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Morning Routine When You're Caring For a Child With Epilepsy

What a Typical Morning Looks Like When Your Child Is a Chronic Illness "Warrior"

Sarah lives in Milford, CT, with her husband and 4-year-old son. Sarah is a writer who works from wherever she can. Mornings are never structured exactly as they need to be, but a little extra time to absorb the fleeting childhood moments will never come with regret. Here's a look at a typical morning driven by an extremely loving child who always takes his time getting out the door.

My Morning Juggle

2:45 a.m.
My brain starts to wind down. I consider falling asleep but realize that the morning will be here before I know it. I try to analyze the likelihood of waking up on time to get my son out the door if I nod off for a few hours now. I decide it's not a good idea.
3:00 a.m.
I fall asleep anyway, telling my brain that two and a half hours will be plenty of time to sleep after I start to feel sick from being awake for so long. With worry, next to a toddler who has faced many medical challenges in the four years of his life, I succumb to exhaustion. As if navigating survivorship as the mom of a pediatric brain tumor and stroke survivor isn't exhausting enough, it's parenting an epilepsy warrior that keeps me from sleeping most nights.
5:13 a.m.
My internal clock goes off. I wake up with a sense of panic, thinking I've slept through the morning. I quickly realize it's not even 5:15 a.m. I have two minutes before my alarm goes off, so I set it to 5:30 a.m. and lie back down to relax.
5:28 a.m.
I stand over my alarm, giving my husband his two extra minutes before I start yelling into the other room to make sure he gets up for work. We gave up sleeping in the same bed years ago when our son was diagnosed with epilepsy. Our son sleeps comfortably next to me in our king-size bed, and my husband sleeps in the twin Batman bed that was meant for our 4-year-old. My husband yells back that he's up. I don't believe it, so I set my alarm for 7:30 a.m., hop back in bed, and wait to hear the shower before I doze off again.
8:22 a.m.
I have somehow slept through the 7:30 a.m. alarm and have no recollection of getting up to shut it off when it rang. I jump out of bed and grab my phone, looking down at the six missed calls from my husband that I also slept through. I spend a few minutes in frustration with myself. "Why can't I just develop a normal sleep pattern?" As I wish I could get into a routine like so many other parents, I realize our situation is unique and start to get ready for the day.
8:25 a.m.
I head downstairs, make a quick cup of keto coffee, grab my shake, and sit down for a minute. I practically chug down my coffee, which I throw a few ice cubes into so I can drink it faster.
8:30 a.m.
I throw on some clothes while heading into my son's room (the one that he doesn't sleep in), pick out a much nicer outfit for him than I do for myself, and scoot into the bathroom to splash some water on my face, brush my teeth, and pull my hair back, hitting it with some hairspray.
8:47 a.m.
I check my emails to make sure nothing is pressing.
8:54 a.m.
I quickly hop on to Skype to see if anyone has requested more work. I throw a "Good morning, peeps!" into the group chat for my main job so the boss knows I'm up and somewhat at it. He knows if I'm not directly available, he can reach out and I will respond if needed.
9:16 a.m.
My son still isn't awake. He would literally sleep until noon if I let him. I swear he's like a teenager. I should have had him up at 7:30 a.m. and out the door so I could drop him off at day care and get to work, but I let him sleep peacefully instead. I hop into bed next to him and stare at him for a few minutes . . . it's the eyelashes. I'm obsessed, and a day doesn't pass that I don't spend a few moments staring at his sleeping face and those lashes.
9:20 a.m.
He really needs to get up. I really need to get some work done. I start to gently wake him up. "Wake up, wake up, get out of bed. Get up, get up, you sleepyhead. Live, love, laugh, and be happy!" I start to sing to him, just as my mother used to sing to me. He smiles with his eyes still closed and rolls over.
9:22 a.m.
I hop over to the other side of the bed and try again. He stretches with a big groan, smiles again, and pulls me close. "I want to snuggle you," he says. "I want to snuggle you, too," I respond, "but you need to get up!" He uses the words that guilt me every time and make my heart flutter with love: "Come on . . . just two minutes." I agree.
9:25 a.m.
I lie there, snuggling with my boy, when everything else inside me says to get up and get him moving.
9:32 a.m.
"OK! Let's go! We gotta go! Hurry up! Get up and go to the bathroom!" He needs this type of motivation to actually get him out of bed, although it still takes another few minutes for him to actually get up and going. He throws the covers over his head — like I said, he's like a teenager — and tries to pretend he doesn't hear me. "Seriously, dude! It's not funny anymore. Mommy needs to get to work."
9:37 a.m.
He's goes to the bathroom. "Brush your teeth!" I yell to him as I'm trying to quickly grab some clothes and make sure I have everything in order.
9:39 a.m.
He comes out of the bathroom. No clothes! Running in circles. "You can't catch this coolie!" He tries to get me to play, but we will never get out of this house if we don't move it . . . NOW!
9:40 a.m.
I throw his clothes on. Spray his hair with a little water and gel it back. Give him his glasses. Help him with his shoes. "Let's go . . . let's go!" As he pokes down the stairs, I try to rush him along. The "Pokey Little Puppy," I call him. Just like the book.
9:44 a.m.
I hurry him into the kitchen to give him his daily morning meds. I throw a snack and a napkin in his lunchbox, fill his water bottle and throw that in there, too. I zip up his backpack and hold it out so he can throw his arms in. I grab a yogurt and a Nutri-grain bar and tell him he has to eat in the car because we're very, very late.
9:49 a.m.
I grab the extra bags he came home from school with this week (another thing I have to remember!) and realize I forgot to print out the picture for his "class pet journal." I know I won't be getting any work done until at least noon. I rush him along to the car as he strolls slowly, looking at the trees and the birds and anything else he can to stall.
9:52 a.m.
We pull out of the driveway, on our way to his day care.
10:11 a.m.
I pull into the driveway of his day care. We chose to keep him in the same place he's been since he was 5 weeks old, even though it's a bit of a ride since we moved. His daycare provider is like family to all of us, and she handles his chronic illness better than I think I do at times. Plus, it's peace of mind that he will be well taken care of. Epilepsy is a scary disease, and our own family is afraid to watch him. I'm grateful for this amazing woman, but I am still so, so, sooooooo late! I rush him into her house, give her an update on what's been going on this week, grab a kiss, and start to head out the door.
10:23 a.m.
"Wait, Mom!" He beckons to me as I'm closing the door. "One more kiss!!!" Of course, his wish is my command. One more kiss and I'm running to my car.
10:27 a.m.
I pull into the Starbucks parking lot with my computer and head inside to get at least an hour of work in before I have to pick him up at 11:45 a.m. to take him to school. Is it all worth it for an hour? It doesn't seem like it, but we keep trying. I hope our morning routine will get a little easier some day and we'll both be better at getting out the door.
10:32 a.m.
I take a sip of my coffee and a deep breath. I hop on my computer and aim to work smart, not hard. At least I'll get something done once I drop him off at school for the afternoon. Then maybe, just maybe, I can get to bed earlier tonight so we can start our routine earlier tomorrow. One can hope, right?
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