This Particular Life

I’m not sure what undid me.

Was it Charlie screaming and sobbing in the driveway about toy guns while I finally picked him up and plunked him thrashing in the car?

Was it visiting the same two pharmacies four times in two days to fill the one stupid new prescription for Charlie that no one seemed to be able to figure out?

Was it watching the psychiatrist furrow her brow in sympathy as I described Charlie’s willfulness, disinhibition, and general tendency to fall apart when things don’t go as planned?

It might have been holding my non-verbal and very scared ten-year-old down for two separate sets of X-rays on the arm that had a visible break.

It very well could’ve been restraining a screaming red-faced Jack as the orthopedist reset his angulated bone.

Maybe it was when Jack lunged at me and tried to bite me as we drove home from the doctor’s office when I wouldn’t help him take the splint and cast off his arm.

Or when he poured a can of a Coke Zero on my bag in the car.

I’m not really sure.

But sometime during the tense drive from the orthopedic clinic to our house, with my left hand gripping the wheel and my right hand pushing Jack away as he lunged at me in anger about the cast-covered splint stuck on his arm, I vividly remembered a line from The Fault in Our Stars.

In the movie version, Hazel sits on her back lawn talking to Augustus on the phone. She says, “I do not want this particular life.” She doesn’t want a different life so much as she wants the same relationships with Augustus and her parents, as well lungs that work. She wants a life free of cancer.

The thing about this particular life of mine is that it’s ruled by autism and cognitive delay and anxiety. And today I wanted it all to go to hell.

Then I remembered what my friend Kristi said at support group. She said when her little girl with Vici syndrome was tiny, she mourned all the things her baby couldn’t do and couldn’t be. She mourned that her family would never be normal.

She lost friends who couldn’t handle the complexity of her life and her daughter’s limitations. She cared for Lila constantly, even sleeping with her so she could hear the seizures and prevent aspiration. She lugged the suction machine everywhere they went. She lost herself in mothering her immobile little girl, and found something precious. Something better.

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Kristi’s little tulip girl passed away this spring. Now her family is “normal” and she wishes they weren’t. She wants her blond, blue-eyed four-year-old daughter back, filling their home with light and her tangible spirit.

She wept over her plate of enchiladas when she told us, “My family isn’t special anymore.”

We fervently disagreed. We assured her that she will always be Lila’s mother, and that she is irrevocably, dearly special. That she has been since before she herself was even born. Lila’s gift to her mother was refinement.

My burden is different. The effacing, consuming, overwhelming parts are maybe not so different.

It’s not that I don’t want this particular life.

I mostly want the ability to handle it.

  6 comments for “This Particular Life

  1. allison
    July 19, 2014 at 9:13 pm

    This is beautifully written. I cried. Thank you. Oh, how I wish I could handle my own life!

  2. July 20, 2014 at 6:09 pm

    Can you put a warning on these posts saying *you will sob* so I don’t read them in public? My land Megan, this is beautifully written.

  3. Melody
    July 21, 2014 at 7:20 pm

    I can barely handle this. But you can, can’t you? There is really nothing I can say. But I do believe God moves in mysterious ways and that cursing brings a spark of the divine. (Also, sometimes I pray for you.)

  4. Katrina
    July 24, 2014 at 7:48 pm

    I took a break from blogs for a little while. Reading this, I think it has been a little too long. Thank you for such a sweet reminder.

  5. Leisha
    July 24, 2014 at 8:07 pm

    I love this so much.

  6. July 31, 2014 at 9:10 am

    We all hit that point, I think, where we stop and say, “Heavenly Father, I need you to help me get through this minute, and maybe the next.” When I’m super frustrated and getting to that breaking point, I think back to the seven years I spent hoping, praying, and struggling to become a mother. I have two miracles running around my house and doing their best to destroy it, but I can’t imagine life without them in it. Your friend truly is special, and her family too. The imprint a special needs child leaves on our lives NEVER goes away.

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