Carry On

I’m going to be really honest.

It may sound a little angry, although I truly do not intend it that way.

If it makes you uncomfortable, I’m sorry. Now is your chance to back away slowly. Go ahead and close this window and carry on, darlings.

We have been in turmoil for the last month, scraping along every day with wild and destructive behaviors ruling the house and everyone’s lives. We’ve been in survival mode, even more than we typically are.

Last weekend, things hit a new low when Jack attacked me and his siblings, threw my iPad across the room (shattered it), and bashed his head repeatedly on the floor every time he went to time out.

It really isn’t sustainable to have your ten-year-old hurting people.

It’s possibly the most painful, helpless feeling to watch your son slam his head on the wood floor of his room. I don’t recommend it.

So we suffered through yet another holiday when the blessed structure of school was absent and nobody at the psychiatrist’s office was working.

You guys, holidays really kill the autism family.

There is no holiday from developmental disabilities. School breaks for a family like mine do not equal beach vacations or ski trips. They just suck everything out of moms and dads who have to hold it all together.

You can still back away slowly. That option absolutely remains. No judgment here.

Anyway, I hit a new low yesterday, when hope dried up and I wanted to get in my bed and never get out. I told Dutch that all the advice that one hears about taking control and making positive changes in one’s life does not apply when you have a kid with serious mental and behavioral issues.

Decide what you want to happen in your life. Set small, realistic goals which will ensure that you achieve it.

Sorry, but this total crap when my dream is simply to have Jack stable enough to ride in a car again without hurting people and causing car accidents. I can set all the goals I want, but they won’t change Jack’s disability, his sensory issues, his non-verbal state.

Step back from people in your life who are negative, toxic, or overly demanding. Learn to say ‘no’ more frequently.”

*buries head in hands and sighs*

It doesn’t work like that when the person having destructive periods of psychosis is ten and you are his mom.

Visualize your goals. Picture yourself accomplishing them.

Okay, stop it now. Please. When I envision a home free from violent outbursts and broken electronics, Code Browns and pee-soaked bedding being tossed by Jack from his window into the backyard, I feel sad, not empowered. It emphasizes the discrepancy between us and the families who ski and go to movies and drive in the car without someone trying to scratch their eyes out. Visualization is powerful, but it has it’s limitations.

I spoke to the psychiatrist this morning and we have a new plan that has rekindled my hope. Jack was happy when he woke up and he went to school eagerly and without drama. I’m not despairing.

And yet ultimately, I can’t magically make Jack better.

I am staying thankful and hopeful, but I’m highly attuned to the true fact that some things simply are.

Some things are what they are, and no amount of positive thinking or gratitude journaling will fix them. It’s just life. Welcome to mortality.

Breathe deeply and carry on.

 

 

 

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  14 comments for “Carry On

  1. liz
    January 20, 2015 at 3:25 pm

    Megan,
    I love you and your family so much. As crazy as life is, I think we need book club again. 🙂 Miss you and would love to see you more. It has been too long.

  2. Cheyenne
    January 20, 2015 at 4:07 pm

    Megan,
    I am crying. I rarely use this term because I think it is HIGHLY overused, but indeed you are a hero of mine. Just this morning I was breaking down over the newly-found struggles of lack-of-sleep parenting, and then I read this. You are so strong, and I am inspired- and truly grateful for your honesty! There is a special place in heaven for you guys.

  3. January 20, 2015 at 5:32 pm

    Megan,
    I don’t remember how I originally happened upon your blog. I don’t know you in real life, and I don’t have special needs children. But I do strongly feel that gut pull to help out someone in crisis — to swoop in and rescue. Obviously I can’t do that. But I can tell you that you are a beautiful writer and a dedicated mother. And . . . I’m rooting for you and Jack and your entire family — all the way from Houston, Texas.

  4. Emily
    January 20, 2015 at 6:27 pm

    I don’t even know what to write. My instinct is to type something comforting and uplifting but I’m certain that you are not searching for words of comfort, not from me anyway. What I will tell you is that I think your family’s story is incredible and I want to thank you for taking up the digital pen and sharing it with me and the rest of the world. I cannot imagine what kind of strength it must take to not join in with the head banging on the floor. For that, and a million more reasons, I admire your courage as a mother and human being. I love reading every word you write and look forward to each and every post from your little corner of the valley. Love and prayers coming your way, Emily

  5. ann cannon
    January 20, 2015 at 7:01 pm

    I love you, Megan.

  6. Melody
    January 20, 2015 at 8:18 pm

    I think this is one of the most beautiful and horrifying things I’ve read – here or anywhere else. And I don’t mean horrifying like blood and guts. Just guts. This takes guts, sister. I wish I could ease your burden. Just know I’m on your team and that I think of you more often than you might know.

    P.S. You’re a remarkable writer.

  7. Kerri
    January 20, 2015 at 8:30 pm

    My dear Megan, I have so many things I want to say, but I’m not sure I even know how to say them. Sometimes your posts clarify truths about my life that I have been trying to recognize but have gotten muddled in my head. This is one of those posts. Mortality is more than messy, and I needed the reminder that some things we endure because we have to, and we hope to become equal to the task. Love you.

  8. Jen
    January 20, 2015 at 9:08 pm

    I know you’re hurting, dear friend. Please know that I am hurting for you and wish I could make it better. I’m here. And I love you.

  9. Genevre
    January 20, 2015 at 10:08 pm

    I’m sorry for the low days you had, and thank you for being honest enough to share. I’m sure it helps other families in similar circumstances,

  10. Robyn
    January 21, 2015 at 8:22 am

    I found you through a KSL article several months ago, and keep coming back because of the honesty and beauty of your writing. Thank you for sharing your raw and real emotions. You are so brave to be open and vulnerable. In the online world where most mommy blogs are carefully curated to seem perfect, I appreciate your acknowledgment of the raw and rough corners of life, strung together with hope and humor. I don’t normally comment, but I wanted you to know that your stories and insight have impacted my life.

  11. MJ
    January 21, 2015 at 8:54 pm

    A friend’s Facebook post sent me here. I feel changed having read your words. Not just changed — I feel charged with hope against hopelessness. And humbled that I share this earth with people like you. If everyone spoke their truth as purely and powerfully as you have, lies would lose all their power. Bravo, to you, Greatheart. And prayers for you and your family as you keep walking the path.

  12. Louise Plummer
    January 21, 2015 at 9:49 pm

    Keep writing it down, Megan. You’re changing lives. Love you.

  13. allison
    January 22, 2015 at 9:10 am

    You are amazing. There is no worldliness about you. I love your humility and strength. Thank you for sharing your heart. I am positive that Heavenly Father is well pleased with you!

  14. Lynne
    January 26, 2015 at 9:07 am

    I think you summed up the best advice already – breathe deep and carry on. Some days – maybe most days – that’s really all you can do.

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