Sleep and Trauma-Drama

Sleep deprivation– a common characteristic of the tortured, the afflicted and the parents.  I’d like to take a moment of silence to remember sleep…but I have three kids so silence and sleep ran away together.

God doesn’t sleep, nor does he slumber, so I tell myself I am becoming more Godly. It remains to be seen.

Everyone I know needs more rest. We love sleep and are eager for bedtime. The darkness of night should be a time of restoration, but the sad truth is, night is RARELY peaceful, restorative or joyful. Things keep us up at night- aches, pains, nightmares, anxieties…children. This week I finally made the obvious connection between William’s uncontrollable and frustrating behaviors and why William can’t sleep.  Half of the behaviors were exactly what Jonathan did while William was in the hospital. We are back in our place of trauma. 

Our sleep struggles intensified around October. William would wake once or twice a night over the summer as we moved and readjusted, but now it increased drastically.  We have seen doctors, done sleep studies, and tried EVERY solution. We know 13 things that are NOT causing the sleep issues.  We’ve researched, tried everything again, and sat crying and praying as he thrashed and head-butted us. He would jump, bang doors and worst of all, hit his head on the floor.  We slept in his room, pinned him in with soft surfaces, and tried medication. We couldn’t leave him alone, so we took turns. I’d nurse and change Elizabeth’s diaper that then switch off, staying with William so my sweet husband could sleep the 3-5am shift before work.  Around 2-3am, Jonathan would wake up and want water and to be held. Four months later, we are finally in a routine. We have a new medication and a specialty appointment coming, but this is just life.

The waking times were exactly on William’s cancer/vitals schedule. He would sleep 9-12. Then he would wake at 2am for the pumps, 4am for the blood draw and chemo switch, 6am for doctor’s rounds. It is imprinted on us both. It took us both 9 months to stop waking up at those intervals.  How did I not figure this out sooner?!

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Trauma demonstrates itself in the body, especially in sleep. The articles that warn parents about the importance of sleep to development and end with dozens of well-meaning suggestions and product endorsements make me sob. My best falls short.

You can’t fix trauma for someone else. It’s not our job to fix it. You can only stay with them through it.

The thing about cancer and other trauma is that surviving it isn’t the hardest part. The aftermath is often worse and lasts much longer. It is as if we ran a marathon with a rock in our left shoe, walked a mile with it removed, and now are running another marathon with the rock in our right shoe. We are limping, but we are moving forward.

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At 3am I was snuggled in the bottom bunk with William, covering him with my arms and a weighted blanket. For weeks I had laid in bed mentally listing all the things I should be thankful for relating to William. In my frustration and exhaustion, it is a discipline rather than a joy, which is why it works. Night after night I would be so frustrated, so ANGRY, so tired of it all.

Worst of all, God wasn’t answering prayers for sleep. It is very hard to tell people who are fervently praying for a child to sleep that no one slept more than two hour stretches that week- again. It feels like failing at faith. Prayer is a great weapon, but it felt ineffective– this is a great deceit of the Enemy.

Finally, the Spirit broke my spirit. I listed differently.

I am thankful I can be at home in a bed with him rather than standing over a cold, metal crib. I am thankful there are no tubes to be caught in or pumps to beep all night. I am thankful he no longer pushes me away, but wants me to hold him. I am thankful the vomiting is over. I am thankful he knows we will be there when he cries. I am thankful he is MINE to fight for, in a world where many would have orphaned or aborted him. I am thankful cancer is out of his body. I am thankful for his life, even though we struggle daily.  I am thankful that he can rest, even a little.

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The kid is fighting, and it isn’t against me. It’s my job to climb into the ring- or the bed- and fight with him when I’d rather be sleeping or fighting my own battles. Love gets up. Love keeps fighting.

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The war in the darkness is won in the light of the morning.

I was once given a beautiful ceramic cup that read, “His mercies are new every morning”. I loved it. I thoroughly enjoyed it for the two mornings I used it before a son pushed it from the stroller’s cup-holder and I watched it shatter on the unforgiving sidewalk. It was when sleepless nights were becoming very common, and I began to cling to the hope of renewal in mornings.

There is something glorious about daybreak, especially after a sleepless night. There is a victory in it, no matter how exhausted I feel. It’s mercy.The cavalry comes in the morning. Daily Bread was dropped from the sky in the morning. Coffee is made (for most of you- I’m an outlier) in the morning.  We look up from our bed, couch, or trench and see hope when we see Light.  Our flag is still there. Our God is still alive and working. In Him there may not be sleep, but there is rest. That is enough until morning.

 

“How’s Your Hair?” and other important questions to ask me

Ask me about my hair. Really, I mean it. If you want to know how I am really holding up under the weight of sleep deprivation, a newborn, a wild child with Down’s Syndrome (who is still not sleeping well), appointments, a second child with cancer, and a rock of a husband who is leading at work and at home… ask me about my hair.

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Truly, after I laugh a bit– which I desperately need to do– when I answer, you can decipher it.

If my hair has been dirty for three days and is in a wild ponytail, SOS. It means I haven’t had a break to do more than a 5 minute pit-scrub.

Is it at least in a cute ponytail?I’m cruising.  Is there spit-up, peanut butter, snot, or some evidence of children in my hair? I’m crashing.

Then, on the glorious days, I may answer that my hair was washed AND dried that day. It means I hit the trifecta– a sleeping baby, Jonathan watching tv or playing with Legos, and William at school. JOY UNSPEAKABLE.

This is tongue in cheek, but we all have outward evidences of our inward state.

I always appreciate people asking how we are, what can be done, etc. The answers can feel fairly large and abstract, though. I decided to give some other options that may help.

Other options: (Which people have asked and done. A thousand thanks!)

1.How messy is your desk?  The desk is the outward display of my brain. Judge the order accordingly.

2.How did everyone sleep last night? Did we sleep? No, but it can tell you how full my tank is.

3.Do you need anything from the grocery store? (This has saved me MANY times.)

4. What errands need to be run? I may be planning and able to accomplish these on a weekend, but running to the post office or pharmacy for me helps keep Jonathan and Elizabeth safe from illness. It is an enormous blessing for me. I’d never think to ask and add it to someone’s day, but if someone is already doing or it is on the way, it saves me a LOT of work. Bonus: I get to SEE someone!

5. When can I take William? For the love. Middle child syndrome is REAL. He is an extrovert who is struggling to cope with Jonathan and Elizabeth needing attention and not being able to play with either one. Josh and I have to switch off ‘William shifts’ to get things done on weekends because he is desperate for attention. Play dates help teach him and are great for ‘typical’ kids to learn, so this is an enormous help.

6. What is on your shopping list? If you ask what we need, my mind goes blank. It is overfilled. However, I have lists. Jonathan needed new socks and shoes this month. I never would think to give than answer…but Amazon gift cards that many of you sent let him choose some great police and ambulance themed socks. Shopping makes him feel independent and lets him await the arrival of a package.

*Perishable or consumable things are best. Things like snacks, detergent, diapers, tp, etc. that many of you sent back in September were SOLID GOLD and saved us trips out, giving us time as a family.

All parents know the struggle of Legos, tiny accessories, etc. and we are no exception. Legos and toys with pieces are rotated so we aren’t overwhelmed but can still enjoy them.  You don’t know true dread until you realize someone threw up into the Lego bin and then spilled it.

Just letting me know you are out there and care helps. You aren’t nagging or in the way. If I can’t answer, I will get to you when I can, but it lets me know I have people who care about us. I’m a trapped extrovert who rarely sees people, and I NEED my people!

As for today, I showered. My hair is washed, dried, and brushed, thanks for asking.