3 a.m.
I was always an early bird before kids. I remember springing out of bed as the first ray of light hit my window sill. I was annoying to others even… filled with pure joy, songs flowing from my mouth like that obnoxious roommate as you burrowed deeper into your covers to block out my sound. I found so much joy in a new day. My internal alarm said hello and I was up. I didn’t want to miss one moment of the day, in fact… if I did catch myself sleeping in at any moment, I would regret what I may have missed out on. Life was full, and I was going to relish every piece of it.
I am sitting here now, sipping on my hot black coffee, typing to you… at 3 a.m.
I remember being pregnant and knowing I would lose some sleep when the baby was small. I figured I would be up like the rest, feeding, swaddling, burping, and rocking that sweet babe. After all, that was what maternity leave was for… to get that baby on a routine. When my firstborn arrived, I found myself up every night with a child that couldn’t keep his milk down. Constant spit-up, changing PJs, and staring into his big beautiful brown eyes wasn’t a burden… it was a blessing. I was 22 and full of energy. I dare to say I enjoyed those moments even. We would spend our days snuggled on the couch, folding a load of laundry, or catching up on daytime talk shows, a day filled with rest. As time passed, he didn’t find a rhythm of sleep. He would fall asleep quickly and then often wake up throughout the night.
When Paislie was born, she slept better at first. Jace was still waking to play in his room. He started to wander and wasn’t able to respond to his name like a typical kiddo would so up went baby gates at his door just in case. I figured if he got through it, I would hear the gate clanking. I would wake up multiple times a night to check on him and make sure he was safe. As P hit age two, and the regression happened, overnight she went from a content baby to what we would call at the time, a high-speed tilt-a-whirl. She was spinning, screaming, climbing, running, and completely oblivious to our existence. Most of all, no matter how tired mom was… she couldn’t sleep. This was around the time that baby #3 had arrived, I found myself in the midst of a newborn, a new diagnosis, and three children that couldn’t sleep. Jace would sleep from 9 p.m. - to 4 a.m. P would sleep from 9 p.m. to 11 p.m., be awake from 11 p.m. to 1 a.m., sleep from 1 a.m. to 3 a.m., and again, wake from 3 a.m. to 6 a.m. And baby… was a healthy nursing baby… up every two hours like clockwork with a full feeding between.
With all of our babies, if I got up to feed, Aaron would get up too… sometimes to get me an extra pillow to rest my elbow, sometimes to change a diaper, sometimes… for company. When it was time for baby to lay back down though, he would sleep. Almost instantly… when his head hit the pillow, he was out. It wasn’t fair. Why was sleep so easy for him? I married a guy that you could suggest a nap to in the middle of a roller coaster and he would tip his head down and doze off… anywhere, anytime. Lights out. Just. Like. That. I spent each night up most of it, if they were falling asleep at the same time, I was watching to make sure they were ok… or my internal alarm would go off, alerting me to wake as they would likely be soon.
Baby books tell you 3-6 months until the baby can sleep through the night independently. I would spend days sitting in a Bible study or at a playdate hearing mothers vent or hem and haw about how to get their 7-month-old to sleep. “They should be sleeping through the night by now… I am exhausted.” I would find myself in what would be a familiar situation for the next decade or more, unable to relate. I hadn’t slept in years. It wasn’t easier. I wasn’t used to it. I remember sharing my exhaustion and someone saying, “well you are used to it, so your body probably handles that better.”
No. Absolutely not. I was destroyed. As years went on, everything from strict routines, essential oils, special diets, endless home remedies, vitamins, and finally medication was used to help. We would sometimes find that falling asleep quicker was happening, but the waking didn’t waver. Paislie started seeing a sleep doctor at a highly known hospital that has much experience with children with disabilities. I remember feeling on top of the world when we got in to see him. We arrived at the appointment and walked in expecting him to work some magic to help her sleep. He sat in his chair, observed… asked me several questions, and then turned the conversation to me. “What about you… when are you sleeping?” I stumbled on my words, “I’m not getting much”... he went on to tell me that P’s brain worked differently than mine. She would never sleep like a typical child would. With the severity of her disabilities, she would likely never sleep a full night unless it was a fluke. She would always wake, and we should always have precautions in place to keep her safe. He also explained that, unlike a typical brain, hers didn’t need as much sleep as my typical kids did. I still don’t know if I believe him, but it is what we are going with. Sometimes you gotta let the comments roll off your shoulders, and focus on what you can control in front of you. He told me instead, my body needed sleep for my health. It was taking a toll, and the real concern in the room wasn’t her… it was me. Weight gain, hair loss, and the heavy weight of stress were all related to the lack of sleep. I don’t recommend it. The doctor told me that I was a great mom… that I had tried everything possible. I had done everything in the book that could be done, and now it was his turn. He was going to take on that part and gave me permission to hand the stress of sleep to him. I can’t tell you what those words meant. As a mom that is fighting every day for their child, to have one thing taken off her plate is the best gift you could ever give me. We left with a prescription, a sleep chart to track, and hope that our child would soon fall asleep faster. But it didn’t last long enough. She was still up in the middle of the night multiple times. It wasn’t until we stopped all meds and Paislie started medical cannabis that we noticed an improvement in the duration of sleep, but it still wasn’t ideal. She is still up at 3 a.m., bright and bushy-tailed ready for her singing debut. Ten years in, and yes… she is still cute when she wakes in song. But I am tired.
Here I am…it is now almost 4 a.m. Jace will be up soon. He will wake on his own, curl up on the couch downstairs for a bit watching one of his shows that he has memorized and played on replay every day for the past two months. He might mosey into the kitchen for a bowl of cereal and make himself a coffee. Yes… he likes coffee and at age thirteen, it is fun to have my buddy to enjoy a cup of joe with in the morning. Paislie is still in her room right now, I have her camera on and my phone is propped up so I can watch and make sure the walls aren’t getting ripped and her pajamas are intact. No fecal smearing allowed. This is usually when it would happen if it did. She is wandering through her room, with a homemade wedding veil held onto her stuffed animal making her fly through the room like she is wearing a cape. She is scripting scenes from Bubble Guppies as loud as her voice will go, and will pause to break out into a super loud rendition of a song from Moana. Before I know it, 6 a.m. will roll around and I will have two more sets of feet running down the stairs for breakfast. God’s little blessings. All four of them.
I was like those new moms at those playdates one time, digging for answers to how to get my child to sleep, trying it all, and praying for answers. Now… I try to choose gratitude. She will sleep for much longer than she ever has before. Jace is able to get up and sit on the couch on his own without running out the door. We have gates, locks, and alarms in place to keep our children safe. I will admit, there are days when exhaustion takes over. No one wants to be woken up out of bed with screaming sounds of kids' tv shows on repeat coming out of their ten-year-olds mouth at 3 a.m. I am truly exhausted. She has switched to a song from the movie Brave now, and although that isn’t as catchy, I welcome the fresh sound this morning.
If you know a mom that isn’t getting sleep, please offer grace. She might be tuned out at times, forgetful even. She may snap easily or carry a chip on her shoulder from time to time. She might lose it and start crying at the request of one simple task. One more thing might just be enough to break her back. Please, give grace. She is likely doing everything she can to hold it all together, appearing collected on the outside… but inside she is falling apart.
If you want to do more, pray for her. Help her. Give her a break. Get into the trenches with her. We are created for community and trust me, the moms battling each night like me, we need it.
I don’t know if I will ever sleep well. I pray for that and I hope I will. I always say I will sleep great in heaven. The worry doesn’t seem to lessen with severe autism. In fact, in some ways, it worsens. But I count the blessings, the goals we have mastered, and the peace that has come. I am thankful to be the one that gets woken up by that sound every night. I am their mama and it is a job I relish in.
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