When The Sun Goes Down

It has been over thirteen years since I have slept through the night two nights in a row. I remember when Jace was a baby waiting for him to finally sleep through the night and talking with all of the other mom’s about this ‘big issue’, how it was just a season, and it would pass soon. I would try to savor it, to take it in, and cherish the time spent in the middle of the night with my sweet child… and I did. I cherished it every single night. I would think about the parents that lost their children and would dream of being awake at night with their living child. I would think about the parents that were struggling to conceive and how blessed I was to get pregnant easily. I still think about these things every night. I am so thankful for these precious babies God borrowed me here on earth. But no matter how grateful my heart feels, I am tired. I am SO tired.

Us ‘Autism parents’ can relate to this. It is one of the most common symptoms of the disorder, and only seems to get worse with age. (Someday we hope it will get better…we have faith) We are desperate. We are so tired we will buy anything, do anything, say anything to get sleep… you see, this subject can have it’s own category because it makes us crazy. It feels like a toy that won’t shut off… you know, when it stops singing and then all of a sudden you hear it again?

Paislie is up for 2-4 hours every night in the middle of the night and Jace is only asleep for approximately 4 hours each night. Their nights don’t always overlap with each other and that means while the kids are awake; mom is too… which feels like all of the time. We are lucky. Jace wakes up by 4am every morning but he is able to get himself breakfast, play a game independently, and not need me for anything immediate or urgent most days. Paislie also stays in her room during the night.

But I worry. Worrying never stops. The reason that Paislie stays in her room is because we have it set up so she is safe and secure. Paislie has locks on her closets that discourage her from ripping everything out of them, climbing a shelf and injuring herself. She has nothing on her walls because it would be ripped down and broken if she did. In fact, we are waiting on a large construction project to take place at the moment to help, as she has also destroyed the sheetrock in her room. The only toys in her room are ones she can destroy and not injure herself. She also can’t have anything she could climb. This limits her to small stuffed animals and barbies, items like that. She has a giant castle bed that prevents her from destroying her mattress (we have replaced 5), and it is heavy so she cannot move it. If she were to get to the window, we have locks and alarms on her window. She has a secure door that we can see into and a baby monitor we can watch to ensure her safety. She would elope if able. In the rare chance we would fall “asleep” and she were to figure that out, we have alarms on all of our doors as well.

Don’t misread that this doesn’t mean she is trying to flee the house… she isn’t at all. I have a very content little girl that loves being in her room, loves her house and her mom and dad. However, she isn’t always aware. If she saw something outside that looked interesting… she’d search for it and have no clue if someone called her name… she’d be so excited about whatever her mind was focused on in that moment that losing her would be easy. So I don’t sleep. I continue to worry and worry some more and drift in and out until I see on my clock it is morning. And then I buy things that might help. We have used vitamins, essential oils, weighted blankets, compression sheets, special lights in her room, comfort toys, sensory integration, bedtime routines, mixing up routines, calming music, sound machines…. Man… it feels like everything. So now we are into construction projects.

I’m jealous. I am jealous of parents that get sleep sometimes. I am jealous of parents that talk about their 6 month old finally sleeping through the night and I wonder how that feels… it must be really nice. I don’t want to be jealous… the mom that is tired after 6 months of no sleep is very tired…and has every reason to feel exhausted too. It’s just a different type of exhaustion. You see, I fake it well. Most of my friends have no idea the little sleep I get. Most think that I am full of energy and motivation. The truth is, I am running at 30 MPH when I am made to run at 100. I am capable of more… but limited.

Bedtime is draining. Everything is a struggle from the bristles on the tooth brush to the taste of the tooth paste….the obsession with water in Paislie, and the fear of bath time in Jace. It takes their minds 2 hours to shut down. This is very common amongst Autistic children. We have resorted to vitamin regimens, medication, and most recently medical cannabis. Bedtime is late for me because it has to be late. I find that the longer I push it… the more tired I become and then there is more of a chance that I will fall asleep faster and get more time asleep. It is thought about deeply and calculated nightly. It is all challenging and very demanding. I am tired.

But then I remember… this was never my will or my way. I didn’t choose Autism for my life. God did. God ordained all of the days in my book and in my children’s. I’ve said this before, and will say it again… not only did He allow Autism, He authored it. In 2 Corinthians 12:9, it says “My grace is sufficient for you, for my power is made perfect in weakness.”Paul continues to write “Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” And this… this reminds me that I am not in control… I don’t get to choose… He does. And I am glad. I am so weak. My weakness has made my relationship with Jesus strong…so strong. I need Him and He is here… every time. He gives me every ounce of energy I need and every bit of strength, understanding, patience, and drive. I’m not on my own… He is fighting this fight with me and my husband and for my children. The most freeing thing in the world is when you open your eyes and see that it isn’t all on you… He’s got this. He’s got them. He’s got me.