to know God has a plan and that there really is more to this! Thanks for sharing. I hope the clouds part for you soon. Love you!

  4. Kerri
    September 1, 2016 at 9:39 pm

    Love love love you.

  5. Blue
    September 2, 2016 at 12:28 am

    that veil is both blessing and curse. you are nothing but a blessing in this life. i’m sorry it feels like you’re cursed sometimes. praying for more joy to just flood your heart, even when such joy just seems irrational. xo

  6. Pamela
    September 2, 2016 at 3:33 pm

    Your posts help me feel better. My severely Autistic son had a melt down at the Autism Carnival this weekend. A kindly State trooper who was working at the carnival helped us even get to the car. He had an earlier meltdown at church two weeks ago and started throwing hymn books at people. Two big men helped us get him out of the Chapel and into the car. Thank you so much for your posts. I read them to my husband and we both feel better.

  7. Barbara Thornton
    September 2, 2016 at 8:33 pm

    Big, giant tears streaming down my face as you get right at the kernel of truth and heartache with your beautiful writing. Thank you, thank you for your words that help me heal a little bit every day and I pray that you are healed in sharing them.

  8. Kayo
    September 3, 2016 at 4:37 pm

    I’m crying my eyes out. I really hope you’ve found that inner peace by now. Sometimes I get exhausted raising just one healthy, active 2 year old girl. She has only broken one dish in her entire life. She pees and poops her pants at inconvenient places, but that’s just a part of potty training. She constantly has scrapes and cuts, but she doesn’t hurt herself on purpose. Yet, some days I am just exhausted. Most of the days, everything is fine. So I can’t even come close to truly understand the difficulties you are facing. I am in awe of you because God gives us only the trials we can handle.

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