Military Special Needs Network

Proudly Supporting all Military Families with a Special Needs Dependent

My Worst Nightmare – and it’s Real

I dread nightfall. My body yearns for sleep, but my mind will not let it come peacefully. My dreams are haunted by the sounds of my daughter’s screams. These are not screams of joy or anger, these are screams of agony.

“The Sick Child”
Edvard Munch, 1896

A few months ago my daughter Josie underwent brain surgery. The procedure itself went well, but the first 24 hours in recovery did not. Josie had a reaction to one medication while coming out of anesthesia and so all meds, including pain killers, were halted until they could determine what medication was to blame. It turned out to be the antibiotic that was administered was in the penicillin family, which she is allergic to. It took hours to get her pain under control. The whole time I had to stand there, trying in vain to comfort her, while she screamed in pain.

Josie has no memory of that day or the following day. If you ask her about her surgery, she will tell you she had a hard time walking to the bathroom, she got a lot of pudding, and they had a great playroom. She remembers the juggler that came to visit and she remembers she got a lot of balloons and gifts from friends.

Thankfully she doesn’t remember the pain and the screaming; however, I do.

Rationally I know I should get help for this, but logically I  know it isn’t that easy. Between shuttling kids to school, therapies, and the normal kid activities, I am lucky if I get a chance to eat lunch. There is no time in my week to spend an hour on the shrink’s couch talking about my feelings. So I suppress them during the day and remind myself that Josie is better now than she was before surgery, she has no memory of that day, and things are fine.

My dreams remind me of a different story. I lose sleep because I stay up late so I won’t hear those screams or they wake me when I finally close my eyes. I rely on endless amounts of coffee to make up for the lack of sleep. My patience is lacking and so my parenting is suffering.

Call it pride, call it the independence of a seasoned military spouse, but until now I haven’t told those around me about my struggles. So often military spouses sugar coat the bad days to not burden our deployed spouse. They have their own stress while away, we don’t want to add to it. We suck it up and we deal with things on our own and often suffer in silence. When the spouse finally gets home, it is hard to say “remember how I said things were peachy keen? Well, I lied. Things weren’t fine and they aren’t fine now.”

Who takes care of the caretaker when they cannot?

For now, I do what many others do. I rely on distractions to get me through the day. I wrap myself up in therapy sessions for my son and school projects for my daughter. At night, I often find myself sleeping on the couch with the tv on to drown out my dreams. I continue to push forward as if things are fine, because for now, they have to be.

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Miranda is a Navy wife and mother to three kids: Hailey, Josie and Teague. All three have a swallowing disorder, Teague has ASD and Josie has Chiari. Miranda is the VP of Community Outreach for the Military Special Needs Network. You can contact her at MirandaFort@MilitarySpecialNeedsNetwork.com

One comment on “My Worst Nightmare – and it’s Real

  1. Jodi
    February 26, 2013

    You are not alone! My son has SPD, ADHD, is a horrible sleeper (co-sleeper at that). My fears of my own chronic illnesses & the effects on both he & I, keep me awake as well. Without the aid of a medication, I would not sleep. I too rely on caffeine to make it thru the day, despite that I know its not good for me! Finally after a year of thinking it, talking abt, I just made my first appt to talk with someone. Honestly, I’m looking forward to it.Still trying to figure out how to do it all including my own Dr. Appts & PT but know its what’s the best for me & for my family.
    You are not alone! Prayers your way!

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This entry was posted on February 26, 2013 by in All.
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